Friday, October 26, 2012

Life Without the X

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I often wonder what life would be like without Fragile X.  How much easier would it be to not have to prepare so much for changes in routine or even simple things like a trip to the zoo.  I spend much of my days planning and keeping a schedule going to keep Ayden comfortable.  We learned early on that we can only push him so far before he breaks.  It's a difficult balance to keep, pushing versus comfort.  After 5 years, I usually walk that fine line pretty well, but every once in a while...well, it's not pretty when that happens.  It'd be such a relief to not have to constantly worry about it.

This is on my mind today because we have a lot of things happening right now.  On Monday, we will be taking a long drive to Chicago for our first appointment for the STX 209 trial.  It is a 4 hour drive there and back, plus the appointment itself and we're doing it with all three kids in tow.  I know it's going to be hard on Ayden (and the others) and have been dreading it.  I've been restraining myself from preparing Ayden for it because we want an accurate picture of his anxiety for the trial. I think the preparation helps my anxiety as much as his sometimes.  It's going to be rough, but we will get through it, for Ayden.  All this considered, Mr Awesome had his best friend's dad pass away unexpectedly last weekend.  The memorial service is 2.5 hours away in his hometown (where the kid's grandparents live) on Saturday.  In any typical house, this trip followed by a Monday trip to and from Chicago wouldn't be a huge deal - but it is with us.  And it sucks.  On top of all that, we also had all three kids and Mr Awesome sick this week.  Then a vomiting episode last night.  It is just so much, and it seems so unfair that things like this can affect Ayden so much.

My mind has a tendency to head down the worst road at times like this, heading to a place where I feel sorry for myself.  It's then that I take a step back and remind myself of all the things I wouldn't have if Fragile X weren't a part of our lives.  I have a five year old that still loves to cuddle me.  One that lights up any room with his smile and happy nature.  His unconditional love and happiness is amazing.  I have an ever-growing family of support and love that I never would have come in contact with had it not been for Fragile X.  A group of people that understand exactly what I mean when I say "Ayden had a meltdown in the store".  I have an understanding and compassion for children and people with special needs that I don't think I would have ever had without Fragile X in our lives.   I have a strength that I didn't know existed within me to advocate, fight, and stand up not only for my son but for anyone that can't do it for themselves.  You see, we have it a little harder than most people sometimes and I would never wish that on anyone else.  But through it all I am a better person, a person that I can be proud to be.  And I have Fragile X to thank for that.


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