a what-it's-like rant

My cousin recently asked her facebook friends who have special needs children to write her explaining what has helped/what has been difficult.  She is an author, and is writing an article on it.  This was my reply.


Ok so off the top of my head, here is what has encouraged me/annoyed the piss out of me - 

when Bailey was a baby, a friend of my MIL's sent a newspaper clipping to her about embyonic genetic selection...basically inferring that if we were to have another child, we could sort through the embyros before implantation to find out if the kid has CF, and only implant the "good" ones. I was HIGHLY offended, as what if we had done that with Bailey?! Her not be here?! Impossible. And what about those embyros?!  Not for me.

In addition, in having another child, I felt I almost had to explain that it was an unplanned pregnancy, as I felt crucified if I would have willingly had another, subjecting that baby to a possible disease knowingly. "Did you know about the CF before you had Bailey? Did you know you were carriers? Would you have had children?" Really offensive and over the line I think. I would guess many parents of special needs kids feel that their reproductive rights are no longer their own, with privacy as a luxury. It's like if you have a child with an inherited disease, suddenly it's more acceptable for your reproductive plans to pass the approval of others, like it's any of their business. 



For Taylor, she gets looks a lot. Looks of compassion sometimes - but even that can offend me depending on my mood. Like she's something to be sorry about. Looks that say "control your kid" makes me want to get in their face - and yet I'm so busy trying to regulate Taylor and desensitize her to whatever's putting her over the edge, that I couldn't address it. If I could, I'd say, "Are you perfect? Is everyone in your life perfect? Because I think we're all works in progress. What gives you the right to turn your nose down at my precious daughter, who's just trying to survive being in a loud store with a hundred different stimulations that are attacking her sensory system. You try being her for a minute - because she's my hero. She puts up with more on a given day than you would in a month. And still has joy, still has humor, has learned to show love and care to others. Or try being me, a mom who just loves her kid and is trying to do the best she can, to live through it and not just survive, but enjoy the ride. A mom who tries to be two steps of her kid at any given time, but still fails. Often. And when I give you a look like you just gave me, then you can tell me to fuck off. But until then, why don't you try kindness over judgement."

Well that's what has upset me.

As far as encouragement, any time someone praises my children, I glow inside. I soak it up. I am proud, if someone is proud of my child. Any help is appreciated. If we're at a restaurant and Tate is unraveling, an offer to take her for a walk or to the bathroom lets me take a breath. But it's complicated - if the offer is clothed in a "let me help you bc you obviously can't do it" look, I push away the help, I'll take care of her myself. But if it's given in a "let me spend time with the lovely Tatie Tot, come on sweetheart!!" kind of way, I SO appreciate and accept. Does that make sense?

I could talk about this for hours, but your eyes are probably crossed and I have to pee anyway. 

So that was my response.  Any of you with a child with special needs, thoughts?

Perspective

I've been thinking a lot lately about perspective.  A week or so ago (all my days run together...) I went with 3 MOPS friends to visit a pediatric care facility that houses 119 severely disabled children.  I think the term 'disabled' is now a faux pas, but you need to understand these children have extreme physical needs.  A few times I had to pray to God to stop my tears from coming out of my eyes...He did.  I had to put my mind in a different place once or twice, because to be actually emotionally present would have led to completely breaking down.  Now, because of Bailey's quarterly CHOP visits, I have seen many children incapacitated and what usually brings me to tears is not their lot, but the way my child reacts to it.  With empathy, and deep love.  Prayers, and giving her deserved stickers and erasers to them, even though they can't see or know she is giving.  But this time, my emotions were for the children...all that they would never be able to do, and their parents.  I'm still thinking about the parents.

My children can run, skip, swim, dive, jump.... their children will never set their toes to the floor.

My children can read, write, sing, communicate, say 'I Love You'....their children mostly can not.

My children can eat and drink...their children will never know the taste of a cherished family recipe.

My children see, hear, feel, understand....these parents are left to wonder what their child thinks of their world.

My children have social relationships, and will have boyfriends....these parents will never sit in a pew on their child's wedding day.

My children's bodies are healthy and able to have babies someday....their children will not be able to make them grandparents.

From morning to evening, there a million things my girls will do that these kids will never be able to.  Of course I knew this before, but it was not a presence in my mind, certainly not daily.  It would come to mind when I saw a particular child with needs....the whole "Lord, care for him/her.  But thank you it is not my child."  True, right?

Both Bailey and Taylor have a need that yes, I wish they didn't.  Bailey's future is unknown (except by her Maker!!!) with her CF, and I admit that I feel much fear sometimes.  I try not to, because I know God doesn't want me to and I pray it's all for naught, perhaps there will be a cure or perhaps her mutation is mild enough it doesn't ever manifest itself into serious lung disease and, God forbid, premature death.  I pray.  Taylor's sensory needs are manageable, and getting easier for her and Kevin and I to navigate every day.  Both of our girls are just so healthy, I just have been FILLED with a spirit of gratitude that has not left me, since my visit to this center.  I catch myself appreciating things in a deeper, more emotional way, than I had before.  The way their hands clasp together when we pray.  The fact that they can pray.  The way they shimmy their bums after a shower in their towels.  Running ahead of me in the store.  Sitting cross legged together playing with their polly pockets, using their fingers to grasp the tiny pieces.  I've been marveling at the complex way - yet easily overlooked, seemingly, effortlessly simple - their bodies work.

And still...and STILL...I have been also forgetting.  Catching myself exasperated when they're running ahead of me in the store.  Playing polly pockets before school....hurry up the bus is going to come!!  Stop dancing around, it's past your bedtime, dry off already!

To be sure, I try to be patient with my kids.  It is in my mind daily, that this little-girl time of their life is precious.  Speeding by.  If you have read my blog at all, you know this is a struggle for me!!!  I enjoy where we are now, but I mourn for days that were, even though I have already knowingly romanticized them in my mind!!!  I try to enjoy them, knowing their childlike hearts are sacred.  Knowing that they won't always want to crawl on my lap....when they do now, their long, gangly legs curl around mine, toes touching the floor.  I know they won't always want me to sing them bedtime lullies, so I try to be patient when they ask for one more.  But I get tired, I get shortsighted...I am a MOM.  Pulled in many different directions at any given time.  Feeling underappreciated, feeling spent.

But I am praying to keep my perspective, I want to keep my sight on how blessed my life is with my family.  Sure my children will need disciplined - often - and it would be a rare person that doesn't lose her cool when she happens upon a child who mistook a permanent marker for a regular one and didn't have a placemat underneath...on the carpet.   But that really doesn't matter.  My children need to learn of course, but I need to remember what really matters, what's important.

I need to keep perspective.