That's Kaitlyn's new nickname.
This kid is simply incredible. Her determination - incredible. Her spirit - incredible. Her smarts - incredible.
So where are all of these epiphanies coming from? Let me recap a situation that happened this week...
MONDAY - Monday Kaitlyn has gym class. While she participates with her class, there are clearly going to be things that she just can't do like the other kids.
Monday afternoon I got her off the bus, and asked her the same question I do everyday as we walk up the driveway..."How was school today Kaitlyn?". Normally this is when I am regaled with stories about who she played with at recess, how well she did on her spelling quiz, or what art project she worked on. However, on this day I was saddened to hear this response "School was not good today. I cried in gym." She went on to explain that they were practicing basketball skills. I have to say that Kaitlyn is quite skilled at both stationary dribbling and shooting. However, dribbling while moving up and down the court is not something that she can manage, and that was what they were working on. Over an after-school snack, I had a long conversation with her. I told her that she's entitled to feel frustrated, and tried to give her some coping tools so that she doesn't end up in tears the next time. This seemed to help at the moment, but if you know anything about Kaitlyn, you know that accepting that she can't do something is not an option.
WEDNESDAY - Now that it's December and freezing cold in the morning, Kaitlyn and I wait for the bus inside the house. However on Wednesday morning it was unseasonably warm, so Connor and I went outside with Kaitlyn to wait for the bus. While we were out there, Kaitlyn insisted on playing some basketball. Once we set up the hoop and brought out the ball, she ordered Connor to come by her side. Then she said "Watch Mommy. I know how I can dribble and walk.". It was then that she started dribbling the basketball (while standing still). After a few dribbles, she handed the ball to Connor and said "C'mon Connor". She ran toward the hoop and told him to dribble alongside her. When she got to the hoop, she instructed him to pass the ball back to her, then promptly shot the ball right through the net. Grinning ear to ear she turned to me and said nothing because she simply didn't need to. Her showcase of ingenuity spoke volumes.
I know I've said it a zillion times before, but I am just so in awe of Kaitlyn's spirit. There is truly nothing she cannot do, and she is proving that to the world every single day.
Thursday, December 2, 2010
Wednesday, November 24, 2010
Life is good!!!
Finally.
A post about nothing but good things.
It's so nice to write about how great things are going for Kaitlyn. I can't believe it’s been so long since I've written! I was reading my last post, and I am happy to report that all of the things I was worrying about a month ago are no longer concerns. Here is an update...
*Halloween - Halloween came and went without any issues whatsoever. The Halloween parade at school went off without a hitch. Kaitlyn was more than happy to ride in her fully-decorated wagon. She had a little friend ride with her, which was great. My concerns that she may be upset about the fact that she couldn't walk with the rest of the group were for nothing! She actually reminded me of a Homecoming Queen riding on her float the way that she was smiling and waving to the crowd! As for Halloween night, that too was better than I anticipated. Our fantastic neighbors offered to bring treats to Kaitlyn since Trick-or-Treating is such a challenge for her. She anxiously awaited each group of ghosts and goblins to ring the doorbell, and happily traded treats with them all. Honestly, she made out a lot better on the candy front than Connor did, and he walked 2 miles and rang every doorbell on the street! I feel so lucky to live in a neighborhood filled with such kind and generous people. Since she was dressed as a 50's Sock-Hop girl, we went to a 50's diner for breakfast on Halloween morning. The ladies there LOVED her (almost as much as she loved herself!!!)!
*School Field Trip - The trip to the fire station went pretty well overall. I volunteered to chaperone so that I could make sure that Kaitlyn was okay (I plan to volunteer for every single field trip until she graduates high school, but don't tell her that!). At the end of the day it was very clear that she would have been fine without me, but it just puts my mind at ease to be by her side. For the walk up the street to the fire station, Kaitlyn really held her own to keep up with the group. She made it through all of the fun activities with the firefighters, and had a great time. By the time we were ready to return to school, I could see how tired she was. The walk back to school proved to be tough. She and I fell way behind the group, but she made it back to school. Her very sweet teacher noticed us lagging behind, and came back to walk the final leg of the trip with us, which I really appreciated.
We are working toward getting Kaitlyn a stroller/chair system. Where I once fought the idea of needing any of this type of "equipment", I now embrace it. If it will help Kaitlyn be able to enjoy trips that will undoubtedly be longer than the walk to the fire station, then OF COURSE we should get her whatever she needs! Honestly, seeing how she handled riding in her wagon for the Halloween parade, I have no doubt that she would be just fine riding in a stroller (that we will of course personalize to make it "cool" for her!).
As far as a couple of other "good things" in Kaitlyn's world right now, there are two that come to mind. First, she is doing AWESOME in school! She got her very first report card for first grade, and it was super. I had an IEP meeting this week to talk to her teacher and the rest of her school team, and they really couldn't have been more glowing in their assessment of Kaitlyn's physical, academic, and social abilities. She has been placed in an advanced reading group, which is important to note because there was a time when we were told by a Neurologist that with Kaitlyn's type of CP, cognitive impairment could be a factor. Perhaps I should send him a copy of Kaitlyn's report card showcasing how well she's doing in all of her subjects (math, reading, handwriting and spelling)! Take that Neurologist!!!
The second good thing in Kaitlyn's world is certainly her continued love of dance class. She just lights up on Tuesdays when she's headed out to her class. It is astounding to me how hard she works to do her very best each and every week. She never complains that she can't do things the way the other girls do. Honestly, I think that she thinks she's every bit as capable as anyone else, and I couldn't agree more. I just love her spirit, and continue to be inspired by her!
I'll leave you with this clip of her doing her thing at dance class...
A post about nothing but good things.
It's so nice to write about how great things are going for Kaitlyn. I can't believe it’s been so long since I've written! I was reading my last post, and I am happy to report that all of the things I was worrying about a month ago are no longer concerns. Here is an update...
*Halloween - Halloween came and went without any issues whatsoever. The Halloween parade at school went off without a hitch. Kaitlyn was more than happy to ride in her fully-decorated wagon. She had a little friend ride with her, which was great. My concerns that she may be upset about the fact that she couldn't walk with the rest of the group were for nothing! She actually reminded me of a Homecoming Queen riding on her float the way that she was smiling and waving to the crowd! As for Halloween night, that too was better than I anticipated. Our fantastic neighbors offered to bring treats to Kaitlyn since Trick-or-Treating is such a challenge for her. She anxiously awaited each group of ghosts and goblins to ring the doorbell, and happily traded treats with them all. Honestly, she made out a lot better on the candy front than Connor did, and he walked 2 miles and rang every doorbell on the street! I feel so lucky to live in a neighborhood filled with such kind and generous people. Since she was dressed as a 50's Sock-Hop girl, we went to a 50's diner for breakfast on Halloween morning. The ladies there LOVED her (almost as much as she loved herself!!!)!
*School Field Trip - The trip to the fire station went pretty well overall. I volunteered to chaperone so that I could make sure that Kaitlyn was okay (I plan to volunteer for every single field trip until she graduates high school, but don't tell her that!). At the end of the day it was very clear that she would have been fine without me, but it just puts my mind at ease to be by her side. For the walk up the street to the fire station, Kaitlyn really held her own to keep up with the group. She made it through all of the fun activities with the firefighters, and had a great time. By the time we were ready to return to school, I could see how tired she was. The walk back to school proved to be tough. She and I fell way behind the group, but she made it back to school. Her very sweet teacher noticed us lagging behind, and came back to walk the final leg of the trip with us, which I really appreciated.
We are working toward getting Kaitlyn a stroller/chair system. Where I once fought the idea of needing any of this type of "equipment", I now embrace it. If it will help Kaitlyn be able to enjoy trips that will undoubtedly be longer than the walk to the fire station, then OF COURSE we should get her whatever she needs! Honestly, seeing how she handled riding in her wagon for the Halloween parade, I have no doubt that she would be just fine riding in a stroller (that we will of course personalize to make it "cool" for her!).
As far as a couple of other "good things" in Kaitlyn's world right now, there are two that come to mind. First, she is doing AWESOME in school! She got her very first report card for first grade, and it was super. I had an IEP meeting this week to talk to her teacher and the rest of her school team, and they really couldn't have been more glowing in their assessment of Kaitlyn's physical, academic, and social abilities. She has been placed in an advanced reading group, which is important to note because there was a time when we were told by a Neurologist that with Kaitlyn's type of CP, cognitive impairment could be a factor. Perhaps I should send him a copy of Kaitlyn's report card showcasing how well she's doing in all of her subjects (math, reading, handwriting and spelling)! Take that Neurologist!!!
The second good thing in Kaitlyn's world is certainly her continued love of dance class. She just lights up on Tuesdays when she's headed out to her class. It is astounding to me how hard she works to do her very best each and every week. She never complains that she can't do things the way the other girls do. Honestly, I think that she thinks she's every bit as capable as anyone else, and I couldn't agree more. I just love her spirit, and continue to be inspired by her!
I'll leave you with this clip of her doing her thing at dance class...
Saturday, October 16, 2010
Thinking, thinking, thinking...
Wow, has it really been a month since I posted something here? I can't say that I'm surprised - it's been an incredibly busy month!
Lately I've been noticing how much time I spend thinking about Kaitlyn. I think about her health. I think about her needs. I think about her challenges. I think about her physical therapy. I think about her doctor's appointments. I think, I think, I think. Often I go to bed and think some more. I know that all parents worry about their kids well-being, but for me it goes beyond the typical concerns. Here are some recent examples...
1. Halloween is coming. We really love this holiday around here! So, like most parents, my first thought was about getting a costume. So Kaitlyn and I started looking through catalogues, and she chose the cutest 50's girl outfit complete with a poodle skirt! For most parents, that would be the end of thinking about Halloween. For me, it was just the beginning. I immediately started thinking...
*There is a Halloween parade at school, which involved walking the perimeter of the school - twice. How are we going to get Kaitlyn to participate? Can she walk that whole distance? Can she ride in a wagon? Is she going to be embarrassed if she has to ride while all of the other kids walk?
*What on earth are we going to do about Trick-or-Treating? Clearly Kaitlyn can't walk the whole distance in the neighborhood that Connor can cover. Also, many houses (like our own) have front steps that do not have a railing, meaning she can't climb up and down the steps by herself. Should we let her walk just to a couple of houses? She would let her driver her jeep? If we do that, either Chris or I will have to pick her up out of the jeep and lift her up all the steps. Should we let her drive the jeep and stay put in it while Connor runs to the door to collect candy for the two of them? Wouldn't she hate that since she clearly will want to show off her costume to all of the neighbors???
2. There is a field trip coming up where the kids walk to the fire station up the street from the school.
*How will Kaitlyn get there? She could maybe walk that distance, but there's no way she could keep up with the class. If we don't' want her to walk, how will she get there? There is a golf cart that is sometimes used around the school. Can she ride in that? Is that even legally allowed? Can she get pulled in a wagon? Would she hate that?
There are just so many circumstances that arise when it comes to making sure Kaitlyn can get around in the world safely and easily. Just last weekend we took a tram up to the top of Cannon Mountain, which was beautiful! However, once we were up there we quickly realized that the skinny hiking trail we had conquered in the past was now much more treacherous for Kaitlyn. It was wet, muddy, and ice-covered in spots. Further, it was very crowded an only wide enough for one person at a time. So, as people came toward us in the opposite direction, Chris, Connor and I could just kind of turn sideways and let them pass. Obviously, that wasn't an option for Kaitlyn with her walker. In the past, Chris would just lift Kaitlyn onto his shoulders and move along and I would carry her walker. I saw him lift her onto his shoulders once again, but couldn't help but notice that this time he had trouble. She's not the 30 pound 4-year old she was the last time we did this. She's getting bigger, and it's getting harder to lift her. Soon, this won't be an option, which leaves me thinking...how will we be able to do things like this in the future?
Okay, so here's what I'm thinking about today...sneakers. Yes, just sneakers. Like most of you parents out there, at the beginning of the school year I go out and buy each of my kids a spiffy new pair of sneakers. In my mind, these should last them the school year. In Connor's case, he gets at least 6 months out of them, which is good enough for me. In Kaitlyn's case, that's not even close!!! The problem is that Kaitlyn drags her toes when she walks, resulting in the rubber sole near the toe wearing away. In no time, her sneakers end up with a hole in the toe, rendering them useless. Here are some pictures of her current sneakers. These are the SECOND pair of sneakers she's had since the school year started. Notice how the black sole is totally worn out between the tippy-toe and the bottom of the shoe. This is the area that Kaitlyn drags...
So, today I'm thinking...What the heck can I do to prevent this from happening??? Can you imagine the cost of buying a new pair of sneakers each month??? Oh, and by the way, don't think that just any sneakers fit over her braces. That couldn't be farther from the truth. Sneaker shopping is an absolute nightmare. We have to find some that are deep enough, wide enough, and have velcro or laces that reach over the top of the braces. Of course they also have to look good or Kaitlyn will refuse to wear them! Nightmare.
Okay, I think I need to just stop thinking for a minute. I need to just focus on all of the good things happening in Kaitlyn's life. She loves school, she has lots of friends, she really loves her dance class, and she's as cute as a button. Life is good. Now if I can just remember that, and stop thinking about all of the other nonsense, life would be great!!!
Lately I've been noticing how much time I spend thinking about Kaitlyn. I think about her health. I think about her needs. I think about her challenges. I think about her physical therapy. I think about her doctor's appointments. I think, I think, I think. Often I go to bed and think some more. I know that all parents worry about their kids well-being, but for me it goes beyond the typical concerns. Here are some recent examples...
1. Halloween is coming. We really love this holiday around here! So, like most parents, my first thought was about getting a costume. So Kaitlyn and I started looking through catalogues, and she chose the cutest 50's girl outfit complete with a poodle skirt! For most parents, that would be the end of thinking about Halloween. For me, it was just the beginning. I immediately started thinking...
*There is a Halloween parade at school, which involved walking the perimeter of the school - twice. How are we going to get Kaitlyn to participate? Can she walk that whole distance? Can she ride in a wagon? Is she going to be embarrassed if she has to ride while all of the other kids walk?
*What on earth are we going to do about Trick-or-Treating? Clearly Kaitlyn can't walk the whole distance in the neighborhood that Connor can cover. Also, many houses (like our own) have front steps that do not have a railing, meaning she can't climb up and down the steps by herself. Should we let her walk just to a couple of houses? She would let her driver her jeep? If we do that, either Chris or I will have to pick her up out of the jeep and lift her up all the steps. Should we let her drive the jeep and stay put in it while Connor runs to the door to collect candy for the two of them? Wouldn't she hate that since she clearly will want to show off her costume to all of the neighbors???
2. There is a field trip coming up where the kids walk to the fire station up the street from the school.
*How will Kaitlyn get there? She could maybe walk that distance, but there's no way she could keep up with the class. If we don't' want her to walk, how will she get there? There is a golf cart that is sometimes used around the school. Can she ride in that? Is that even legally allowed? Can she get pulled in a wagon? Would she hate that?
There are just so many circumstances that arise when it comes to making sure Kaitlyn can get around in the world safely and easily. Just last weekend we took a tram up to the top of Cannon Mountain, which was beautiful! However, once we were up there we quickly realized that the skinny hiking trail we had conquered in the past was now much more treacherous for Kaitlyn. It was wet, muddy, and ice-covered in spots. Further, it was very crowded an only wide enough for one person at a time. So, as people came toward us in the opposite direction, Chris, Connor and I could just kind of turn sideways and let them pass. Obviously, that wasn't an option for Kaitlyn with her walker. In the past, Chris would just lift Kaitlyn onto his shoulders and move along and I would carry her walker. I saw him lift her onto his shoulders once again, but couldn't help but notice that this time he had trouble. She's not the 30 pound 4-year old she was the last time we did this. She's getting bigger, and it's getting harder to lift her. Soon, this won't be an option, which leaves me thinking...how will we be able to do things like this in the future?
Okay, so here's what I'm thinking about today...sneakers. Yes, just sneakers. Like most of you parents out there, at the beginning of the school year I go out and buy each of my kids a spiffy new pair of sneakers. In my mind, these should last them the school year. In Connor's case, he gets at least 6 months out of them, which is good enough for me. In Kaitlyn's case, that's not even close!!! The problem is that Kaitlyn drags her toes when she walks, resulting in the rubber sole near the toe wearing away. In no time, her sneakers end up with a hole in the toe, rendering them useless. Here are some pictures of her current sneakers. These are the SECOND pair of sneakers she's had since the school year started. Notice how the black sole is totally worn out between the tippy-toe and the bottom of the shoe. This is the area that Kaitlyn drags...
So, today I'm thinking...What the heck can I do to prevent this from happening??? Can you imagine the cost of buying a new pair of sneakers each month??? Oh, and by the way, don't think that just any sneakers fit over her braces. That couldn't be farther from the truth. Sneaker shopping is an absolute nightmare. We have to find some that are deep enough, wide enough, and have velcro or laces that reach over the top of the braces. Of course they also have to look good or Kaitlyn will refuse to wear them! Nightmare.
Okay, I think I need to just stop thinking for a minute. I need to just focus on all of the good things happening in Kaitlyn's life. She loves school, she has lots of friends, she really loves her dance class, and she's as cute as a button. Life is good. Now if I can just remember that, and stop thinking about all of the other nonsense, life would be great!!!
Tuesday, September 14, 2010
Connor, Connor, Connor...
Cerebral Palsy is a funny thing. Although the official diagnosis is Kaitlyn's, I often feel like there should be some kind of secondary diagnosis that applies to me and Chris. While of course neither Chris nor I have CP, we suffer many of its side effects. For me the condition has undoubtedly caused absolute heartbreak. While I try to always focus on the positive, I admittedly have my moments of sadness. When your 4-year-old bursts into tears while driving through town on a beautiful spring day, and when asked why tells you through her tears that she "just wants to walk like the other kids", you too would be overcome with sadness.
However this post isn't about me. As an adult, I am lucky. I have the capacity to understand what CP is, I have the tools to cope with the sad moments, and I have the ability to get past those moments and focus on all of the wonderful things that make Kaitlyn so special. However, at four years old, Connor has so much to learn about Cerebral Palsy.
I really haven't spent too much time talking to Connor about all of this. He knows that Kaitlyn has Cerebral Palsy. He knows that she has trouble walking or running. He knows that she is his best friend, and that he loves her more than anything. To me, that seemed like enough.
Lately, it has become clear that Connor is much more aware of the toll that living with this condition takes on his sister...
Connor had a banner weekend. He played in his very first soccer game, he mastered riding his bike without training wheels, and he felt like a superhero when he whacked the pinata off the pole at our block party. Really, it was a banner weekend for him.
On Monday, he and I were having lunch together (my new absolute favorite time of the day). We were talking about how well he's doing riding his bike. He asked me if Kaitlyn would ever be able to ride her bike without training wheels. I said that she might, but she might not. He asked me if she can't ride like him because she has Cerebral Palsy. I said yes. I explained to him that because she has CP she can't walk like him, she can't run like him, she can't ride a bike like him, and she can't play soccer with him. I then told him that none of that matters, and that even though she does things differently, she can still do all of those things in her own way. I felt pretty good about my answer, and thought that since he turned away and was intently focused on his sandwich that the conversation may be done. Connor then turned to me, looked me right in the eye, and asked me a question that I didn't see coming. In a soft voice the tone of which was riddled with worry, he said...
"Mommy, will Kaitlyn have cerebral palsy forever?"
I answered him in the only way I knew how, and said "Yes.".
So now I'm adding Connor to the list of people clearly affected by Kaitlyn's condition. Next on my to-do list...figure out how to help Connor deal with all of this. Wish me luck.
However this post isn't about me. As an adult, I am lucky. I have the capacity to understand what CP is, I have the tools to cope with the sad moments, and I have the ability to get past those moments and focus on all of the wonderful things that make Kaitlyn so special. However, at four years old, Connor has so much to learn about Cerebral Palsy.
I really haven't spent too much time talking to Connor about all of this. He knows that Kaitlyn has Cerebral Palsy. He knows that she has trouble walking or running. He knows that she is his best friend, and that he loves her more than anything. To me, that seemed like enough.
Lately, it has become clear that Connor is much more aware of the toll that living with this condition takes on his sister...
Connor had a banner weekend. He played in his very first soccer game, he mastered riding his bike without training wheels, and he felt like a superhero when he whacked the pinata off the pole at our block party. Really, it was a banner weekend for him.
On Monday, he and I were having lunch together (my new absolute favorite time of the day). We were talking about how well he's doing riding his bike. He asked me if Kaitlyn would ever be able to ride her bike without training wheels. I said that she might, but she might not. He asked me if she can't ride like him because she has Cerebral Palsy. I said yes. I explained to him that because she has CP she can't walk like him, she can't run like him, she can't ride a bike like him, and she can't play soccer with him. I then told him that none of that matters, and that even though she does things differently, she can still do all of those things in her own way. I felt pretty good about my answer, and thought that since he turned away and was intently focused on his sandwich that the conversation may be done. Connor then turned to me, looked me right in the eye, and asked me a question that I didn't see coming. In a soft voice the tone of which was riddled with worry, he said...
"Mommy, will Kaitlyn have cerebral palsy forever?"
I answered him in the only way I knew how, and said "Yes.".
So now I'm adding Connor to the list of people clearly affected by Kaitlyn's condition. Next on my to-do list...figure out how to help Connor deal with all of this. Wish me luck.
Tuesday, September 7, 2010
People say the stupidest things!
I remember when Kaitlyn as a baby all the way up until she was about 2, people used to do that thing that all mothers love... They would stop me in the grocery store or the park just to tell me how cute my little girl was. Back in those days they would see her sitting in the grocery cart or stroller, and of course have no idea that she has CP. She was the sweetest little thing, always smiling at everyone and eating up the compliments.
Since that time we have gotten accustomed to attention of a different nature. Apparently when you go out into the world and look a little different than everyone else, people love to stare. Further, the fact that you use a walker or wear braces gives complete strangers the license to ask you really stupid and hugely inappropriate questions.
When Kaitlyn was little, she was completely oblivious to most of this. So Chris and I would either just ignore people who asked moronic questions, or give them a quick answer just to get them to go away. However, now that Kaitlyn is older, she is unfortunately well aware of the things that people say. Chris and I have worked with her to make sure that she has all of the tools to deal with the questions. Last week at school she had a Q&A session in front of her whole class during which she and her physical therapist answered all of the questions the kids had about her. She told them with ease that she has cerebral palsy, and that her walker and braces just help her to walk better. I love that in schools today differences from hair type, to wearing glasses, to having cerebral palsy are all embraced and discussed. This kind of openness really helps to remove any stigma attached to any difference a child might have.
The funny thing is that the 6-year olds of the world seem to have a much healthier attitude than the adults. Honestly, I find that children who see Kaitlyn for the first time at school, the park, or the mall tend to ask very straight forward questions, and they accept the answers and are able to move on. A typical exchange goes something like this...
CHILD: Why do you have that (pointing to her walker)?
KAITLYN: It helps me walk.
CHILD: Can I have a turn with it?
KAITLYN: No, I need it to walk, but you can ring the bell if you want to.
CHILD: Okay.
Children are naturally curious, and are not expected to filter questions that may or may not be appropriate to ask a stranger. They are also able to accept Kaitlyn with no problem once they understand what the deal is. I truly welcome questions from children. However, and this goes out to any idiot out there who feels inclined to say something wildly rude to a 6-year old... I DO NOT WELCOME THE FOLLOWING QUESTIONS THAT YOU ARE COMPELLED TO ASK RIGHT IN FRONT OF KAITLYN...
"What happened to her?"
"What kind of handicap does she have?"
"Are her legs broken?"
And my personal favorite...
"What's wrong with her?" (Chris faced this one in Home Depot this weekend).
While I once read in Dear Abby that I'm not obligated to answer the question posed, and instead I should turn it around and say something like... "Why would ask such an inappropriate question of a complete stranger?", what actually comes to mind is something more like "There's nothing wrong with her. What the hell is wrong with you, you stupid, tactless, brainless, rude, moron???"
As always I'm cognizant of the fact that every action I make sets an example for Kaitlyn. She is always listening and watching to see how I react to these situations, so I take a deep breath, put a smile on my face, and always give people a gentle answer in hopes that they'll take a hint and go away. When people ask what's wrong with her, and she's standing right next to me, I generally say "Nothing is wrong with her. She just needs a little help walking.". Now I'm finding that Kaitlyn has the confidence to answer these questions on her own. She's told me that it doesn't bother her that people ask her these things, and that she's fine answering their questions. She truly is a better person than I am.
While I am thrilled that she seems unfazed by the fact that is required to endure and endless barrage of personal questions, I can't help but wish she lived in a world where people could see past the equipment, and just focus on the beautiful person that Kaitlyn is.
Since that time we have gotten accustomed to attention of a different nature. Apparently when you go out into the world and look a little different than everyone else, people love to stare. Further, the fact that you use a walker or wear braces gives complete strangers the license to ask you really stupid and hugely inappropriate questions.
When Kaitlyn was little, she was completely oblivious to most of this. So Chris and I would either just ignore people who asked moronic questions, or give them a quick answer just to get them to go away. However, now that Kaitlyn is older, she is unfortunately well aware of the things that people say. Chris and I have worked with her to make sure that she has all of the tools to deal with the questions. Last week at school she had a Q&A session in front of her whole class during which she and her physical therapist answered all of the questions the kids had about her. She told them with ease that she has cerebral palsy, and that her walker and braces just help her to walk better. I love that in schools today differences from hair type, to wearing glasses, to having cerebral palsy are all embraced and discussed. This kind of openness really helps to remove any stigma attached to any difference a child might have.
The funny thing is that the 6-year olds of the world seem to have a much healthier attitude than the adults. Honestly, I find that children who see Kaitlyn for the first time at school, the park, or the mall tend to ask very straight forward questions, and they accept the answers and are able to move on. A typical exchange goes something like this...
CHILD: Why do you have that (pointing to her walker)?
KAITLYN: It helps me walk.
CHILD: Can I have a turn with it?
KAITLYN: No, I need it to walk, but you can ring the bell if you want to.
CHILD: Okay.
Children are naturally curious, and are not expected to filter questions that may or may not be appropriate to ask a stranger. They are also able to accept Kaitlyn with no problem once they understand what the deal is. I truly welcome questions from children. However, and this goes out to any idiot out there who feels inclined to say something wildly rude to a 6-year old... I DO NOT WELCOME THE FOLLOWING QUESTIONS THAT YOU ARE COMPELLED TO ASK RIGHT IN FRONT OF KAITLYN...
"What happened to her?"
"What kind of handicap does she have?"
"Are her legs broken?"
And my personal favorite...
"What's wrong with her?" (Chris faced this one in Home Depot this weekend).
While I once read in Dear Abby that I'm not obligated to answer the question posed, and instead I should turn it around and say something like... "Why would ask such an inappropriate question of a complete stranger?", what actually comes to mind is something more like "There's nothing wrong with her. What the hell is wrong with you, you stupid, tactless, brainless, rude, moron???"
As always I'm cognizant of the fact that every action I make sets an example for Kaitlyn. She is always listening and watching to see how I react to these situations, so I take a deep breath, put a smile on my face, and always give people a gentle answer in hopes that they'll take a hint and go away. When people ask what's wrong with her, and she's standing right next to me, I generally say "Nothing is wrong with her. She just needs a little help walking.". Now I'm finding that Kaitlyn has the confidence to answer these questions on her own. She's told me that it doesn't bother her that people ask her these things, and that she's fine answering their questions. She truly is a better person than I am.
While I am thrilled that she seems unfazed by the fact that is required to endure and endless barrage of personal questions, I can't help but wish she lived in a world where people could see past the equipment, and just focus on the beautiful person that Kaitlyn is.
Wednesday, August 25, 2010
Swing Set Victory!
It's so interesting for me to watch Connor grow. I can't help but marvel at how easily the "normal" things come to him. Things I would never notice if I didn't have a child with challenges as a comparison. Connor loves to play outside, and this kid can scale our backyard swing set with the speed and agility of the monkeys navigating the trees at the zoo. He seems to leap from spot to spot, and fly up any ladder or rock wall in front of him. For him there is no thought to his approach, it just all comes naturally and easily.
Then we have Kaitlyn. The simplest task like climbing a few steps on a ladder comes with a fair amount of forethought and even more determination and physical output. Although her system for getting up a rock wall or ladder takes 10 times longer than every other child's, she loves the fact that she can now do all of these things on her own. The fact that she can get up that ladder by herself trumps any frustration of the time and effort it takes to do so.
This summer there was one thing that she just couldn't do on her own when it came to the swing set. She LOVES to swing, and last year in Kindergarten she learned to pump her legs herself so that she didn't need anyone to push her. She was very proud of this. However, the one thing she couldn't do was get herself onto the swing. It was just too difficult to pull herself up. This was frustrating to Kaitlyn, especially when her younger brother could easily pull himself up on the swing, or stand on the swing, or hang off the swing by one leg, etc...
Well, as the summer winds down and we are getting ready to start school this week, Kaitlyn had a major swing set victory. The other day she spent the better part of 10 minutes pulling, jumping, wiggling and simply willing herself to get up on that swing. After about 5 minutes of watching her struggle I offered to help her "just a little bit", which she staunchly refused. A few minutes later, without any help from me - SHE DID IT! I don't know who was happier - her, me, or Connor! All three of us cheered in acknowledgement of the fact that she had conquered the swing set beast that had been tormenting her for all this time!
So while this is a small victory for sure, it is another step toward the independence Kaitlyn so strongly desires. Once again I stood in awe watching her work so hard to do something that comes so easily to other kids. I'm someone who tries to look for that elusive silver lining in every situation. Admittedly it's not easy to find it when you a child with CP. However in that moment, on that swing set, I stood and watched my daughter swing toward the sky as she smiled ear to ear. I took in that moment in time and really appreciated the effort she put in to get there. As I watched her I felt incredibly happy and relieved that she was able to do this all on her own. Watching a child play on a swing set is something that we as mothers do all the time. Most of the time, we don't stop and enjoy the smile on our child's face, and we certainly don't pause to appreciate the fact that they can pull themselves up onto a swing. Because of Kaitlyn, I am able to appreciate so many little moments in life that I may have otherwise overlooked.
Then we have Kaitlyn. The simplest task like climbing a few steps on a ladder comes with a fair amount of forethought and even more determination and physical output. Although her system for getting up a rock wall or ladder takes 10 times longer than every other child's, she loves the fact that she can now do all of these things on her own. The fact that she can get up that ladder by herself trumps any frustration of the time and effort it takes to do so.
This summer there was one thing that she just couldn't do on her own when it came to the swing set. She LOVES to swing, and last year in Kindergarten she learned to pump her legs herself so that she didn't need anyone to push her. She was very proud of this. However, the one thing she couldn't do was get herself onto the swing. It was just too difficult to pull herself up. This was frustrating to Kaitlyn, especially when her younger brother could easily pull himself up on the swing, or stand on the swing, or hang off the swing by one leg, etc...
Well, as the summer winds down and we are getting ready to start school this week, Kaitlyn had a major swing set victory. The other day she spent the better part of 10 minutes pulling, jumping, wiggling and simply willing herself to get up on that swing. After about 5 minutes of watching her struggle I offered to help her "just a little bit", which she staunchly refused. A few minutes later, without any help from me - SHE DID IT! I don't know who was happier - her, me, or Connor! All three of us cheered in acknowledgement of the fact that she had conquered the swing set beast that had been tormenting her for all this time!
So while this is a small victory for sure, it is another step toward the independence Kaitlyn so strongly desires. Once again I stood in awe watching her work so hard to do something that comes so easily to other kids. I'm someone who tries to look for that elusive silver lining in every situation. Admittedly it's not easy to find it when you a child with CP. However in that moment, on that swing set, I stood and watched my daughter swing toward the sky as she smiled ear to ear. I took in that moment in time and really appreciated the effort she put in to get there. As I watched her I felt incredibly happy and relieved that she was able to do this all on her own. Watching a child play on a swing set is something that we as mothers do all the time. Most of the time, we don't stop and enjoy the smile on our child's face, and we certainly don't pause to appreciate the fact that they can pull themselves up onto a swing. Because of Kaitlyn, I am able to appreciate so many little moments in life that I may have otherwise overlooked.
Thursday, August 12, 2010
Am I a bad mother???
Okay moms, we all seem to navigate our way through about a million decisions each day that effect the well being of our kids. Most of these decisions come with ease...No, you can't have ice cream for dinner. Yes, you have to wear sunscreen to the beach. No, it's not okay to use your brother as your coloring sheet with your new markers.... etc., etc., etc....
However some of these decisions seem to fall in more of a gray area when it comes to safety. When are the kids old enough to play in the yard while I'm in the house? How far ahead of me can Connor ride on his bike without running the risk of getting hit by a Mack truck? You get the picture. Today I ran into a real conundrum with Kaitlyn's safety. Here is the question I'm faced with...
Is it wrong for me to allow her to continue to ride her bike independently if she keeps falling and getting hurt?
As I've said a zillion times before, Kaitlyn is fiercely, and I mean fiercely, independent. By and large, this trait has been incredibly beneficial to Kaitlyn. She has overcome so many challenges that she has faced solely due to her own determination and sheer will. Even going back to her time spent in the NICU, the doctors there described her to Chris and me as being "A VERY DETERMINED LITTLE GIRL".
Today for the first time, I'm feeling as though that sense of independence has become a hindrance to her safety. In order for Kaitlyn to ride her super-fancy princess bike (which Santa brought her and she LOVES), Chris had to attach some pedal adapters. These adapters are basically metal plates placed on top of the pedals that have velcro straps over the top of her foot and around her ankle that keep her feet in place and allow her to pedal on her own. The obvious upside is that she's able to keep her feet where they belong, and operate her bike independently. On the downside, when she falls, she's attached to the bike. She has no chance to stick a leg out and break her fall at all. When she falls, she falls hard. Really hard. In the past she has been zipping around at a pretty good speed, fallen, and really scraped up her elbow. Today she was riding around the circle up the street with her friends. She fell not once but twice, managing to bang her forehead pretty seriously each time. After the second time (and one really nasty forehead egg), I encouraged her to move onto the swing set, which she wasn't thrilled about. She simply wants to do what the other kids do, and today was all about riding bikes.
For the record, of course in the past I have tried to stick right on top of her, and I have run hundreds of laps around that darn circle with her. After some time, Kaitlyn told me in no uncertain terms to get the heck away from her because she can do it by herself. As she told me, she is of course six years old, and didn't I see that even the three year olds were allowed to ride by themselves??? Sometimes she clearly finds me so totally annoying! She has gone so far as to give me a little shove when I was walking next to her and told me to go away. Today she made it around the circle probably 10 times with no problem. It was when she was stopped and sitting perfectly still that she toppled over. I think that she was looking down at the pedals and just fell straight to the ground banging her forehead. Twice. Ugh.
Of course she still wouldn't let me run by her side. Of course she still insisted on doing this on her own. So what's a mother to do? If I let her do it on her own, I feel like I'm putting her in peril. She clearly could fall and get hurt. If I don't let her do it on her own, am I stifling her sense of independence that we have worked so hard to foster for so many years? Would not allowing her to ride her bike on her own send her the message that she actually can't do something her friends do for the first time?
So really, what's a mother to do???
However some of these decisions seem to fall in more of a gray area when it comes to safety. When are the kids old enough to play in the yard while I'm in the house? How far ahead of me can Connor ride on his bike without running the risk of getting hit by a Mack truck? You get the picture. Today I ran into a real conundrum with Kaitlyn's safety. Here is the question I'm faced with...
Is it wrong for me to allow her to continue to ride her bike independently if she keeps falling and getting hurt?
As I've said a zillion times before, Kaitlyn is fiercely, and I mean fiercely, independent. By and large, this trait has been incredibly beneficial to Kaitlyn. She has overcome so many challenges that she has faced solely due to her own determination and sheer will. Even going back to her time spent in the NICU, the doctors there described her to Chris and me as being "A VERY DETERMINED LITTLE GIRL".
Today for the first time, I'm feeling as though that sense of independence has become a hindrance to her safety. In order for Kaitlyn to ride her super-fancy princess bike (which Santa brought her and she LOVES), Chris had to attach some pedal adapters. These adapters are basically metal plates placed on top of the pedals that have velcro straps over the top of her foot and around her ankle that keep her feet in place and allow her to pedal on her own. The obvious upside is that she's able to keep her feet where they belong, and operate her bike independently. On the downside, when she falls, she's attached to the bike. She has no chance to stick a leg out and break her fall at all. When she falls, she falls hard. Really hard. In the past she has been zipping around at a pretty good speed, fallen, and really scraped up her elbow. Today she was riding around the circle up the street with her friends. She fell not once but twice, managing to bang her forehead pretty seriously each time. After the second time (and one really nasty forehead egg), I encouraged her to move onto the swing set, which she wasn't thrilled about. She simply wants to do what the other kids do, and today was all about riding bikes.
For the record, of course in the past I have tried to stick right on top of her, and I have run hundreds of laps around that darn circle with her. After some time, Kaitlyn told me in no uncertain terms to get the heck away from her because she can do it by herself. As she told me, she is of course six years old, and didn't I see that even the three year olds were allowed to ride by themselves??? Sometimes she clearly finds me so totally annoying! She has gone so far as to give me a little shove when I was walking next to her and told me to go away. Today she made it around the circle probably 10 times with no problem. It was when she was stopped and sitting perfectly still that she toppled over. I think that she was looking down at the pedals and just fell straight to the ground banging her forehead. Twice. Ugh.
Of course she still wouldn't let me run by her side. Of course she still insisted on doing this on her own. So what's a mother to do? If I let her do it on her own, I feel like I'm putting her in peril. She clearly could fall and get hurt. If I don't let her do it on her own, am I stifling her sense of independence that we have worked so hard to foster for so many years? Would not allowing her to ride her bike on her own send her the message that she actually can't do something her friends do for the first time?
So really, what's a mother to do???
Tuesday, August 10, 2010
Beach Vacation
We just got back from a great week at the beach! It was so nice to take a break from our hectic schedule and get away together. We had fantastic weather (which never happens on our vacations), and got to the beach nearly every day.
The kids really enjoyed taking a walk to a part of the beach where at low tide they could hunt for crabs. The walk to get there was about a 1/4 mile long, which I would normally think would be daunting for Kaitlyn. The first day, Chris and I held her hands and walked with her on the way there, then I put her on my back when we headed back. The second day, we brought her walker which she can use on the hard-packed sand. Well, in typical Kaitlyn style, she walked all of 10 steps with her walker, then decided to leave it behind telling us she doesn't need it. Further, just to prove how independent she is she also refused to hold our hands, and took off walking the 1/4 mile stretch on her own. Although she was undoubtedly exhausted, she walked the whole way there and the whole way back ON HER OWN!!! She fell once or twice, but popped right back up and kept going. She grabbed my hand a couple of times, but for the most part she managed that entire walk on her own. Her determination is so admirable, and her will power is unmatched! Poor Chris on the other hand was stuck carrying her walker both ways! As you can imagine, that was the last day her walker made it onto the beach!!!
She also showed off her new found love for the game of bocce. What was most astounding was the fact that she didn't use her walker at all! She stood in line waiting her turn, then stepped up and threw the ball time and again (by the way, she's a pretty good shot!). Another new sport for Kaitlyn is boogie-boarding. She tried it for the first time and loved it!
One day I was sitting in my beach chair watching the kids play. I looked at Kaitlyn who was singing a song and dancing around on the beach. I have to admit that in that moment I teared up a little. Here I was watching my little girl dance around like a ballerina without any trouble at all. This is the same girl who a year ago couldn't get off the floor without assistance, and who could only sustain very short distances walking independently. She has truly come such a long way!
I credit her recent accomplishments to a variety of factors... 1.) Serial Casting - This was done back in the fall, and by wearing casts at night she has maintained her ability to walk/stand with her feet flat. 2.) Physical Therapy - Thank goodness for Miss Cheryl! She keeps Kaitlyn well-stretched and works all of the important muscles that really need it! 3.) Dance Class - This one is a bit of a surprise. We signed up for dance to give Kaitlyn something fun to do, but I think that dance has really helped her balance, stamina, and coordination. 4.) Sheer will - Honestly I don't think any of the other factors would have been as helpful if Kaitlyn didn't have the determination to do so well!!!
So, as we get ready to start thinking about back-to-school shopping, I'm trying to hold onto summer as long as I can! Here are a few pictures from our vacation...
The kids really enjoyed taking a walk to a part of the beach where at low tide they could hunt for crabs. The walk to get there was about a 1/4 mile long, which I would normally think would be daunting for Kaitlyn. The first day, Chris and I held her hands and walked with her on the way there, then I put her on my back when we headed back. The second day, we brought her walker which she can use on the hard-packed sand. Well, in typical Kaitlyn style, she walked all of 10 steps with her walker, then decided to leave it behind telling us she doesn't need it. Further, just to prove how independent she is she also refused to hold our hands, and took off walking the 1/4 mile stretch on her own. Although she was undoubtedly exhausted, she walked the whole way there and the whole way back ON HER OWN!!! She fell once or twice, but popped right back up and kept going. She grabbed my hand a couple of times, but for the most part she managed that entire walk on her own. Her determination is so admirable, and her will power is unmatched! Poor Chris on the other hand was stuck carrying her walker both ways! As you can imagine, that was the last day her walker made it onto the beach!!!
She also showed off her new found love for the game of bocce. What was most astounding was the fact that she didn't use her walker at all! She stood in line waiting her turn, then stepped up and threw the ball time and again (by the way, she's a pretty good shot!). Another new sport for Kaitlyn is boogie-boarding. She tried it for the first time and loved it!
One day I was sitting in my beach chair watching the kids play. I looked at Kaitlyn who was singing a song and dancing around on the beach. I have to admit that in that moment I teared up a little. Here I was watching my little girl dance around like a ballerina without any trouble at all. This is the same girl who a year ago couldn't get off the floor without assistance, and who could only sustain very short distances walking independently. She has truly come such a long way!
I credit her recent accomplishments to a variety of factors... 1.) Serial Casting - This was done back in the fall, and by wearing casts at night she has maintained her ability to walk/stand with her feet flat. 2.) Physical Therapy - Thank goodness for Miss Cheryl! She keeps Kaitlyn well-stretched and works all of the important muscles that really need it! 3.) Dance Class - This one is a bit of a surprise. We signed up for dance to give Kaitlyn something fun to do, but I think that dance has really helped her balance, stamina, and coordination. 4.) Sheer will - Honestly I don't think any of the other factors would have been as helpful if Kaitlyn didn't have the determination to do so well!!!
So, as we get ready to start thinking about back-to-school shopping, I'm trying to hold onto summer as long as I can! Here are a few pictures from our vacation...
Monday, July 26, 2010
Kaitlyn Playing Soccer 7/10
We had a little bit of World Cup Fever here this summer. The kids had fun cheering on the U.S. and learned a little bit more about the game. Connor has been obsessed with soccer for a year now, and we are all looking forward to his first soccer season this year.
What I didn't know is that Kaitlyn is apparently a soccer player too! The other night she decided she was going to kick the soccer ball around, and made it clear that she wasn't going to use her walker to do it. Honestly, I had no idea if she was going to be able to do it. I had kicked the ball with her while she was in her walker, but she really hasn't tried to do it without using her walker - until now!!! Why on earth would I ever question her? I should know by now that if she says she's going to do something, she's going to do it! You just have to love that kind of determination!!!
What I didn't know is that Kaitlyn is apparently a soccer player too! The other night she decided she was going to kick the soccer ball around, and made it clear that she wasn't going to use her walker to do it. Honestly, I had no idea if she was going to be able to do it. I had kicked the ball with her while she was in her walker, but she really hasn't tried to do it without using her walker - until now!!! Why on earth would I ever question her? I should know by now that if she says she's going to do something, she's going to do it! You just have to love that kind of determination!!!
Saturday, June 26, 2010
Kaitlyn's Dance Recital
Two years ago when we moved from NC to NH, Chris and I brought Kaitlyn to meet several doctors before finding the team that works best for her. During one of those meetings, we met a doctor (who shall remain nameless) who I can most kindly describe as a complete imbecile. Within the first 10 minutes of meeting us, and after giving Kaitlyn's medical records a very cursory glance, he told us his thoughts on her. Here are some quotes that have stuck in my mind...
*WHEN ASKED ABOUT SUGGESTIONS FOR HER PHYSICAL THERAPY SCHEDULE: "You should stop all of the physical therapy. It's not going to make any difference for her. Her condition is what it is, and physical therapy isn't going to change that."
*WHEN ASKED HOW HE SAW HER WALKING PROGRESSING IN THE FUTURE: "She will most likely always need a walker, and I don't see her graduating to crutches, never mind independent walking."
*I FORGET WHERE THIS SENTENCE ENDED BECAUSE I WENT INTO SHOCK AFTER THE FIRST SEVEN WORDS: "When she's older and requires a wheelchair..."
*WHEN ASKED ABOUT SUGGESTIONS FOR ACTIVITIES FOR HER TO JOIN SUCH AS SWIMMING, DANCING, SKIING, ETC.: "As for sports or activities, you should probably lower your expectations."
I think you get the drift of this guy's Debbie-Downer attitude. The good news is that Chris and I left there not feeling devastated by his comments, but instead feeling that the guy clearly got his medical license out of a cereal box. For the record, we have since found a great team of doctors who have a very positive outlook for Kaitlyn's future, and who share our philosophy that Kaitlyn can and will do anything she puts her mind to. So, to the doctor who shall remain nameless...
1. Kaitlyn can now walk in several environments WITHOUT HER WALKER.
2. We have happily continued a busy physical therapy schedule over the past two years, to which we directly attribute many of the huge successes Kaitlyn has achieved.
3. All other doctors who have ever met Kaitlyn (including her new super fabulous team on which you will not have a spot) have assured us that the possibility of her needing a wheelchair in the future is very, very slim.
4. As for activities/sports...Chris recently described Kaitlyn as "A dancer, a skier, a swimmer and a scholar." So take that! As further proof of her indomitable spirit, her will to succeed, her zest for life, and her ability to overcome her challenges to achieve any goal she sets for herself, I present to you KAITLYN'S VERY FIRST DANCE RECITAL!!!
*WHEN ASKED ABOUT SUGGESTIONS FOR HER PHYSICAL THERAPY SCHEDULE: "You should stop all of the physical therapy. It's not going to make any difference for her. Her condition is what it is, and physical therapy isn't going to change that."
*WHEN ASKED HOW HE SAW HER WALKING PROGRESSING IN THE FUTURE: "She will most likely always need a walker, and I don't see her graduating to crutches, never mind independent walking."
*I FORGET WHERE THIS SENTENCE ENDED BECAUSE I WENT INTO SHOCK AFTER THE FIRST SEVEN WORDS: "When she's older and requires a wheelchair..."
*WHEN ASKED ABOUT SUGGESTIONS FOR ACTIVITIES FOR HER TO JOIN SUCH AS SWIMMING, DANCING, SKIING, ETC.: "As for sports or activities, you should probably lower your expectations."
I think you get the drift of this guy's Debbie-Downer attitude. The good news is that Chris and I left there not feeling devastated by his comments, but instead feeling that the guy clearly got his medical license out of a cereal box. For the record, we have since found a great team of doctors who have a very positive outlook for Kaitlyn's future, and who share our philosophy that Kaitlyn can and will do anything she puts her mind to. So, to the doctor who shall remain nameless...
1. Kaitlyn can now walk in several environments WITHOUT HER WALKER.
2. We have happily continued a busy physical therapy schedule over the past two years, to which we directly attribute many of the huge successes Kaitlyn has achieved.
3. All other doctors who have ever met Kaitlyn (including her new super fabulous team on which you will not have a spot) have assured us that the possibility of her needing a wheelchair in the future is very, very slim.
4. As for activities/sports...Chris recently described Kaitlyn as "A dancer, a skier, a swimmer and a scholar." So take that! As further proof of her indomitable spirit, her will to succeed, her zest for life, and her ability to overcome her challenges to achieve any goal she sets for herself, I present to you KAITLYN'S VERY FIRST DANCE RECITAL!!!
Wednesday, June 23, 2010
The Graduate
Well, Kaitlyn's all grown up - she graduated Kindergarten! I have such mixed emotions about this milestone! On one hand, I'm so proud of her and can't help but reflect on all that she's overcome to get to this day. On the other hand, I'm really not ready for her to go off to the big world of first grade in a couple of months!
If you had told me a couple of years ago that by the time she graduated Kindergarten she would be walking independently in all kinds of environments, that she would be in a dance class with typically developing children, or that she would be a super star skier I may have thought you were crazy, yet here she is doing all of the things and more! The best news that came out of Kindergarten was the reassurance that Kaitlyn's cognitive skills are perfectly intact. In some children CP impacts both physical and cognitive abilities. Although we had Kaitlyn tested before she started Kindergarten and she always scored very well, we always knew that the true test would come when she was in a class with her peers. During my first parent-teacher conference I was told that Kaitlyn had been placed in the top math group and the top reading group. I nearly burst into tears as her teacher explained to me how well she was doing in all academic areas. Go Kaitlyn! Go Kaitlyn! Go Kaitlyn!
So, as we look forward to a summer filled with swim lessons, music camp, teddy bear camp and a beach vacation, I couldn't be more proud of Kaitlyn's accomplishments, or more hopeful for what I'm sure will be a very rewarding year in first grade.
Kaitlyn and her super fabulous teacher Mrs. Childs
Kaitlyn and Daddy at her year-end celebration
Reciting the pledge of allegiance
If you had told me a couple of years ago that by the time she graduated Kindergarten she would be walking independently in all kinds of environments, that she would be in a dance class with typically developing children, or that she would be a super star skier I may have thought you were crazy, yet here she is doing all of the things and more! The best news that came out of Kindergarten was the reassurance that Kaitlyn's cognitive skills are perfectly intact. In some children CP impacts both physical and cognitive abilities. Although we had Kaitlyn tested before she started Kindergarten and she always scored very well, we always knew that the true test would come when she was in a class with her peers. During my first parent-teacher conference I was told that Kaitlyn had been placed in the top math group and the top reading group. I nearly burst into tears as her teacher explained to me how well she was doing in all academic areas. Go Kaitlyn! Go Kaitlyn! Go Kaitlyn!
So, as we look forward to a summer filled with swim lessons, music camp, teddy bear camp and a beach vacation, I couldn't be more proud of Kaitlyn's accomplishments, or more hopeful for what I'm sure will be a very rewarding year in first grade.
Kaitlyn and her super fabulous teacher Mrs. Childs
Kaitlyn and Daddy at her year-end celebration
Reciting the pledge of allegiance
Wednesday, May 26, 2010
My Boy
While this blog is dedicated to sharing information about Kaitlyn's world, I feel compelled to write a post about someone else.
Connor was born on January 9, 2006, and has filled my life with joy ever since. I know that sounds a little bit like that thing every mother says or at least thinks she should say, but in my case it really is true.
Connor was the happiest, sweetest little baby ever. He spent his entire infancy sleeping, eating and smiling. He would burst into unstopable giggles just because I smiled at him. As he grew, he continued to showcase the same disposition he had as an infant. To this day he still wakes up every single day with a smile. He goes to sleep every night with a smile. There is never a question as to what mood Connor will be in, because he's always happy.
As he got older, I watched in awe as Connor easily reached all of his milestones. By his first birthday, he had sat up, crawled and walked just when the books all said he would. By Kaitlyn's first birthday, she wasn't able to do any of those things.
I have read that siblings of children with special needs often feel left out and unsure of their place in the family. I can honestly tell you that at times Connor has been expected to take a backseat to Kaitlyn's needs. This little guy has spent hours and hours at doctor's appointments with Kaitlyn. Following her surgery in 2006, Kaitlyn was required to have daily physical therapy. So, at 11 months old, Connor began attending these daily sessions as well.
Over the last few years what I have found most amazing is the level of compassion Connor has showed Kaitlyn. When he was 18 months old, we were at a family cookout in New Jersey. Connor was having a blast chasing after his little cousins who were running all over the yard. At one point, all of the kids were in a little playhouse. I watched from across the yard as the door swung open and the kids came bounding out one at a time. Connor was the last one to run out the door ready to catch his older cousins. I found it strange that even though he was having so much fun, he suddenly stopped and turned back toward the little house. As he opened the door, I realized that Kaitlyn was inside. She had apparently been knocked to the ground and was unable to get up. Connor reached out his hand and said "C'mon Mimi (that's what he called her for his first 3 years)". In that moment, I knew that not only did he love his sister, but that he would always look out for her.
Connor is truly Kaitlyn's best friend, and her number one fan. He cheers right along with Chris and me when Kaitlyn accomplishes something new. Connor is incredibly selfless, which is just so unexpected from a four year old. Connor brings such joy and happiness to this family. He is our comic relief, our little engineer, and our sports fanatic. I am so thankful everyday that he is Kaitlyn's brother, and I feel incredibly lucky that he is my son.
Making Kaitlyn Smile
Sunday, May 9, 2010
Party Girl
"Be careful what you wish for, because you just might get it." I never really got that saying. I mean really, wouldn't you think that if you truly wish for something, you would be thrilled to get it? Well, I think I get it now.
When Kaitlyn was first diagnosed, I spent lots of time wondering what her future would be like. I was especially concerned about her social life. Will she have friends? Will she be invited to birthday parties? Will she go to her prom? Will she get married? Etc.............
The good news is that I tend to worry less and less about these things as time goes on. Kaitlyn rocks. Seriously, she is super sweet, really kind, very silly, and lots of fun to be around. I can't believe that I ever worried about this child making friends. As she nears the end of her year spent in Kindergarten, I am thrilled to report that Kaitlyn has made lots of really great friends. She has friends from school, the neighborhood, and dance class.
This brings me back to the days when I would pray that she would be invited to a birthday party with her peers. As it turns out, her social calendar rivals the First Lady's. She has been invited to countless parties over the last couple of years. Ahhhh - I can breathe a big sigh of relief.
However, I am finding that my experience of being the mom of a birthday party guest is vastly different than most parents. Here is just one example of what I mean...We had only lived here about a month when Kaitlyn was invited to her first party. It happened to be for her best little girlfriend from school, so I knew we were going. As it turned out, it was at one of those bouncy places. Chris and I have always said that Kaitlyn WILL participate in any event that her peers do, and we will do whatever it takes to make that happen. Who knew what "whatever it takes" really meant??? First, I made a preemptive visit to the facility. I asked for a tour, and asked six thousand questions about safety, if parents could get on the inflatables, the number of children allowed at a time on each bouncy attraction, and if they even allow children with physical challenges into a place like that. After getting my questions answered, and signing my life away on a variety of waivers, I felt ready to tackle the party.
The day of the party Kaitlyn and I arrived to find all of the moms and dads sitting on some benches, drinking their Starbucks coffee, and chit-chatting about all kinds of trivial topics as their kids ran around from bouncy thing to bouncy thing. As the parents sat and had their own party, I spent the next hour and a half holding, dragging, lifting, and bouncing Kaitlyn on every one of those darn bouncy houses, obstacle courses, basketball courts and ball pits. After climbing a set of 40-foot inflatable steps with a four year old in my arms then flying down a crazy slide with her twice, I thought I was going to pass out. I mean really, I'm in no shape for this kind of workout! However, when Kaitlyn said she wanted to do it again (as all of her friends climbed up those darn steps like monkeys scaling a tree at the zoo) I took a deep breath and said "sure honey". It was then that a strapping young man, nearly half my age, took pity on me. He was wearing a "Bounce-U" shirt, and had been running around with all of the kids at the party. He clearly showed none of the signs of exhaustion and fatigue that I was feeling. He turned to me and said "I can take her up the slide if you'd like". While many parents would hesitate to send your child off with a stranger, I happily told him that would be great. Kaitlyn (for better or for worse) is very comfortable with new people, so off she went. I was so thankful that he would step in and help me, even if it was only for a couple of minutes.
Since that day, Chris and I have taken Kaitlyn to princess parties, magic shows, bouncy places, discovery centers, and all kinds of house parties. We have continued to do whatever it takes to make sure she can participate in all of the activities ever other child does. While each time I have to admit that I'd love to sit and chat with the moms, I'm just thrilled that Kaitlyn can enjoy these parties. If that means that I have to miss out on the coffee drinking chit-chat, so be it.
By the way, I have a confession to make. I think that Chris and I may need to tweak our "We will do whatever it takes" statement when it comes to what we are willing to do to ensure that Kaitlyn can attend every party that she wants to. A few months ago, she was invited to a pool party. Gulp. The only way she can go in the water is if I am with her. Can you imagine of having to get into a bathing suit in front of the Starbucks club? Can you think of anything more horrifying??? The saving grace was that she was actually invited to another party that day. It was a princess party at a friend's house - much more convenient for us!!! I was off the hook, and didn't have to even consider the bathing suit situation. I have to admit that I've thought about it since then, and really wonder what I will do if the situation arises again, and we don't have another commitment. I really, really can't see myself splashing around with a bunch of 6 year-olds while all the other parents watch, but how can I deny Kaitlyn that experience especially considering my "Whatever it takes" philosophy. As the warm weather approaches, stay tuned for an update if heaven forbid a pool party invitation comes our way. With that, I'll leave you with the question of what would you do - 1) Expose yourself in a bathing suit in front of the fully-clothed PTA moms for your child's benefit, or 2) Make up a good excuse and spend the day fully dressed...
When Kaitlyn was first diagnosed, I spent lots of time wondering what her future would be like. I was especially concerned about her social life. Will she have friends? Will she be invited to birthday parties? Will she go to her prom? Will she get married? Etc.............
The good news is that I tend to worry less and less about these things as time goes on. Kaitlyn rocks. Seriously, she is super sweet, really kind, very silly, and lots of fun to be around. I can't believe that I ever worried about this child making friends. As she nears the end of her year spent in Kindergarten, I am thrilled to report that Kaitlyn has made lots of really great friends. She has friends from school, the neighborhood, and dance class.
This brings me back to the days when I would pray that she would be invited to a birthday party with her peers. As it turns out, her social calendar rivals the First Lady's. She has been invited to countless parties over the last couple of years. Ahhhh - I can breathe a big sigh of relief.
However, I am finding that my experience of being the mom of a birthday party guest is vastly different than most parents. Here is just one example of what I mean...We had only lived here about a month when Kaitlyn was invited to her first party. It happened to be for her best little girlfriend from school, so I knew we were going. As it turned out, it was at one of those bouncy places. Chris and I have always said that Kaitlyn WILL participate in any event that her peers do, and we will do whatever it takes to make that happen. Who knew what "whatever it takes" really meant??? First, I made a preemptive visit to the facility. I asked for a tour, and asked six thousand questions about safety, if parents could get on the inflatables, the number of children allowed at a time on each bouncy attraction, and if they even allow children with physical challenges into a place like that. After getting my questions answered, and signing my life away on a variety of waivers, I felt ready to tackle the party.
The day of the party Kaitlyn and I arrived to find all of the moms and dads sitting on some benches, drinking their Starbucks coffee, and chit-chatting about all kinds of trivial topics as their kids ran around from bouncy thing to bouncy thing. As the parents sat and had their own party, I spent the next hour and a half holding, dragging, lifting, and bouncing Kaitlyn on every one of those darn bouncy houses, obstacle courses, basketball courts and ball pits. After climbing a set of 40-foot inflatable steps with a four year old in my arms then flying down a crazy slide with her twice, I thought I was going to pass out. I mean really, I'm in no shape for this kind of workout! However, when Kaitlyn said she wanted to do it again (as all of her friends climbed up those darn steps like monkeys scaling a tree at the zoo) I took a deep breath and said "sure honey". It was then that a strapping young man, nearly half my age, took pity on me. He was wearing a "Bounce-U" shirt, and had been running around with all of the kids at the party. He clearly showed none of the signs of exhaustion and fatigue that I was feeling. He turned to me and said "I can take her up the slide if you'd like". While many parents would hesitate to send your child off with a stranger, I happily told him that would be great. Kaitlyn (for better or for worse) is very comfortable with new people, so off she went. I was so thankful that he would step in and help me, even if it was only for a couple of minutes.
Since that day, Chris and I have taken Kaitlyn to princess parties, magic shows, bouncy places, discovery centers, and all kinds of house parties. We have continued to do whatever it takes to make sure she can participate in all of the activities ever other child does. While each time I have to admit that I'd love to sit and chat with the moms, I'm just thrilled that Kaitlyn can enjoy these parties. If that means that I have to miss out on the coffee drinking chit-chat, so be it.
By the way, I have a confession to make. I think that Chris and I may need to tweak our "We will do whatever it takes" statement when it comes to what we are willing to do to ensure that Kaitlyn can attend every party that she wants to. A few months ago, she was invited to a pool party. Gulp. The only way she can go in the water is if I am with her. Can you imagine of having to get into a bathing suit in front of the Starbucks club? Can you think of anything more horrifying??? The saving grace was that she was actually invited to another party that day. It was a princess party at a friend's house - much more convenient for us!!! I was off the hook, and didn't have to even consider the bathing suit situation. I have to admit that I've thought about it since then, and really wonder what I will do if the situation arises again, and we don't have another commitment. I really, really can't see myself splashing around with a bunch of 6 year-olds while all the other parents watch, but how can I deny Kaitlyn that experience especially considering my "Whatever it takes" philosophy. As the warm weather approaches, stay tuned for an update if heaven forbid a pool party invitation comes our way. With that, I'll leave you with the question of what would you do - 1) Expose yourself in a bathing suit in front of the fully-clothed PTA moms for your child's benefit, or 2) Make up a good excuse and spend the day fully dressed...
Saturday, May 1, 2010
Holy Cow - A Good Doctor's Visit???
Yes, it's true, we had a great visit to Dr. Webster today. Dr. Webster is Kaitlyn's physiatrist at Tufts New England Medical Center. You may remember him from the aptly titled "So Frustrated" post from January.
Anyway, today was a much, much different day. Kaitlyn went in to have some new bi-valve casts made. Since she went through serial casting in November, she has been wearing a pair of removable casts while she sleeps. Kaitlyn has been able to maintain the awesome results of the casting by wearing these at night. Unfortunately she has lots of problems with the casts. She tends to push her heels up and come out of them during the night, and has also worn through the lining three times and had to have it replaced. Today Dr. Webster called in a friend of his from Children's Hospital who is known to be at the top of the casting game. Unfortunately Kaitlyn had to lay still for an hour while the casting guru, Dr. Webster and Chris worked to get her legs in just the right position to make the casts.
I know I sound like a broken record, but I have to say I was so impressed with her willingness to cooperate without the slightest complaint. She instead regaled the group with stories of her triumphs in dance class and a well thought out explanation of why she felt compelled to write Santa a letter this past week. By the way, the morning after she mailed the letter to Santa, we saw SNOW flurries (yes, during the last week in April!). Kaitlyn was convinced that Santa made it snow as a message to her so that she would know she got his letter. Very, very sweet.
After the casting I was asking Dr. Webster some questions on Kaitlyn's bracing options. As he was giving me his answer, he very casually included the following statement "When she walks completely independently without any assistance, and I believe she will..." - I didn't hear a word he said after that. Instead I stopped him in the middle of his next sentence with an inappropriate yet unavoidable outburst. I explained to him (in an oddly high-pitched voice) that his statement meant more than he could ever imagine to us. He is only the second doctor ever to tell us that he believes Kaitlyn will be a fully independent ambulator (second to Dr. Park I might add). All other doctors have given us a standard "Well, there are no guarantees, and no way to predict the future, blah, blah, blah" type explanations. I had given up asking doctors to predict Kaitlyn's future walking ability, mostly because I was afraid of what they might say. Hearing Dr. Webster so nonchalantly state that Kaitlyn WILL walk independently was the most unexpected gift I can imagine. All of you other special needs parents out there will be able to understand that with each doctor's visit comes more than a little anxiety. The truth is we never know what news to expect. Today was a good day, and tonight I feel hopeful.
When we left the hospital, we got to enjoy the most beautiful spring afternoon in the city. We took a walk through the Boston Common and Public Garden. We went for a really peaceful swan boat ride, visited the Make Way For Duckling statues, and had a spin on the carousel. It really was a perfect afternoon.
The best part of the day? Kaitlyn spent some time introducing her new American Girl Doll "Lanie" to everyone at the hospital. The super-sweet casting technician decided that Lanie should experience everything that Kaitlyn does. Here is the result...
Anyway, today was a much, much different day. Kaitlyn went in to have some new bi-valve casts made. Since she went through serial casting in November, she has been wearing a pair of removable casts while she sleeps. Kaitlyn has been able to maintain the awesome results of the casting by wearing these at night. Unfortunately she has lots of problems with the casts. She tends to push her heels up and come out of them during the night, and has also worn through the lining three times and had to have it replaced. Today Dr. Webster called in a friend of his from Children's Hospital who is known to be at the top of the casting game. Unfortunately Kaitlyn had to lay still for an hour while the casting guru, Dr. Webster and Chris worked to get her legs in just the right position to make the casts.
I know I sound like a broken record, but I have to say I was so impressed with her willingness to cooperate without the slightest complaint. She instead regaled the group with stories of her triumphs in dance class and a well thought out explanation of why she felt compelled to write Santa a letter this past week. By the way, the morning after she mailed the letter to Santa, we saw SNOW flurries (yes, during the last week in April!). Kaitlyn was convinced that Santa made it snow as a message to her so that she would know she got his letter. Very, very sweet.
After the casting I was asking Dr. Webster some questions on Kaitlyn's bracing options. As he was giving me his answer, he very casually included the following statement "When she walks completely independently without any assistance, and I believe she will..." - I didn't hear a word he said after that. Instead I stopped him in the middle of his next sentence with an inappropriate yet unavoidable outburst. I explained to him (in an oddly high-pitched voice) that his statement meant more than he could ever imagine to us. He is only the second doctor ever to tell us that he believes Kaitlyn will be a fully independent ambulator (second to Dr. Park I might add). All other doctors have given us a standard "Well, there are no guarantees, and no way to predict the future, blah, blah, blah" type explanations. I had given up asking doctors to predict Kaitlyn's future walking ability, mostly because I was afraid of what they might say. Hearing Dr. Webster so nonchalantly state that Kaitlyn WILL walk independently was the most unexpected gift I can imagine. All of you other special needs parents out there will be able to understand that with each doctor's visit comes more than a little anxiety. The truth is we never know what news to expect. Today was a good day, and tonight I feel hopeful.
When we left the hospital, we got to enjoy the most beautiful spring afternoon in the city. We took a walk through the Boston Common and Public Garden. We went for a really peaceful swan boat ride, visited the Make Way For Duckling statues, and had a spin on the carousel. It really was a perfect afternoon.
The best part of the day? Kaitlyn spent some time introducing her new American Girl Doll "Lanie" to everyone at the hospital. The super-sweet casting technician decided that Lanie should experience everything that Kaitlyn does. Here is the result...
Saturday, April 10, 2010
SHE'S 6!!!
On March 31st we celebrated Kaitlyn's 6th birthday! I know it's cliche, but I really can't imagine where the time has gone.
Every year on her birthday Chris and I tend to reminisce about the day she was born. It seems like 6 years later the emotions of that day are still right on the surface. We talked a lot about the shock we felt when she was born that day. We talked even more about our feelings of incredible thankfulness that she was born that day. I think it's important to remember how lucky we all are to have her alive and well, and to never forget how close we came to having a different outcome. Focusing on the feelings of thankfulness and appreciation really help me to deal with some of the challenges in Kaitlyn's life.
As much as I'd like to keep Kaitlyn frozen in time as the sweet little toddler who I could keep safe and sound with me during every hour of the day, I am trying to accept the fact that she's getting older! She seems so much more mature in her thinking these days. I'm sure that's a good thing, but it's throwing me for a loop. I am suddenly getting questions thrown at me all day long, such as: "Mommy, why can't I take the big bus with all of the other kindergartners?", and "Mommy, why do I always have to sit in a different chair than you, Daddy, and Connor?", and "Mommy, can I get a scooter?"...
I'm doing my best to answer her questions honestly, which I vowed a long time ago to always do. However, I'm having a hard time finding a balance of being truthful and not hurting her feelings. You would think I'd be better prepared for these types of questions, but clearly that's not the case! Oh well, one day at a time, or one hour at a time, or one question at a time...
So, on the bright side, Kaitlyn is making some big strides!!! The nice weather has allowed her to spend lots of time outdoors during the last few weeks, which she really hasn't done since the fall. What a difference a few months makes!!! Here is the short list of things she is now doing that she wasn't able to do in November...
1. Swing on the swing set by herself...If I give her a push, she can now pump her legs and keep momentum going. Huge change!
2. Ride her bike all the way around the circle up the street by herself...I always had to give her a few pushes along the way to keep her moving. Now she has the strength to make it all the way around on her own! She actually goes so fast that I can no longer keep up with her by running alongside her. This admittedly makes me super nervous, but really happy for her!
3. Walk all around the yard unassisted...She announced to Chris and I that she no longer needs her walker in the yard. She's doing awesome walking all around, and falls far less often than before. Also, if she does fall, she's now able to get herself back up to standing on her own! A couple of weeks ago she even walked up a very steep hill in our yard all by herself! She is so proud of herself, and I'm so proud of her!!!
Every year on her birthday Chris and I tend to reminisce about the day she was born. It seems like 6 years later the emotions of that day are still right on the surface. We talked a lot about the shock we felt when she was born that day. We talked even more about our feelings of incredible thankfulness that she was born that day. I think it's important to remember how lucky we all are to have her alive and well, and to never forget how close we came to having a different outcome. Focusing on the feelings of thankfulness and appreciation really help me to deal with some of the challenges in Kaitlyn's life.
As much as I'd like to keep Kaitlyn frozen in time as the sweet little toddler who I could keep safe and sound with me during every hour of the day, I am trying to accept the fact that she's getting older! She seems so much more mature in her thinking these days. I'm sure that's a good thing, but it's throwing me for a loop. I am suddenly getting questions thrown at me all day long, such as: "Mommy, why can't I take the big bus with all of the other kindergartners?", and "Mommy, why do I always have to sit in a different chair than you, Daddy, and Connor?", and "Mommy, can I get a scooter?"...
I'm doing my best to answer her questions honestly, which I vowed a long time ago to always do. However, I'm having a hard time finding a balance of being truthful and not hurting her feelings. You would think I'd be better prepared for these types of questions, but clearly that's not the case! Oh well, one day at a time, or one hour at a time, or one question at a time...
So, on the bright side, Kaitlyn is making some big strides!!! The nice weather has allowed her to spend lots of time outdoors during the last few weeks, which she really hasn't done since the fall. What a difference a few months makes!!! Here is the short list of things she is now doing that she wasn't able to do in November...
1. Swing on the swing set by herself...If I give her a push, she can now pump her legs and keep momentum going. Huge change!
2. Ride her bike all the way around the circle up the street by herself...I always had to give her a few pushes along the way to keep her moving. Now she has the strength to make it all the way around on her own! She actually goes so fast that I can no longer keep up with her by running alongside her. This admittedly makes me super nervous, but really happy for her!
3. Walk all around the yard unassisted...She announced to Chris and I that she no longer needs her walker in the yard. She's doing awesome walking all around, and falls far less often than before. Also, if she does fall, she's now able to get herself back up to standing on her own! A couple of weeks ago she even walked up a very steep hill in our yard all by herself! She is so proud of herself, and I'm so proud of her!!!
Sunday, March 21, 2010
Kaitlyn was on Good Morning America!!!
Kaitlyn (with some help from Connor) was on Good Morning America's "Your Three Words" segment this week. Their clip is the last one. If you click on this link then wait for the advertisement to play, you can click on about 2:07 in the segment and you'll see them (they are the last video clip in the segment). I couldn't be more proud!!!
I'm having trouble uploading the link, but you should be able to cut and paste this to another browser...
http://abcnews.go.com/GMA/video/words-shout-louds-10155851
I'm having trouble uploading the link, but you should be able to cut and paste this to another browser...
http://abcnews.go.com/GMA/video/words-shout-louds-10155851
Saturday, March 13, 2010
Kaitlyn's 1st Lost Tooth 3/12/10!!! at OneTrueMedia.com
Yesterday was a big day for Kaitlyn. She lost her first tooth! She is a tough cookie. She said it was driving her crazy and let Chris yank it out without any complaint! However, after it was all said and done she lost her mind! She was suddenly was only able to talk in one word sentences, then had a meltdown. Check out this little video clip to see...
Last night the tooth fairy came. Connor set up a trap to catch her, but had no luck! Kaitlyn made out with some money, so she's happy!
Last night the tooth fairy came. Connor set up a trap to catch her, but had no luck! Kaitlyn made out with some money, so she's happy!
Wednesday, February 24, 2010
Ski Trip 2010
We just got back from a ski trip to the white mountains. We stayed at the gorgeous Mt. Washington hotel, which was a real treat! Kaitlyn announced that she would like to have her wedding in the pink dining room, which seems fitting to me! Here are a couple of pictures of the hotel...
Kaitlyn and Connor both got to ski this year. Kaitlyn is an old pro, and this was Connor's first time trying it. Kaitlyn loves to ski. She had a great team of assistants, all of whom volunteer their time to the adaptive ski program. I am so thankful that so many people take time out of their lives to volunteer for programs like this that give kids who otherwise may miss out on an experience as great as skiing the chance to do it. Kaitlyn's lead volunteer was "Carl". Carl is a grandfather who exudes patience and kindness. He really took a liking to Kaitlyn, as she did to him. They were a great team! Carl tried several different systems to help Kaitlyn ski. She started out in a stander, then moved to a harness-rin type thing, then to a hula-hoop system, then to just letting Kaitlyn hold onto Carl's ski pole, and finally letting her try to ski on her own (which she did for a few feet!). Kaitlyn was up for it all! She tried each and every option with a huge smile on her face. She especially loved riding the chairlift! I was so proud of her. She is a tough little cookie with such an enthusiasm for all that life has to offer. Here are a few pictures of Kaitlyn giving it her best shot...
Getting on the chairlift:
Skiing in the ring:
Stander skiing:
Gold medal winner!
Skiing in the stander:
Skiing on her own!
Connor did a great job for his first time on skis! He took a lesson each day, and seemed to get a little better each time he tried it! I think that the next time we ski, I'll actually take him up on the lift and see if I can teach him myself. It seems to come quite naturally to him. Here are some pictures of Connor...
Getting all suited up!
Ready to go!
Connor skiing!
It really was a great trip! We can't wait to get back to the slopes soon!
Kaitlyn and Connor both got to ski this year. Kaitlyn is an old pro, and this was Connor's first time trying it. Kaitlyn loves to ski. She had a great team of assistants, all of whom volunteer their time to the adaptive ski program. I am so thankful that so many people take time out of their lives to volunteer for programs like this that give kids who otherwise may miss out on an experience as great as skiing the chance to do it. Kaitlyn's lead volunteer was "Carl". Carl is a grandfather who exudes patience and kindness. He really took a liking to Kaitlyn, as she did to him. They were a great team! Carl tried several different systems to help Kaitlyn ski. She started out in a stander, then moved to a harness-rin type thing, then to a hula-hoop system, then to just letting Kaitlyn hold onto Carl's ski pole, and finally letting her try to ski on her own (which she did for a few feet!). Kaitlyn was up for it all! She tried each and every option with a huge smile on her face. She especially loved riding the chairlift! I was so proud of her. She is a tough little cookie with such an enthusiasm for all that life has to offer. Here are a few pictures of Kaitlyn giving it her best shot...
Getting on the chairlift:
Skiing in the ring:
Stander skiing:
Gold medal winner!
Skiing in the stander:
Skiing on her own!
Connor did a great job for his first time on skis! He took a lesson each day, and seemed to get a little better each time he tried it! I think that the next time we ski, I'll actually take him up on the lift and see if I can teach him myself. It seems to come quite naturally to him. Here are some pictures of Connor...
Getting all suited up!
Ready to go!
Connor skiing!
It really was a great trip! We can't wait to get back to the slopes soon!
Thursday, February 4, 2010
A really, really good day...
Tuesday, February 2, 2010. That is a date I'll remember forever.
On that date, an otherwise typical Tuesday, Kaitlyn attended her first dance class.
When Kaitlyn asked me several months ago if she could take a dance class, my immediate response was "sure!". However, finding a class that was willing to take her, as well as a class where I felt she was safe would prove to be more difficult than I could have imagined. I started calling all around the area. Some places just didn't return my phone calls. Others told me that they didn't feel that their program would be a good fit for Kaitlyn. One place offered a class for children with special needs, which I think is AWESOME, but it's really not where Kaitlyn belongs. Putting her in a group made up of children with cognitive or behavioral challenges just doesn't make sense to me.
Then one day Kaitlyn's physical therapist, "Miss Cheryl", told me about a program that she thought may be a good fit for Kaitlyn. In typical Cheryl fashion, she called the owner of the dance studio and filled her in on Kaitlyn's challenges (as well as her many sweet and special qualities I'm guessing!). The owner called me, and before I knew it we were in for a visit. Cheryl came along for a meeting with the owner. We spent 45 minutes going over all the ways she could make Kaitlyn's experience both safe and fun. In case you haven't heard me mention it before, Cheryl rocks.
So, on Tuesday Kaitlyn got all decked out in her new black leotard, pink tights and skirt, and waltzed into the studio. The class she's taking is a combination of tap and ballet. Honestly I couldn't care less if Kaitlyn actually learns any of the proper dance steps, I'm just so thrilled that she can participate in a class like this just like any other 5 year old. She isn't the least bit bothered by the fact that she's in there with her braces or her walker. She's just over the moon with joy to be there. As I watched her through the glass I was overwhelmed with happiness seeing my little dancer spin, jump, and twirl.
February 2, 2010 - A really, really good day!
On that date, an otherwise typical Tuesday, Kaitlyn attended her first dance class.
When Kaitlyn asked me several months ago if she could take a dance class, my immediate response was "sure!". However, finding a class that was willing to take her, as well as a class where I felt she was safe would prove to be more difficult than I could have imagined. I started calling all around the area. Some places just didn't return my phone calls. Others told me that they didn't feel that their program would be a good fit for Kaitlyn. One place offered a class for children with special needs, which I think is AWESOME, but it's really not where Kaitlyn belongs. Putting her in a group made up of children with cognitive or behavioral challenges just doesn't make sense to me.
Then one day Kaitlyn's physical therapist, "Miss Cheryl", told me about a program that she thought may be a good fit for Kaitlyn. In typical Cheryl fashion, she called the owner of the dance studio and filled her in on Kaitlyn's challenges (as well as her many sweet and special qualities I'm guessing!). The owner called me, and before I knew it we were in for a visit. Cheryl came along for a meeting with the owner. We spent 45 minutes going over all the ways she could make Kaitlyn's experience both safe and fun. In case you haven't heard me mention it before, Cheryl rocks.
So, on Tuesday Kaitlyn got all decked out in her new black leotard, pink tights and skirt, and waltzed into the studio. The class she's taking is a combination of tap and ballet. Honestly I couldn't care less if Kaitlyn actually learns any of the proper dance steps, I'm just so thrilled that she can participate in a class like this just like any other 5 year old. She isn't the least bit bothered by the fact that she's in there with her braces or her walker. She's just over the moon with joy to be there. As I watched her through the glass I was overwhelmed with happiness seeing my little dancer spin, jump, and twirl.
February 2, 2010 - A really, really good day!
Wednesday, January 27, 2010
Wishing for a break...
***I HOPE YOU'LL READ THIS POST, BUT IF NOT, PLEASE AT LEAST CHECK OUT THE LINK I'VE INCLUDED AT THE BOTTOM...
"I take a look at my daughter and see what she's going through and how hard she's fighting and it really helps give me the strength I need to get through this."
I had no idea then that years later that quote would continue to ring so true. Here's a link to that news story...
http://www.wral.com/news/local/story/110896/
Okay, I'll admit it. I'm wishing for a break. I'm not talking about your typical break, like a day at a spa, a night out with my husband, or weekend away with my family. I'm wishing for a break from cerebral palsy. Wouldn't it be amazing if Kaitlyn could be granted a vacation from all that she deals with, even for 1 day???
On a day to day basis, we just seem to do whatever needs to be done to get through that day. Right now a typical day for me and Kaitlyn includes doing some stretches, getting her hooked up to her ESTIM, specially thickening all of her liquids, putting on her braces during the day and strapping her into her casts at night. The day also includes reminding her to get her heels down when she walks, and get her legs in the right position when she sits on the floor. It includes making sure she's positioned just right each time she sits in a chair to eat, do her homework, color, or play a game. Throughout the day there are a million little things that I am constantly doing or thinking about to ensure that she's well taken care of.
I have to say that most days I just do all of the things I mentioned above without much thought. However, tonight I had some time to think about the bigger picture. Kaitlyn has been sick all week with a fever, cough and raging ear infection. She is having lots of trouble sleeping because she's been coughing so much. I went into her room tonight and found her quietly whimpering because she's so tired but just can't sleep. I picked her up, wrapped her in a blanket and sat in a rocking chair with her. It's been a long time since I've rocked her to sleep, now that she's a big 5 year old! As I held her in my lap and watched her sleep, I rocked for nearly an hour just thinking about all that she's been through. I started to think back to all of the times I've rocked her when she was sick or hurt, and realized that there were way too many of those times.
I have very clear memories of holding her tiny body in the NICU, and rocking her for hours. I remember her having wires and tubes coming and going in and out of her little body and being overcome with sadness that she had to deal with all of that.
I also thought about the time she was hospitalized with the flu as an infant. She was so, so sick then. Her little lungs were seriously underdeveloped due to her prematurity, and she was having great difficulty breathing. I remember rocking her in her hospital room and watching a story on the news about how another little baby in North Carolina had died from the flu that week. I stayed up that entire first night with her. I held her, rocked her, and watched her sleep - the whole time being unbelievably frightened that she wouldn't get through that flu.
I then started thinking about the time I had to hold her down on a doctor's exam table while he plunged huge needles directly into her calf muscles to send botox to her muscles while she screamed out in pain.
I thought about holding her in my arms before she went into her SDR surgery. I also thought about having to let her go when a doctor took her from my arms outside of the operating room. I then thought about holding her for hours in the hospital as she recovered from that surgery.
Finally I remembered just a couple of months ago holding her week after week as doctors manipulated her legs and casted each leg, only to cut the casts off a week later and do it all over again.
This little girl has been through so much. Sometimes I feel like it's just too much. I start to think that maybe we should just take a break from all of it. I'd love to throw her braces out the window and go buy her all of the fashionable shoes all of the other girls wear. I'd love to throw her walker and crutches out that same window, and let her run across the lawn like other children. I'd love to just let her sit, move and walk however she wants to without me hovering over her. I'd love to take a break from physical therapy and doctor's visits and just sign her up for swimming, gymnastics, soccer, or whatever the heck else a typical 5 year old spends her time doing.
While I'd love to take that break and do everything that I just talked about, clearly I know that's not an option. At the end of the day today, and at the end of the day everyday, I will continue to do everything I can to help Kaitlyn reach her greatest potential. You see Kaitlyn never asks for a break. She wakes up every day with a vigor for life and an iron will to do her best. She is incredibly determined. If she can continue to endure all that she does with a smile on her face and a willingness to work her little butt off, the very least I can do is be by her side to lend a helping hand.
Whenever I have a minute where I feel like I don't have the strength to deal with this, I see how strong Kaitlyn is and immediately feel stronger.
"I take a look at my daughter and see what she's going through and how hard she's fighting and it really helps give me the strength I need to get through this."
I had no idea then that years later that quote would continue to ring so true. Here's a link to that news story...
http://www.wral.com/news/local/story/110896/
Thursday, January 21, 2010
Soooooo FRUSTRATED!!!
Okay, I've waited a full week to write this post in the hopes that my frustration would subside, but clearly that hasn't happened!!! So here's the scoop for what happened last Thursday with some appointments scheduled at Tufts-New England Medical Center with Dr. Webster (physiatrist), Dr. Braun (orthopedist), and x-rays...
* Kaitlyn had an x-ray appointment at 12:00.
* She had appointments with Dr. Webster & Dr. Braun at 12:30.
* She got her x-rays done by 12:30 - not bad.
* We then waited in the waiting room for an hour and a half, until 2:00.
* At 2:00, we got put into an exam room.
* At 2:55 (we'd now been there 3 hours and had yet to see a doctor), I heard Dr. Webster outside our room say to someone: "Is that meeting at 3:00? Yes? Then I'm going to have to fly through this next appointment". At that point, he entered Kaitlyn's room along with Dr. Braun and three other people.
* While Dr. Braun immediately started going over Kaitlyn's x-rays with me, Dr. Webster began to examine Kaitlyn. Upon seeing the marks on her legs that indicate where the ESTIM leads go, he asked me a couple of questions relating to her home ESTIM use, which I answered. He then suggested a change to the ESTIM protocol, but provided no explanation to me as to how that will work, and didn't give me a chance to ask anything. He was in the room for literally three minutes when he told me that he had to go meet with a hospital executive. I of course objected to his departure, and held up a list of questions that I had prepared to ask him. He then asked me if I could wait for him to return. I told him that I couldn't. I mean really, did he expect me to wait another 3 hours on the slim chance he might find the time to see Kaitlyn???
I was so upset! Poor Kaitlyn was taken out of school, and waited nearly 3 hours to see him. I lugged my big binder of medical records, Kaitlyn's walker, crutches, braces and casts with me only to have him completely blow us off. I had so many important questions about her care, including questions on bracing, equipment, swallowing problems, ESTIM protocol, therapy schedules, and strength training.
I have written a letter to him outlining my disappointment, and asking him for some suggestions on how to avoid this moving forward. I offered some feedback to him as to how as the mother of a child with a serious medical condition, I rely heavily on his expertise to provide guidance for her overall care and was greatly disappointed in his lack of professionalism and patient care. I have yet to mail the letter because his office staff has been nice enough to call me a couple of times to try to set up a time for me to call Dr. Webster to go over the questions. I've decided that a phone call simply isn't a replacement for a hands-on visit and insisted that Dr. Webster see Kaitlyn at his next clinic in Salem, NH. She has an appointment set for the first week in March. Let's hope it actually takes place!!!
I know I need to let it go, but I'm soooooo FRUSTRATED by these events. Waiting another 6 weeks to get my questions answered just plain stinks. I feel like I'm doing a disservice to Kaitlyn. If we need to change her therapy or ESTIM protocol, then let's go. She endured the serial casting like a champ. In order to maximize the benefits the casting provided, we need to be on top of her therapy. Is waiting another 6 weeks to talk to the doctor detrimental to her???? I sure hope not.
Okay, that's my rant for the day. I try to always keep my outlook positive, and consider myself pretty skilled at finding the silver lining in most situations. However, I am human, and I am frustrated. I feel such a responsibility to ensure that Kaitlyn is getting the best care at all times that a situation like this is really upsetting to me.
* Kaitlyn had an x-ray appointment at 12:00.
* She had appointments with Dr. Webster & Dr. Braun at 12:30.
* She got her x-rays done by 12:30 - not bad.
* We then waited in the waiting room for an hour and a half, until 2:00.
* At 2:00, we got put into an exam room.
* At 2:55 (we'd now been there 3 hours and had yet to see a doctor), I heard Dr. Webster outside our room say to someone: "Is that meeting at 3:00? Yes? Then I'm going to have to fly through this next appointment". At that point, he entered Kaitlyn's room along with Dr. Braun and three other people.
* While Dr. Braun immediately started going over Kaitlyn's x-rays with me, Dr. Webster began to examine Kaitlyn. Upon seeing the marks on her legs that indicate where the ESTIM leads go, he asked me a couple of questions relating to her home ESTIM use, which I answered. He then suggested a change to the ESTIM protocol, but provided no explanation to me as to how that will work, and didn't give me a chance to ask anything. He was in the room for literally three minutes when he told me that he had to go meet with a hospital executive. I of course objected to his departure, and held up a list of questions that I had prepared to ask him. He then asked me if I could wait for him to return. I told him that I couldn't. I mean really, did he expect me to wait another 3 hours on the slim chance he might find the time to see Kaitlyn???
I was so upset! Poor Kaitlyn was taken out of school, and waited nearly 3 hours to see him. I lugged my big binder of medical records, Kaitlyn's walker, crutches, braces and casts with me only to have him completely blow us off. I had so many important questions about her care, including questions on bracing, equipment, swallowing problems, ESTIM protocol, therapy schedules, and strength training.
I have written a letter to him outlining my disappointment, and asking him for some suggestions on how to avoid this moving forward. I offered some feedback to him as to how as the mother of a child with a serious medical condition, I rely heavily on his expertise to provide guidance for her overall care and was greatly disappointed in his lack of professionalism and patient care. I have yet to mail the letter because his office staff has been nice enough to call me a couple of times to try to set up a time for me to call Dr. Webster to go over the questions. I've decided that a phone call simply isn't a replacement for a hands-on visit and insisted that Dr. Webster see Kaitlyn at his next clinic in Salem, NH. She has an appointment set for the first week in March. Let's hope it actually takes place!!!
I know I need to let it go, but I'm soooooo FRUSTRATED by these events. Waiting another 6 weeks to get my questions answered just plain stinks. I feel like I'm doing a disservice to Kaitlyn. If we need to change her therapy or ESTIM protocol, then let's go. She endured the serial casting like a champ. In order to maximize the benefits the casting provided, we need to be on top of her therapy. Is waiting another 6 weeks to talk to the doctor detrimental to her???? I sure hope not.
Okay, that's my rant for the day. I try to always keep my outlook positive, and consider myself pretty skilled at finding the silver lining in most situations. However, I am human, and I am frustrated. I feel such a responsibility to ensure that Kaitlyn is getting the best care at all times that a situation like this is really upsetting to me.
Friday, January 8, 2010
Happy New Year!!!
Wow, I've been a terrible blogger lately! I guess the business of the holidays kept me from finding the time to write an update.
The holidays were great! The kids are at such a fun age, and Christmas was really fun for all of us. Chris's parents came up from New Jersey, and we all went to Disney on Ice which was the highlight of the kids vacation! Here are a couple of pictures from the holidays...
Connor's School Christmas Party...
Kaitlyn's class gets a visit from Santa...
Kindergarten party...
Let it snow, let it snow, let it snow!!!
After several failed attempts at a "Christmas" picture for our holiday card, I chose this one I had taken back in October instead!
Kaitlyn at Disney on Ice (just FYI, the Minnie ears light up!)...
Overall, things are going quite well for Kaitlyn. She continues to walk with her feet basically flat, which is awesome. She's falling occasionally, but not nearly as much as she was prior to casting. She tends to want to go back to her old habits, such as running instead of walking, and using momentum to keep her going as opposed to walking in a slow, steady pattern. However, when we cue her to slow down, she can and does. She is still not a fan of using her forearm crutches, but we're doing our best to get her to use them more in the community (at the mall, the grocery store, etc.) instead of her walker.
She is still showing some overall muscle weakness, something that's troubled her since the SDR surgery three years ago. She's done lots of work in physical therapy to help build strength, but she still has a way to go. We finally got her home ESTIM unit and started using it this week. The theory is that electrically stimulating her muscles will force them to flex and contract, which will eventually build strength. She's using it for 10 minutes each day, and is doing quite well with it. She doesn't complain at all about the feeling of the electrical current. Apparently some kids can tolerate it, and some can't. Luckily, she is tolerating it quite well! She has even asked her therapist to turn up the current - crazy kid! She knows how the unit works, so she holds it, and watches the lights and numbers so she knows when to expect a little zap. It will take some time to see if she shows any improved strength, so we'll see. Since it really is non-invasive, and since she tolerates it so well, we're happy to give it a go and see what happens! Here are a couple of pictures of the ESTIM at work...
So, here's what happening from here...Next week we go back to Boston for a follow up with Dr. Webster (physiatrist), and Dr. Braun (orthopedist). Kaitlyn will get some x-rays on her hips, which have historically shown about 30% - 40% subluxation (slippage). We're hoping that they have either gotten better, or stayed the same. We're not hoping to hear that they've gotten worse (I really don't think they have, but we'll see...). Also, we're anxious to get an x-ray of her right leg that she broke last April. The doctor had some concern about long term damage, so we should be able to get a pretty good picture of how that's healed.
So happy 2010 to all of you! I'm thinking this is going to be a great year, and that Kaitlyn will continue to give me lots of great stories to write about!!!
The holidays were great! The kids are at such a fun age, and Christmas was really fun for all of us. Chris's parents came up from New Jersey, and we all went to Disney on Ice which was the highlight of the kids vacation! Here are a couple of pictures from the holidays...
Connor's School Christmas Party...
Kaitlyn's class gets a visit from Santa...
Kindergarten party...
Let it snow, let it snow, let it snow!!!
After several failed attempts at a "Christmas" picture for our holiday card, I chose this one I had taken back in October instead!
Kaitlyn at Disney on Ice (just FYI, the Minnie ears light up!)...
Overall, things are going quite well for Kaitlyn. She continues to walk with her feet basically flat, which is awesome. She's falling occasionally, but not nearly as much as she was prior to casting. She tends to want to go back to her old habits, such as running instead of walking, and using momentum to keep her going as opposed to walking in a slow, steady pattern. However, when we cue her to slow down, she can and does. She is still not a fan of using her forearm crutches, but we're doing our best to get her to use them more in the community (at the mall, the grocery store, etc.) instead of her walker.
She is still showing some overall muscle weakness, something that's troubled her since the SDR surgery three years ago. She's done lots of work in physical therapy to help build strength, but she still has a way to go. We finally got her home ESTIM unit and started using it this week. The theory is that electrically stimulating her muscles will force them to flex and contract, which will eventually build strength. She's using it for 10 minutes each day, and is doing quite well with it. She doesn't complain at all about the feeling of the electrical current. Apparently some kids can tolerate it, and some can't. Luckily, she is tolerating it quite well! She has even asked her therapist to turn up the current - crazy kid! She knows how the unit works, so she holds it, and watches the lights and numbers so she knows when to expect a little zap. It will take some time to see if she shows any improved strength, so we'll see. Since it really is non-invasive, and since she tolerates it so well, we're happy to give it a go and see what happens! Here are a couple of pictures of the ESTIM at work...
So, here's what happening from here...Next week we go back to Boston for a follow up with Dr. Webster (physiatrist), and Dr. Braun (orthopedist). Kaitlyn will get some x-rays on her hips, which have historically shown about 30% - 40% subluxation (slippage). We're hoping that they have either gotten better, or stayed the same. We're not hoping to hear that they've gotten worse (I really don't think they have, but we'll see...). Also, we're anxious to get an x-ray of her right leg that she broke last April. The doctor had some concern about long term damage, so we should be able to get a pretty good picture of how that's healed.
So happy 2010 to all of you! I'm thinking this is going to be a great year, and that Kaitlyn will continue to give me lots of great stories to write about!!!
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