A reminder for me!

When I found out about Ali’s pretty substantial bite issues, I was very sad and very discouraged and to be honest, I cried pretty much all the way home from the appointment (2 hours).  I had to work very hard not to cry when I was talking to Ali’s aide at school about her bite and about the fact that she may be swallowing whole, what I thought she was learning to chew.  When discussing it with her Speech Language Pathologist, I had to repeat to myself, “Don’t cry, don’t cry!” over and over again.  Sometimes it’s hard to absorb this new information without feeling totally and completely discouraged.

But now that I’ve had a few days to think about it, I realize that it’s only her bite.  It’s really unfortunate that after working for five years on feeding, it feels like we’ve taken a step back.  But, it’s only a step back and in the grand scheme of things, Ali never learning to chew wouldn’t be that big of deal.  Ali has Costello Syndrome.  I am in contact every day with parents who have children just like Ali who are struggling, not just to chew but to survive.  I communicate by private message with parents with children that are fighting cancer, I have followed blogs and communicated by email with parents as their children have lost their fights.  I watch on Facebook as babies fight to survive heart failure and the entire Costello Syndrome family rallies around them and prays for their survival.  Daily, I hear of stories of other children with Costello Syndrome undergoing biopsies, having invasive surgeries or getting very serious diagnoses.   It’s not like I haven’t been there.  I too have watched my child fight for her life.  I sat and kept watch over Ali and wondered if it was the end.  We almost lost her before she had a chance to start living.  She survived but unfortunately, the reality is that a lot of children with Costello Syndrome don’t live to be 5 like Ali.   So yes, I am sad that Ali’s bite is such an issue.  I am sad that speech is going to be more difficult for her and that in the future we may need to make some difficult decisions in regards to her bite and that’s okay.  But it could be worse.

Ali is a happy, healthy little girl and regardless of our daily struggles, she’s here.  I am so thankful that she’s healthy right now and that she’s thriving.  I may complain about the strict schedule we keep because of her hypoglycemia and I may seem really discouraged because she’s not growing.  I worry all the time that she may get sick.  I make no secret of the fact that I get frustrated with her visual motor issues and her neurological flare ups.   I might even cry in the shower because my vision of Ali eating and talking just like all the other kids was just smashed to tiny little pieces but I know in my heart that I’m one of the lucky ones.   I need to always remember that.

Have Faith.

Our family is used to experiencing many up and downs.  When you have a child in your family with special needs you get used to hearing things about them that break your heart then dusting yourself off and continuing on.  Thankfully, Ali seems to have a knack for defying the odds. She has Costello Syndrome, it doesn’t ever make sense but what we can depend on is that she typically does things that she’s not supposed to be able to do.

It started when Ali was very, very young, even before the Costello Syndrome diagnosis and continues to this day.

When Ali was 9 months old, I was crushed when I found out that she had underdeveloped optic nerves.  I was told that what you’re born with is what you keep.  Months later, Ali’s optic nerves started to change and now, they’re much healthier.  We talked about permanent blindness with her Opthalmologist and just a few years later, although still visually impaired, Ali has functional vision.

When Ali was one, I had a discussion with her Cardiologist about the significant progression of her Hypertrophic Cardiomyopathy, I believe we even talked about transplants.  The doctor was very concerned and again, I was extremely worried.  Six months later, the cardiomyopathy had stabilized and there has been no more progression.  Again Ali defied the odds.

There are so many examples of how Ali continually manages to prove that she doesn’t follow any rules.  Today, I need to remember that.

Yesterday, I was told that due to severe bite issues, it would be almost impossible for Ali to learn to bite and chew.  She has an open bite, she has no biting force because her top teeth and her bottom teeth don’t come into contact when she chews.  This bite issue will also have a significant impact on her speech.  It can’t be repaired, it’s just too complex, there are too many things going on.  So yet again, I’m told that Ali won’t do something.  We’ve just had her g-tube removed, she’s been making incredible progress in feeding and speech and suddenly after 5 years of working toward these goals, we’re told that she can’t do it.

Unfortunately, this is the life we live.  We take many steps forward and then we take steps back.  We feel the sting of the news, we dust ourselves off and we continue on.  Then, Ali does something to amaze us and she proves everyone wrong.  I think it’s really important to never underestimate the power of a determined little child with a huge heart.  We never count Ali out even when the news is very discouraging because in the past, regardless of whether it made sense or not, Ali has always managed to prove that in her own time, she’ll defy the odds.

So now, what do we do?  We continue on.  We work on chewing, biting and speech.  We stand beside her and work patiently towards our goals knowing that even though the news wasn’t good, that nothing is impossible for Ali.  We add another session of chewing and biting to our daily therapy, work just a little bit harder on speech and we have faith that once again  Ali will prove her doctors wrong. She always proves them wrong.