Sometimes, life is just plain tough...

I know - it's been two months since I've posted.  I remember there was a time when I was posting often with all kinds of news.  I've always had three goals for the this blog...

1.  Share Kaitlyn's story of navigating through life while managing the challenges of living with cerebral palsy.
2  Inspire others by showcasing how Kaitlyn's positive attitude and fierce determination help her to overcome many of life's challenges.
3.  Be completely honest. 

The problem I'm having lately is reconciling that currently there seem to be tons of challenges, but very few stories of overcoming anything.  If I want to remain completely honest, then I know the tone of my writing will be sad, frustrated, and maybe even a little defeated.  Like Kaitlyn, I'm someone who tends to think positively and can usually find a silver lining in even the most dire situations.  In the interest of full disclosure, I have to say that these days I'm feeling less like that person, and more like a bitter, ticked-off, really sad mom.  I look at her and my heart breaks.  I'm tired of her having to live with this condition, and I hate the fact that I can't fix it.  So those of you who like to read this blog to be lifted up, you may want to stop right here.

Things have been tough lately.  However, one huge upside is that Kaitlyn responded really well to the injections she got over the summer.  She is much looser, and she is falling much less than she was in the spring/early summer.  She'll need to have the injections repeated in early 2013, but I'm encouraged to see how well she's doing. 

As for the tough stuff, I almost don't know where to begin.  First, the doctors are talking to us an awful lot about what the next few years may have in store for Kaitlyn.  She's 8, and evidently the pre-adolescent years (9-12) can be quite difficult on kids with cerebral palsy.  If we thought that ages of 7&8 were hard on her (which they were), the next few years will most likely be even worse.  The growth that she'll experience will probably result in increased muscle tightness.  With her muscles being so tight, they will not be able to stretch with her growth rate.  That in turn may cause her bones to twist and turn because her muscles can't keep up with the bone growth.  If this happens, she will need a miserable surgery to break and reposition the bones that get twisted.

Within the last year she was diagnosed with scoliosis.  What was originally a "mild" 20% curvature of her spine has quickly progressed to a "concern".  If it continues in the direction it's going, she'll need to wear a back brace to straighten/support her spine.  So this poor kid who already uses a walker, walks differently than everyone else, falls in front of her friends all day long, is the only kid at school to wear a seat belt on the bus, sit in a special chair in class, sit in a different special chair in the cafeteria, and wear leg braces will now have the distinction of wearing a big old back brace over which fitting all of her cute clothes will be virtually impossible.  That's just the emotional component of this...never mind the pain and long-term impact this will have on her physically.

Lastly, Kaitlyn is suffering from SEVERE acid reflux.  She's had an endoscopy, and has been on 4 different medications, but nothing seems to be working.  It's impacting her whole life.  It's really hard to get through a school day with a stomach ache and acid reflux.  She missed out on amusement park rides this summer because her stomach hurt too much.  Just today she had to leave a movie half way through  because her reflux was so bad :(  It's just plain miserable to live with this.  The fact that she now has to deal with this on top of everything else just seems cruel. 

So that's it.  There's the update on Kaitlyn.  At the very least after reading this I hope you can understand why I'm having such a hard time.  I just don't understand why the sweetest, kindest, most loving person I know has been saddled with this affliction.  I guess sometimes life just isn't fair.  What's most amazing to me is that Kaitlyn manages to keep smiling, even through the toughest times.  Hopefully I can learn to smile too by watching her example...

Summertime...

"Summertime, and the livin' is easy" - George Gershwin.   

I've always loved summer.  Living in New England, there is not a day too hot and humid for me.  I know with certainty that in the blink of an eye the long, warm, easy days of summer will be behind us, and the cold fall winds will begin to blow. 

I always envisioned my children's summertime memories to be much like mine...days filled running around with their friends, swimming in the pool, running to the passing ice cream truck, and spending as much time on the beach as possible. 

For Connor, summer is turning out to be all that and more.  He is having the time of his life, running around with his buddies, going to birthday parties, perfecting his dodge ball game at camp, and working on his cannon ball.   Life is good for Connor.

For Kaitlyn, this summer has had plenty of good times, and quite a few challenges as well.  Like me, she loves the summer weather.  She is happiest outside, reading a book, swimming in the pool, or swinging on her swing set.  However, some of the things she wants to do are proving to be quite difficult for her.

This past year she went through a big growth spurt, growing over 4".  The downside to that is that her tight muscles did not have the ability to keep up with the rate at which her bones grew.  The tight muscles pulling on her bones caused several of her bones to twist.  Her mobility has been negatively impacted, and there is a chance that she'll need a difficult surgery that involves breaking her bones and rotating them back to the proper position.  A few weeks ago Kaitlyn had a series of injections into the muscles and nerves of her hips, hamstrings, quads and calves in order to decrease some of the tightness in her legs.  The goal of the injections is to loosen her muscles enough to allow her bones to grow without being twisted over this next year, and perhaps help in preventing the need for surgery.  By the way, I have no idea why she was so happy the day of her injections after not eating since the day before, getting up at 5:00 a.m., and sitting around a hospital for hours, but take a look for yourself...

While having increased flexibility is certainly helpful when it comes to growth, it is decidedly problematic for mobility.  As it turns out Kaitlyn was using her high muscle tone to help with her ambulation.  With the loss of that tone, we are seeing just how weak Kaitlyn's muscles are.  She has gone from walking independently in most situations, to struggling to get from the living room to the dinner table without falling. 

Last week we took our annual vacation to the beach.  There is a spot way down from where we sit on the beach that we like to walk to during low tide to search for crabs, snails and starfish.  Last year Kaitlyn was able to walk nearly the entire distance on her own.  This year she was only able to take a few steps before falling.  While she tried to get up and keep going time and time again, it was clear that this walk wasn't going to be possible for her this year.  Luckily she was able to hitch a ride with Dad...

That is just one example of the challenges Kaitlyn has faced since the injections.  There is no camp for her this summer.  There is no running around the yard with her friends.  There is no riding her bike with the neighborhood kids.  There is living with pain.  There is dealing with the frustration that her body won't do what she wants it to do.  There are physical therapy visits.  There are daily stretching and exercise sessions at home.  Sigh.

Chris and I are doing everything we can to make this summer fun for Kaitlyn.  She and I have a few hours alone each day while Connor is at camp.  We spend that time shopping, baking, doing art projects, or doing just about anything else she asks me to. She has been swimming just about every single day, which she loves.  Luckily being in the water is easy for her, and is also great exercise.  She has some fantastic friends with incredibly supportive moms who make sure that she still gets to hang out and have some girl time.  Having said all of that there isn't a day that goes by that I don't wish that things were easy for her.  I wish she could run and ring a friends doorbell on her own.  I wish she could hop on her bike and ride away with her brother.  I wish I could sign her up for all of the camps she wanted to go to this summer.  Honestly I just wish she could walk the two steps from her walker to the car door at the grocery store parking lot without falling and smacking her face on the concrete, but she can't. 

Why is it that even the medical interventions that are meant to help her seem to cause even more challenges for Kaitlyn???  I really can't answer that, but I can tell you this.  Kaitlyn has remained incredibly positive through all of this.  If she's frustrated with the loss of mobility, she's not showing it.  She's using her crutches and walker when she can, and asking Chris and I for help when she needs it.  She's finding happiness in all the things she loves including reading, swimming, and spending time with her friends and family.   She doesn't spend any time feeling sorry for herself.  She doesn't complain.  She doesn't dwell on the pain or the difficulty.  She is positive.  She is happy.  She is amazing.

Hopefully by the time I get around to writing the next post, Kaitlyn's mobility will have improved.  She'll be getting ready to start a new school year, and we are hopeful that by then she'll be able to walk more independently.  Until then I have no doubt that she'll keep smiling, giving me all of the motivation I need to keep smiling too. 

Here are a couple of pictures from our vacation.  I'm sure you can see by the look on her face that no matter what challenges she may be facing in a given day, there is always something to smile about...

 

  

Independence

Independence. Defined as "Freedom from the control, influence, support, aid, or the like, of others".

Well, independence certainly sounds like something we should all strive for, don't you think? As parents we all do our best to start teaching our kids to be independent at a young age, so that they don't grow up to be completely inept at developing relationships or living in the "real world" when they leave our houses someday. The goal of independence is the reason we teach our kids to use utensils to eat, dress themselves, and brush their own teeth when they're toddlers. It's something that is expected of us as parents, and something that if we didn't do would certainly lead to ridicule and scorn from the rest of the world.

While promoting independence sounds good in theory, it's not always so easy in practice. You see when you have a child with cerebral palsy, allowing independence is both necessary and incredibly difficult. I have said this a million times...Kaitlyn is fiercely independent. She has been that way literally since the day she was born. She's a fighter, she's tough, and she is incredibly driven. She wants to be as independent as any other 8 year old out there, and I want that for her. I have spoken to older kids and young adults with cerebral palsy, and every one of them has told me the same thing..."Don't treat Kaitlyn any differently than any other kid. Don't do things for her. She has to learn to do things for herself. Don't coddle her." I have heard this from both sides - kids whose parents encouraged independence, and kids whose parents did way too much for them. They all agree that allowing Kaitlyn to do things on her own to the extent that I would for any other child her age is imperative.

I have taken this to heart, and Chris and I agree that fostering independence is the best thing we can do for Kaitlyn. To squelch her independent nature would undoubtedly do more harm than good. Having said all of that, I'm finding it more and more difficult to stick to the plan. What kind of mother would stand by and watch her child fall (literally fall) sometimes a dozen times a day and not help her up? What kind of mother would be shopping in Target, allow her child to stumble, crashing first to her knees then toppling over onto her hip/shoulder/temple, and not lend a hand to help her up? What type of mother would see her child get knocked to the ground while playing soccer with her friends and not even ask if she's ok? Me. That's what mother would do all of that.

You see Chris, Kaitlyn and I all know a few important things:

1. She's going to fall. A lot.
2. She HATES when people make a big deal about it.
3. Unless she's really, truly, hurt, she wants no mention of the fall. She wants to get up ON HER OWN, and move on.

While I know that allowing her to "take her lumps" is the best thing for her, some days are just harder than others. I really could do without the glares from the people in Target who look on in disgust as I stand by and watch Kaitlyn painstakingly roll from her side to her belly, get up on all fours, move her hands from her feet to her knees, and finally walk her hands up her legs as she gets to an upright position. I've actually gotten pretty good about not letting what a complete stranger thinks bother me. What hasn't gotten one ounce easier is fighting my instinct to jump in and help her whenever I can. What all of the people watching these situations unfold don't know is that while I can fire back a steely glare right at any one of them, on the inside my heart is breaking, each and every time.

Recently Kaitlyn had her annual dance recital. This is by far the single most anticipated day of the year for her. She not only loves to dance, but her favorite place in the world to be is on stage. She works hard all year to learn her recital dance, and bounds onto the stage with all of the enthusiasm in the world. This year her tap class did a dance set to "Anchors Away". They were so cute coming onto the stage all decked out in their sailor costumes. As the dance started, I couldn't help but notice that Kaitlyn was smiling from ear to ear. I'm always amazed at her bravery. She has admitted that being the only dancer with a walker is hard, but she gets up there and it gives is her all.

About half way through the dance, Kaitlyn let go of her walker to perform a little spin. When she got back to her starting position, she reached out and grabbed one side of her walker, but missed with her other hand. She fell to the floor, and there was an immediate audible gasp from the crowd. As much as I wanted to run up and help her up, I sat still, held my breath, and hoped for the best. While another child might burst into tears, or run off the stage, Kaitlyn did just the opposite. She pulled herself back up, and managed to finish the dance with a smile on her face. My heart broke for her when it happened, but I couldn't have been more proud of how she handled it. Here's a short clip from her dance. You'll see her smiling face dancing her little heart out. You won't see her falling - that's the least important part of her performance...



On our way out of the auditorium that afternoon Kaitlyn was showered with compliments from complete strangers, kids and adults alike telling her what a great job she did. In the car on the way home Kaitlyn asked me if everyone was upset that she fell. I told her that nobody cared that she fell, but everybody cared that she got up. It's amazing to me that an 8 year old girl can can teach such an important lesson to the hundreds of people watching her that afternoon.

"The greatest accomplishment is not in never falling, but in rising again after you fall. " - Vince Lombardi

If only I could wave my magic wand and make it all go away...

Today was just one of those days. I think that every mother probably has a day like this - a day that just absolutely breaks your heart. With Kaitlyn I've had more of these days than I care to count.

I try to prepare myself for the fact that Kaitlyn is growing up, and the fact is that at 8 years old she is becoming increasingly aware that not only does she have Cerebral Palsy, but that dealing with this condition is exhausting, frustrating, painful, and annoying. However I'm still taken off guard sometimes when she blurts out her feelings about all of this seemingly out of the blue, like what happened today.

As we were in the car driving home from dance class, we were chit-chatting about the usual stuff...what's for dinner, if she has to go to Connor's soccer practice, and the fact that she is so happy that she has no homework this week. Then after a brief silence Kaitlyn told me that she knows what she's going to wish for this year from Santa. Knowing that Kaitlyn begins forming her Christmas wish list on December 26th, I wasn't at all surprised to hear this. In my mind I figured she'd ask for some Littlest Pet Shop animals, some new clothes from Justice, and an IPod Touch. Instead when I asked her what it was she was going to wish for, she answered "To be like a regular kid".

She then got all choked up, and while doing her best to hold back tears she went on to tell me that it's really hard to have Cerebral Palsy. She said she's been dealing with this for 8 years, and that's a really, really long time. She said that she's tired of falling and getting hurt, and that nobody understands how hard her life is. She's frustrated that easy things like walking are hard for her, and that's not fair. She also asked me if she was going to have to deal with this for her whole life.

Talk about heart wrenching.

I think that this has been building up over the last week. She's taken a couple of hard falls, including one where she fell on the concrete around a friend's pool while she was just trying to carry her sno cone to a seat. I can't really imagine a sadder image than Kaitlyn lying face first on the concrete surrounded by her spilled blue sno cone :(

When she told me this in the car, I did my best in the moment to acknowledge that I know how tough it is for her, and that I understand her feelings. Later when I got home from Connor's soccer practice I sat in her room with her and had a long talk about all of this, which I hope made her feel a little bit better. However, there really is nothing I can say that is truly going to make her life easier. The truth is that she is right. Having Cerebral Palsy is really hard. Falling and scraping her knees, elbows, and head all of the time is awful. Being 8 years old and unable to ride a bike, play on a soccer team, or jump in a bounce house is truly sad. Knowing that she will have to deal with this for the rest of her life is just plain unfair.

Having said all of that I truly do acknowledge that I need to have some perspective. I know that there are millions of children facing much more dire and challenging situations than Kaitlyn. I count my blessing all the time that Kaitlyn is doing as well as she is. Many children born as early as she was face much more difficult roads through life than she does. However explaining that to a sweet little 8 year old is incredibly hard.

Since I'm pretty sure that Santa isn't going to grant Kaitlyn's Christmas wish, I really do wish I had a magic wand to wave to make this all go away for her...

Some things just pull at my heartstrings...

It's funny how these things tend to come in waves. I ought to know better than to let myself breathe too easily when things are going well. March was really an amazing month. Between our trip to Disney World and Kaitlyn's birthday, life around here was really happy.

Whereas March was all about rainbows and fairies, April is turning out to be more about frustration and annoyance.

Most recently Kaitlyn's been asking me if she can play soccer on a team like Connor does. Chris and I have always said that we would give Kaitlyn every opportunity that any other child would be given, no matter what. However, now that I'm faced with figuring this one out, I'm admittedly rethinking our strategy. For Kaitlyn to play soccer, there are some major hurdles to overcome. The biggest decision would be whether or not she would use her walker. When she plays soccer here in the yard, she doesn't use her walker. Luckily her neighborhood friends are AMAZING. They all watch out for Kaitlyn and take precautions not to bump into her. I even overheard a 3rd grade boy say to his teammate "Don't steal the ball from Kaitlyn.". I've never asked these kids to give her any special treatment, but the fact that they have done it on their own just warms my heart. However, on a soccer field with "real" players, I would anticipate that Kaitlyn would get bumped and knocked on her butt all day long. With that in mind, I can't imagine her playing without her walker.

So, the only real option would be to use her walker (which she would most likely hate). However, I'm not even sure if the league would allow it. I recently read about a family who had to file a lawsuit against the town they live in to allow their 9-year old son Ryan to play soccer with his walker. The league said that it was a danger to the boy and to other players on the field who could get hurt if they bumped into the sharp metal corners. A federal judge ruled that Ryan should be able to play soccer. He ruled that the walker must be padded, and that the league had to provide an adult to stay near Ryan on the field. I can't help but wonder if this is something we are ready to face. Truth be told, I have no idea if Kaitlyn would be allowed to play here in our town. Even if she's allowed, I'm not sure that I feel that it would be safe for her. I'm really not sure where to go with this whole thing...

On another note, Kaitlyn has been telling me that she's been spending most of her time at recess playing by herself, mostly on the swings. Knowing what a social girl she is, I'm always surprised to hear that she's spending a significant amount of time by herself. When I pressed her about it, she told me that she would prefer to play with her friends, but that they run around and play games that she can't keep up with. As a matter of fact she said that they line up to go outside, and as soon as they get the chance the kids all run off in different directions, and she gets "left in the dust". With everyone gone, she makes her way to the swings and hangs out alone. How sad is that???

Chris and I tried to give her some tips to help her through this. We suggested that she make some plans ahead of time at the lunch table with some of her friends. Sure enough Kaitlyn has become quite skilled at planning activities for her and some friends. She is so excited to come home and tell us that she got to spend time playing with her friends instead of hanging out by herself. We've seemingly dodged this bullet for the time being, but situations like this truly pull at my heartstrings a little. I wonder how long this had been going on without me knowing about it?

It's amazing to me how some of the things people take for granted are so difficult for Kaitlyn. When most children ask their parents to sign them up for a sport, it's usually as simple of filling out a registration form and paying the fee. Five minutes later, your done. As a matter of fact our biggest dilemma with Connor this season was trying to figure out which 2 of the 3 sports he wanted to play we would allow him to play. Similarly, for most children simply running around with their friends is something that happens naturally, without any forethought whatsoever. For Kaitlyn these are just two examples of seemingly mundane activities that for her present monumental challenges.

The one upside to all of this is that I know that this too shall pass. These challenges are certainly going to continue to arise year after year. My goal is to meet each one head on, and together with Chris figure out a solution to each situation one step at a time. Okay, that's probably more easily said than done, but it sounds good, right???

Happy 8th Birthday Sweet Kaitlyn!

I love, love, love Kaitlyn's birthday! The reason that I love it so much is because she loves it so much! On her big day she woke up with an extra bounce in her step and announced that she felt bigger. She spent the whole day with a giant smile on her face, and truly enjoyed every bit of celebration that we jammed into the day.

She asked that in lieu of a party that she and I go to the mall for a shopping spree. She loves to shop, so this was the perfect way to celebrate her birthday. She picked out the perfect shopping outfit, and off we went. She hit all of her favorite stores, including Claire's, Justice and Build-A-Bear. She took her time in each store picking out all kinds of fun stuffed animals, earrings, and clothes. Once she was all shopped out, we headed home to enjoy some birthday cake with the neighbors, then headed out to a dinner where she had a big bowl of her favorite meal - spaghetti and meatballs. Check out the picture of her cake below. My super-talented friend Kim made it for her. Most days around here you'll find Kaitlyn listening to her IPod and dancing around the living room. So what better cake to make than a pink IPod cake? Kaitlyn LOVED it!

It was just a great day all around. It's nice to take a day off from all of the challenges in Kaitlyn's life, and just celebrate her awesomeness. She is just the sweetest, happiest little girl, and I really am so lucky that she is my daughter. On her birthday each year I can't help but reflect on the day she was born. This year instead of thinking too much about her rough start, I chose to be grateful for just how far she has come. Although she has challenges to overcome each day, she does so with her signature positive outlook and unbridled enthusiasm. It is such a treat to watch her grow up.

Here are some pictures from her big day. Hopefully you'll get to see what a truly happy birthday she had!

Dance Center Newsletter

If you've read this blog, you know how much we LOVE Kaitlyn's dance studio! When they asked us to be the "feature family" in their March newsletter, we were thrilled to share our experience. Check out the story at the link here...

http://www.mhdancecenter.com/dance-studio/londonderry-dance-koza/