Friday, March 20, 2020

Random Reflections on having a child with special needs

This is a tough one.  I don’t go into details about it very often or with very many people.  It taps into a lot of emotions that most people don’t understand.  Or they try and it gets awkward.  Or they have a child with a different set of needs and it’s not quite the same for either of you.  And it’s easier to smile and say “she’s such a joy!”.  But after writing about birthdays, I felt this needed its own post.  I get the most attention for having high order multiples, but Leah’s needs make it a whole other ballgame and those needs alone equal that of the other 5 put together.  I wrote a post a few years ago about being outnumbered, so I won’t get repetitive... just know not much has changed in that regard since they were two.

Leah has so many needs because of her siblings squishing her in the womb.  Her brain didn’t fully develop which led to very significant delays in all motor skills, vision, language, and eating/digestion.  Beyond her basic needs and simple therapy exercises, her needs are often put to the side because of her siblings collective needs.  Yet having so many siblings is a huge blessing.  If I only had Leah, I think I’d be much lonelier.  I wouldn’t bother to take her on outings or swimming or anywhere I wasn’t sure she’d have a positive reaction.  Therefore, not meeting anyone and only seeing therapists and teachers as adult interaction- and Leah wouldn’t get exposure to much either.  If I only had Leah, I also might be obsessive with her care and activities.  There’s just SO much that we could be working on with her, that it’d be easy to fall into a serious schedule trap.  Instead we do the best we can.  That often means admitting to doctors and therapists that I didn’t do any of the “homework” I was last assigned.  But ya know- she’s loved and she’s happy and that’s what I focus on.  And when all her siblings start singing together to calm her down and cheer her up, or ask to push her on a walk and check to make sure her feet and hands and head are in the right place, or cheer her on during a therapy session- I see their bond and how special it is to have so many siblings the same age.  

And Leah IS a joy.  Everyone tells me so and I believe them because I see it.  She’s joyful.  When she’s happy, she lights up the room and it’s contagious.  When we come back to school every August, it takes us two hours to make it through the classrooms because Leah’s fan club has missed her over the summer and wants to love on her.  They don’t do that for just every kid.

She’s also made me appreciate the little things.  I mean the tiniest most minuscule of things.  Because when your child meets no developmental milestones- I mean NONE. Ever.- you get excited over the tiniest things they accomplish.  Hold their own head up for 7 seconds when it used to be 3 seconds?!  WOO HOO!!!! I mean we’re seriously excited over these things.  The tiny things add up to new accomplishments before you even realize it.  Thankfully, her therapists take notes and when I don’t feel like any progress is being made, looking back a few months always proves otherwise.

But with the joy and love and celebrations, there is also a recurring grief and fear and anger and sadness.  I have learned it’s never easy to hear there’s something “wrong” with your child.  Whether there’s a shock involved of an unknown issue or your mama’s heart feels something is off- it’s never easy to hear a professional say the words out loud.  Makes it real.  No more inkling of hope it might not be true.  It’s even harder to be told there’s nothing you can do.  She’ll never be able to do anything.  Try what you like, but it won’t matter.  Especially when she’s 2 months old and weighs all of 3 lbs.  So I grieved the image of the girl I thought I’d have and the things she’ll never do and experiences she’ll never have.  Every now and then that grief comes back up, usually while completing developmental questionnaires.  It’s not fun to check no to every question- no need to actually read the questions.  And there’s fear of the future.  What happens when I can’t lift her anymore and she’s as big as me? What happens after she ages out of the school system? Will her siblings care for her when we no longer can?...If she even lives that long?  Things parents of special needs kids think about at night.  I try to keep myself out of that rabbit hole because I’m not there yet and worrying about things that are so far ahead does no good.  But it’s there.  The anger and frustration of the whys and hows and dealings with doctors and insurance companies appears periodically.  And I often feel sad for the parents who put complete trust in what those professionals tell them.  That a child will never do anything no matter what you try.  Ugh.  It’s just not true.  It might take a lot of time and a lot of work and a change in perspective- but progress is progress and everyone can do something.  Even if it’s just spreading joy with a smile.

But what I always come back to, what grounds me, is faith.  That God made her just as she is for a purpose.  That God gave her to us for a reason.  Do I know what that is? Nope. Do I have doubts? Yep. Is that ok? Of course it is.  And I can look back and see how God was preparing me for this mom job years before I ever saw it coming.  It’s absolutely not a perfect pretty picture, but I’ll take it and keep on doing the best I can.