Toughing it out

This past summer our oldest son celebrated his 6th birthday, sadly (and I suppose only fitting for a middle child) life got in the way and we never celebrated his big day with a party.  Fast forward to biggest sisters 8th birthday that just occurred, and I couldn't in good conscious (or without never hearing the end of it) throw her a birthday party without having had one for him.  So yesterday we took the morning to celebrate our daughter and the afternoon to celebrate our son.  Two parties, two different locations, two different parts of Phoenix, two different groups of children, but one fun filled (exhausting) day.

With the day scheduled to focus on our older two children it made perfect sense that Sonzee would decide to have one of her atrocious seizure nights the night before.  Really it included the day before as well, so let's just say the 24 hours preceding the parties (as well as the parties themselves).  I already have so much guilt as it is with my four other children, I was not adding "missing 2 birthday parties" to the list, so Sam and I watched her closely and explained to her that today was not her day.  One thing about Sonzee is how determined she is when she wants to be, so despite the fact that she surely would have preferred to spend the day in bed she managed to do what she does best (second to seizing) and tough it out. 

Her day did finish with a warm bath and some rescue meds but she managed to experience some incredible experiences with her siblings, complete with her big sister pushing her around the ice rink, and having cupcake frosting twice in one day.  I really cannot stand how much the effects of CDKL5 attempt to throw wrenches in everything we do.  I know Sonzee would have been so disappointed to not share in the festivities of her siblings today so I am glad Sam and I were able to remain calm and trust our seizure management enough to not have to split parenting duty between parties and the ER and that she was able to stick it out. 

CDKL5....you are going to have to try harder because Sonzee is quite a resilient little bear.

Mommy bloggers, Join me @ Top Mommy Blogs

Resilience

"All this stuff...other people's opinions.  It's nothing, you know what's not nothing?  When a Dr tells you there is something wrong with your kid.  All the things he is never gonna do, and it's a nice long list....so now when something happens, it's like "what else you got?  Bring it on.  I get it.  Normal seems good, but guess what?  We're not normal.  We're better, we're...bulletproof."  -Jimmy DiMeo (Speechless TV Show)


I feel like once you enter into the unknown and you begin your special needs journey it feels like one constant uphill battle.  There might be small spots to sit and catch your breath, but as a special needs parent there really is nothing that comes easy.  It wasn't until last week at the weekly parent support group I attend that it became clear that if you asked me one word to describe a special needs family it would be "resilient".

The new television show "speechless" to me is a blend of Parenthood meeting Modern Family with a special needs child component.  The writers are witty,  full of heart and from what I have read, one of them is a father who has a child with "Pitt-Hopkins".  Another rare disease that has no known cure, with similar symptoms of CDKL5, and one I was just introduced to a couple of weeks ago when Sonzee made a new friend.  

I have watched the clip including the quote on the top of this post 30 times at a minimum.  My eyes filled with tears and yet my heart full of happiness simultaneously.  I guess a summary of my experience this far.  I think the notion that special needs families are bulletproof holds some truth, but at the same time I am torn because I think there are times that the bullets penetrate and even after recovery things will never be the same.  The fact is, the bullets just keep flying. 

There is something to be said about the resilience of special needs families.  That's not to say that if your family isn't in this world that you are exempt from struggles or trials.  It is just a special needs parent develops a hard shell like a turtle yet with the elasticity of a rubber band.  Many things are thrown at us, some make a dent, but a lot of it we just send flying right back.  We are a special blend of warrior and human combined...and our lives are far from normal.  Sometimes it would be easier to go back to the way things were prior to having a special child, but then I wouldn't  have the understanding of resilience that I do now. 

Mommy bloggers, Join me @ Top Mommy Blogs