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.