Finally time for an update...

Gosh - Has it really been nearly a year since my last post?  It's definitely time for an update, so here goes...

First, I want to say a great big thank you to every who has been asking me for updates!  It's heart-warming to know how many people are interested in watching Kaitlyn's progress and hearing about her struggles.  I've always written this blog with a goal of sharing Kaitlyn's story of living with CP, the ups, the downs, and everything in between.

I'm one of those people who has a weird memory.  I tend to forget the names and faces of people I went to high school with.  I can't remember what I ate for breakfast.  But I remember every number and date that made some kind of impact in my life.  May 18, 2005 was exactly 10 years ago today.  Chris and I brought Kaitlyn for a visit to the Special Infant Care Clinic at a hospital where she had been followed since her release from the NICU almost a year earlier.

We knew that she would soon be released from that program because they normally follow babies for about 1 year.  I have to say that even though I knew she was clearly missing all of the milestones most babies hit (she was unable to roll over, sit up, or crawl at a year old), I still didn't worry that we were dealing with anything more than her progress being slow due to her prematurity.  After all, the doctors told us at each previous visit "she'll catch up".

I call that first year "the honeymoon period".  We were so happy that she survived some very serious medical challenges and made it out of the NICU that we just embraced every single second with her.  So, when we were told on 5/18/2005 that Kaitlyn had a condition called Cerebral Palsy we were shocked.  We were so surprised when we heard this that we didn't even know what questions to ask.  We basically left there with a new diagnosis, a 1 page brochure on CP, and a complete lack of understanding about what this meant for Kaitlyn.

It's hard to admit that.  It's hard to say that we didn't do all of the research on all of the conditions that Kaitlyn could be facing based solely on her prematurity and her low birth weight.  It's hard to admit that we were oblivious to the fact that missing her milestones was a clear indicator that something was seriously wrong.  However, I wouldn't change that year for anything.  Having 1 year of her life believing that the worst was behind us and the best was yet to come was bliss.  I embraced every smile, every snuggle, every moment with that precious baby.

Cut to 10 years later.  Good grief - what a difference a decade makes.  Chris and I could have probably gotten degrees in neurology, physiatry, orthopedics, neurosurgery and physical therapy with the amount of time we have spent researching Kaitlyn's condition and treatment options.  We have spent hours upon hours driving to and from doctors appointments, therapy appointments, sitting in waiting rooms, asking questions, not understanding answers and asking again.  Hours, upon hours, upon hours.  We have seen doctors from North Carolina to Boston.  We have made 3 trips to St. Louis so that she could have a surgery by a world-renowned surgeon.  We have watched Kaitlyn struggle.  We have witnessed her living with pain, enduring countless procedures, going through a major surgery, and put in more time in physical therapy than you can imagine.  We have had to explain to a 3 year old why she couldn't walk.  We have had to wipe away the tears of a 5 year old who couldn't understand why this happened to her, and we've had to tell a 7 year old that she was going to have to live with this for the rest of her life.  Most recently we have been helping our now 11 year old prepare for the fact that she'll be going to middle school in a few months and there will be a huge group of new students that she doesn't know, and who don't know her.  They'll stare, they'll ask inappropriate questions, and hopefully some of them will look past it all and want to get to know her for the awesome, silly, fun, smart, and talented person she is.

So, for those of you wondering how Kaitlyn is doing, I think the best way to explain it is through pictures.  Enjoy!

She is now putting her braces on/off herself :)

She is learning to put on make up (something Chris is not happy about!)...

She has a new best friend who she loves more than words can express..

 

And most importantly she is loving life!!!

Fourth Grade... Ups, downs, drama and flip-flops

Good grief - I can't believe it's been an entire school year since I last posted.  Thank you to those who reached out to me to see how things are going.  

Unbelievably Kaitlyn is finishing up fourth grade.  In the interest of full disclosure, I should start be telling you why I haven't posted in so long.  It has always been my goal to speak honestly and keep things positive.  Kaitlyn has always been such a happy girl that doing both was easy.  However, this past year has been her most challenging yet.  It's hard to share how sad it has been to see her face the physical and emotional challenges that she has this year, but here goes...


This year the gap between Kaitlyn's abilities and those of her peers has widened and become more evident to her.  She is beyond frustrated with her body and its refusal to do what she wants it to.  The cruel reality is that her mind knows exactly how to move, but her body won't respond.  Here are some quotes from the last few months:

• "I feel like a prisoner in my own body."
• "Why did God pick me to do this to?"
• "I've already lived with this for 10 years.  Do I really have to have cerebral palsy for the rest of my life?"
• "Do you think I'll find a husband who loves me for this (pointing to her brain), and not this (waving her hands over her legs)?"
• "I wish I could do everything like other kids like run and ice skate."
• "If I didn't have cerebral palsy I would play lots of sports."
• "How am I going to take care of my kids, do laundry and drive a car when I'm grown up?"
• "I hate cerebral palsy and I want to punch it in the face."

I can't tell you how much I want to punch cerebral palsy in the face too.  

Kaitlyn has taken dance since she was in kindergarten.  She has always loved it, but a couple of months ago that all changed.  She has had the most amazing dance instructors I could ask for.  They make all kinds of modifications so that she can dance with the rest of the class, and they always cheer her on.  Unfortunately Kaitlyn is her own worst enemy.  After one particularly frustrating dance class, she told us that her brain knows exactly how to do what the teacher asks, but then she looks in the mirror and her legs are all twisted and don't move the way she wants them to.  It all came to a head when her class had the opportunity to show off their recital number to a bunch of other classes, including "the big girls" who she really looks up to.  In the middle of the number she took a bad fall, and really hurt her knees.  She tried to get up but couldn't, and had to wait for a teacher to help move her to the side.  She cried hysterically the whole way home that night.  She was terribly embarrassed and said that she doesn't want to dance anymore :(

Again this year she asked Santa "to make me a regular kid".  I can't begin to explain how difficult it is to explain why Santa, God, or anyone else can't take CP away.  

On the upside she is definitely finding some activities that she really enjoys.  She joined the chorus at school this year, and also participated in the drama club which she absolutely loved.  Of course she didn't want to use her walker or crutches on stage, so the staff worked extra hard to see that she didn't have to move around too much and that she had some props to hold onto.  It was just awesome to see her up there acting and singing her heart out.  She told me later that she thinks that people in the audience didn't know that she has cerebral palsy which made her so happy.  

The latest CP related frustration was just last week when we were out shopping for summer clothes.  Take a look around at any girl 3 and up in the summer, and you'll see that they are all wearing some type of flip-flop.  The stores are littered with blinged-out, flower and jewel embellished, brightly colored flip-flops that any little girl would love to wear.  While holding a particular pair covered in pink glitter, Kaitlyn turned to me and asked (for the 6th year running) if she could get some flip-flops.  How on earth do you tell a 10-year old that not only can't she wear the fashionable sparkly flip-flops, but that she'll need to wear her bulky Saucony wide-width sneakers with the extra velcro so that they can fit over braces?  This is not exactly the look one goes for when putting on all of the new summer sundresses in your closet.  Further, she'll probably never get to wear flip-flops, high heels, or other "fancy" shoes because she simply can't walk in them without tripping, slipping, falling and hurting herself.  Ugh.  

So, we are doing our best to continue to encourage Kaitlyn to look at the bright side and focus on all that she can do, and not what she can't do.  She has an awesome new pen-pal who deals with many of the same challenges she does.  She has some amazing friends who overlook her CP and just see her for her.  She plans on joining chorus and drama club again next year, and she has become the world's most prolific loom band bracelet maker. She has a newly donated Segway on which she now cruises through the mall, down a bike path, and through the neighborhood.  She definitely has a lot of great things going on in her life, but they still don't take away the weight of living with such a debilitating and often painful condition at 10 years old.  

Here are some pictures of Kaitlyn.  It's crazy to see how much she's grown since I started blogging about her!

Disney Trip:

Drama performance:

New haircut:

Riding her Segway with Connor:

Keeping it sunny...

It’s been way too long since I’ve posted out here.  For those of you who have asked for an update – thank you, and here it is…

I have to say that overall, Kaitlyn is doing great.  She has settled into 4^th grade nicely.  She loves her teacher and has some nice friends in her class.  She is taking jazz again this year, and continues to love to dance.  She has also joined the chorus at school, which is right up her alley.  At 9 & ½, she’s definitely becoming her own person.  She loves fashion, and spends lots of time sketching outfits in her favorite fashion design book. 

On the CP front, we continue to ride the up and down roller coaster of good days and bad days.  She had a round of injections in the spring that really gave her some much needed flexibility.  She had a good summer with fewer falls and more independent walking.  On the flip side, dealing with her condition emotionally has not gotten any better.  She continues to question why this happened to her, why there isn’t a cure for it, and how what she’s going to be like as a grown up.  Simply put – it’s a lot for a little girl to deal with.

With all that she has to worry about, I continue to be amazed at Kaitlyn’s spirit.  I think that we would understand if she became angry, withdrawn or depressed, but that’s just not how she rolls.  At least once a day I see her take a fall that is clearly painful.  I especially hate the ones where she falls backwards and whacks her head, or the countless falls in the summer on the pavement that resulted in scraped knees.  I am in complete awe at this point that Kaitlyn manages to get back up from each and every fall, brush herself off, and keep a smile on her face.  Let’s face it, getting a lump on your head or scraping your knees and elbows to the point where they are constantly bleeding hurts!  For as sweet and delicate of a little lady that she is, she is one tough cookie. 

Over the weekend I experienced one of those moments in life that you know you will never forget.  Kaitlyn’s very first dance teacher is an amazing woman named Sandi.  Sandi is one of those people who seems to have a light that follows her wherever she goes.  She exudes a positive energy that is so contagious one can’t help but smile in her presence.  When Kaitlyn was 5 years old she started dancing.  She marched into Sandi’s class with her walker and a big smile, and Sandi embraced her in every sense of the word.  She treated Kaitlyn just like every other student from day one.  She encouraged Kaitlyn to try everything, and it became clear right away that Sandi saw Kaitlyn as we do – a happy, excited little girl who desperately wanted to dance, and just happened to have cerebral palsy.  Sandi is in the process of writing what is sure to be an amazing book about the healing power of dance.  She asked me if she could interview Kaitlyn and ask her some questions about how dance has impacted her life.

As I listened to Kaitlyn tell Sandi how much she loves to dance, there was one thing she said that will stick with me forever.  Sandi was talking to Kaitlyn about how hard it must be to fall when she’s dancing, acknowledging that sometimes it must really hurt.  She noted that she was impressed that Kaitlyn always gets back up, dusts herself off and keeps on dancing.  When she asked how Kaitlyn was able to keep positive and keep going, Kaitlyn said “I always keep it sunny in my head.”  I always knew that Kaitlyn is a positive thinker, but I never heard her put it quite that way.  She went on to say that there are rainbows and fairies and happy things in her head, and that when things get tough she just thinks of happy things.

So, I now have a new mantra – “I always keep in sunny in my head”.  I mean really, how can I ever allow myself to get worked up over life’s little frustrations, when Kaitlyn is able to deal with the monumental challenges that CP heaps on her every day, but still manages to keep a sunny outlook??? 

Sometimes it’s nice to have a reminder of how much there is to be learned from a 9 year old J.

Keeping it sunny...

 

Just so much for a 3rd-grader to deal with...

Years ago when I started this blog I promised myself and all of the awesome parents of kids with CP that I would always be honest.  In keeping true to that promise, I am compelled to write about how hard things are sometimes.

I catch myself thinking of Kaitlyn all of the time while easily managing my way through what seem like the most mundane daily tasks.  I think of her when I run up a flight of stairs because I forgot to put my wedding ring on that day.  I think of her when I climb on a chair to dust a ceiling fan.  I think of her when I navigate my snow and ice covered driveway to check the mail.  I think of her when I carry a plate of cookies across the kitchen.  I think of her when I hold my friend’s baby and walk around the house with her in my arms.  I think – how on earth will she manage to do all of these things someday?

The time when I think of her the most is when I’m running.  Let’s be clear - I’m not a natural runner.  I didn’t take to it easily.  I’ve been doing it for several years now, and it’s just as challenging now as when I first began.  However, every single time that I’m on a run and I want to quit, I think of her.  She would give anything to be able to run even one mile.  How dare I ever complain that “I’m tired”, or “my legs hurt”, or “this is just too hard”.  It’s nonsense.  All of it.  The truth is that if I put my mind to it, there is no reason that I can’t physically accomplish anything I want to.  Knowing that is powerful.   On the other hand, no matter how much my incredibly determined daughter tries, there are things she’ll never be able to accomplish.  Knowing that is devastating.  To quote Sally Field’s very angry character in Steel Magnolias:  “I can jog all the way to Texas and back, but my daughter can’t!”  That resonates with me on the deepest imaginable level.  It is gut-wrenchingly painful to watch her struggle. What’s even harder is knowing that there is nothing I can do to fix it.

What’s become even more difficult than watching her struggle is hearing her talk more and more about what it’s like to live with cerebral palsy.  The older she gets, the more she is able to clearly articulate her thoughts.  Here are a few quotes from her from a conversation we had tonight…

“Why do I have to be the kid with cerebral palsy?”

“I feel like a normal kid, but I know that I’m actually a normal kid with cerebral palsy.”

“Today at school I actually fell under a table.  I cried because it really hurt, and then I was embarrassed.” 

“I wish it was another person at school who has cerebral palsy instead of me, but then I would feel really bad for him or her.”

“Things that I wish I could change but I can’t because I have cerebral palsy:

·         I wish I could dance better.

·         I wish I didn't have to go to the hospital so much.

·         I wish I didn't fall so much.

·         I wish I didn’t have to have so many procedures because they really hurt.”

“I think a lot about what I’m going to be like when I grow up.  I hope that everything won’t hurt, and I hope that I won’t fall so much, but I know I’m wrong.”

On days like this it’s hard to know what feeling is stronger – how much I love her, or how painful it is to see what she has to deal with every day of her life. 

As it turns out, I don't know everything...

There is so much to be learned from an 8 year old. Especially this 8 year old. Honestly, I'm the mom. I'm supposed to "know better". I'm supposed to teach her about life and guide her on how to make decisions. Sometimes those rule simply don't apply, and we can truly learn something from a third grader.

Back in September Kaitlyn started a new year of dance class. This year she decided to switch from Tap to Jazz, and immediately took to the new form of dance. She had asked me if she could try dance class this year without her walker. I have to say that she made a pretty compelling argument. She told me that sometimes her walker gets in her way when she dances. She mentioned that it's a pain to move it around the dance floor. She also noted that she dances around the house all the time without it, so in her opinion she is completely capable of managing without it. The fact is that she made a pretty good case for herself, and I would never want to stifle Kaitlyn's sense of independence.

However, as her mother I have to be the voice of reason. Having the will and determination to do something is one thing, having a body that will cooperate is another. As much as I appreciate her "Yes I can" attitude, I fear that sometimes she takes things on at her own peril. Just within the past couple of weeks I listened to her emphatically tell me that she didn't need my help getting up a snow-covered steep sledding hill on the side of our house. She wanted so badly to walk up like the other kids were. I let her try. I watched her slip and fall. I let her try again. I watched her fall again. After another 5 or 6 times, I walked down and picked her up, completely exhausted. She's still mad at me for that.

I couldn't in good faith let Kaitlyn just waltz into class without her walker. In my mind, I had several good reasons for this. 1. The class is 45 minutes long. I can't recall another activity where Kaitlyn has had to do anything unassisted for anywhere near that amount of time. 2. When she dances around the house and falls, at least she falls on a soft rug. The floor of the dance studio is a much harder surface. 3. In a dance class there are lots of kids who could bump her, with the slightest bump knocking her over. Having made a good case in my mind, I told Kaitlyn that due to those reasons, I wasn't comfortable quite yet allowing her to dance without her walker. I also told her that I would ask the studio owner if I could watch a class or two sometime where I would let her try some of the class without her walker, and we would take things from there. She wasn't necessarily happy with that decision, but accepted it.

Per recommendation of the studio owner, I had agreed to wait a few weeks to view a class in order to allow the teacher to get into a routine with the girls. So, after about 4 or 5 weeks, I approached the teacher to discuss watching a class. She told me that I was welcome to come, but that Kaitlyn hadn't used her walker AT ALL since the very first day of class. Um, what??? As it turns out, my sweet little daughter who always listens to her mother had been taking her walker into class, and promptly sticking it in the corner as soon as I was out the door. She had been managing the entire 45 minute class with a few falls here and there, but had always gotten right back up and continued dancing.

When I spoke to Kaitlyn about it she told me that not only was she doing just fine without her walker, but that she also wanted no part of wearing her braces and sneakers anymore. She wanted to wear jazz shoes like everyone else, and that's that. I tried to argue her safety (her braces give her a much needed boost in stability), but that was to no avail. So here we were, less than 2 months into the class, and Kaitlyn was dancing around that class with no walker, no braces, and the biggest smirky smile I've ever seen. IN YOUR FACE MOM!

What can I say - she rocks. She is honestly the most driven, determined, independent person I know. She continues to prove time and time again that she really can accomplish anything she puts her mind to. I hope that little by little I'm learning from her. No matter how worried I may be, I need to let her try things. I cannot keep her wrapped in the safety of my arms forever. So with that said, consider this my vow to allow her to go forth and continue to conquer. She may fall. No, she will fall. However she will always get back up and keep trying, and isn't that what really matters? So tackle it all Kaitlyn...  Walk. Run. Jump. Skip. Dance. Embrace all that life has to offer. 

This story ends with the following video. Today Kaitlyn got on stage at a dance performance, and danced her heart out with NO walker and NO braces. She is second from the left with a small red sequined heart on her shirt and a red ribbon and ponytail. I'll let the smile on her face do the talking...

It's all becoming too real...

I'm not even going to try to sugar coat my thoughts today. As parents there are moments that get permanently etched in our memories. Some of those moments are times when we get to experience some of our children's major milestones. Who among us doesn't remember the time our child took a first step, or said the word "Mama"? When you are the parent of a child with challenges, there are also some incredibly painful moments that stay with you forever, no matter how hard you try to forget them. Never mind having to watch all of the physical pain - I'm talking about the emotional pain which can be even worse. For me there are a few of those instances that come to mind...

1.      The first happened when Kaitlyn was 3 years old. I had just put her baby brother down for a nap. When I came down the stairs, I found her curled up on the kitchen floor hysterically crying. When I asked her what was wrong, she looked me square in the eye and said "I can't walk"...

2.      The second was when she was 4 and we were driving through town on a really pretty spring afternoon. Out of the blue she said that she wished she could walk and run.

3.      The last one was about 6 months ago when she told me that the only thing she wanted to ask Santa for was "to make me a regular kid".

Today I experienced one more of those gut-wrenching conversations with Kaitlyn. It is clear that this whole CP thing is becoming very real to her. The two of us were just chatting about a few things, when she asked me what it feels like to not have cerebral palsy. She said that she wishes she could be like everyone in the world who doesn't have cerebral palsy...like Connor. She said that it's really, really hard to fall all of the time. She has been complaining that her knees hurt quite a bit lately, and I noticed that she's got some nasty bruises. Imagine what it would feel like to fall on your knees several times a day on wood floors, tile, and pavement?

She went on to say that she knows that she's going to have this for her whole life. I asked her if that made her sad, and she said no, it makes her angry and frustrated. Who can blame her? How on earth can an 8-year old begin to be expected to wrap her head around the gravity of dealing with this forever? How as her mom can I be completely honest with her without breaking her heart?

This was just one of those days when I wish I could turn the clock back to when Kaitlyn was little. I loved those days when Kaitlyn didn't know that she was any different than anyone else in the world. Her world was truly all rainbows and fairies and it was such a happy time. I guess that's probably true though for any child, not just one with challenges. Since we can't turn back the hands of time, I think I'll continue to relish in the happy moments, and deal with the difficult ones as they come. That is in the end the job of every parent, isn't it?

Time to take a minute to enjoy the good things in life...

Okay, I'll be the first to admit that things have been tough since July for Kaitlyn.  Between her mobility challenges, this nasty acid reflux, and a week-long fight with croup, it's sometimes hard to stop and smell the roses. 

Luckily Kaitlyn is really good about enjoying all of the happy things life has to offer.  She is such a shining example of someone who always looks at the bright side of life. She loves life and can find happiness in simplest things.  Here are a few pictures of her just living life - a happy life - every single day.  Honestly, seeing her smile truly makes me smile. 

Here is Kaitlyn's awesome cake.  She baked it from scratch and decorated it herself!

 

This was "Red Carpet Day" at school. Any excuse to wear a feather boa... 

 

One of the best days ever - Kaitlyn got to play the last 5 minutes of Connor's soccer game.  She was beyond excited!  She really couldn't stop smiling, and I couldn't stop crying! 

 

Showing a little team spirit... 

 

Pirate day in class.... 

 

Thank you sweet Kaitlyn for reminding me that life is meant to be lived with laughter, happiness, and fun no matter what challenges each day might bring.