The Work of Special Needs Parents

I don’t often talk about the struggles  of being a parent to a special needs child/ren.  I feel guilty because my children are for the most part healthy. They don’t need fancy medical equipment, but they have very real disorders that need a lot of my time.  Apraxia of speech, oral sensory issues related to apraxia, fine/gross motor difficulties,  a phonological speech disorder, congenital trigger thumb, and possible hip dysplasia in my infant.  It takes its toll.  So here’s a brief glimpse into the mind of a special needs mama.

I feel myself buckling a lot lately, thinking I can’t, but then somehow I always do.

I am lucky. For the most part, my kids are healthy. But I am so, so very tired of specialists and therapies. No, my kids do not have any life threatening conditions. You really wouldn’t know that HOURS of our weeks are spent running speech drills, working on coordination, me researching how to best help them. Am I thankful that our life has not been a revolving door of doctors? Yes. But I’m still tired.

There are still days when I angrily ask God, why??? Why can’t we have ‘normal’. We don’t want to be special today we want to be plain ol’ normal, no speech, no upcoming surgery, no doctors calling to ask if we’ve taken our child for this screening or that screening yet.

SpecialNeedsParentingPlease don’t ask me how I do it. The answer is raw and dirty. I cry. Behind closed bathroom doors. In my van in the front seat before I dry my eyes so they can’t see. In bed silently while everyone else is asleep.  I tell myself to suck it the hell up because there was a time when there were no babies. When my womb was empty or healing yet again from another loss.  I get so mad at God all over again because shouldn’t I get to  have it easy after it was SO HARD to become a parent to begin with.

In brief moments, He answers. He gently laughs and reminds me, this is it. This is what I was preparing you for. You worked for it. And now you work FOR THEM. Cry, let it out, then remember the strength you built through all the waiting and the loss. You get to be the mother of special children, and one day, no one will know the struggle until you tell them.

You’ll use it to encourage others who are crying behind  bathroom doors and in front seats of vans. You’ll use it to tell the mom whose child is struggling that one day this will only  be a memory. And I move on. And do it. Just do it, do the work to help the child that you prayed for.

Because the child is here, alive, and well.

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Sewing Inspiration: Teacher Gifts

While I’d love to tell you guys that I’ve been busy sewing and have tons of new projects lined up for the blog, I sat down at my sewing machine for the first time in several weeks today.  Instead of sewing or writing, I’ve soaked up this final pregnancy and have been basking in all the glory that is non-stop morning sickness for three months.  Baby Boo is sixteen weeks old (gestational age) today and the morning sickness is improving ever so slowly.  Which means that hopefully sewing will be back in full swing soon with new projects for you!

Today’s sewing adventure was a gift for my son’s speech pathologist.  I haven’t talked about my son’s speech apraxia on the blog before, but he started speech therapy at the beginning of this year and we’ve seen him blossom and improve his speech SO much.  He’ll get a new pathologist when he starts school in the fall, but we wanted to show our appreciation for all that our current pathologist has done for him.

My son loves superheroes and his teacher has been kind enough to include them in his therapy.  He can say almost all their names clearly now which is huge!  I of course included him in the gift for his pathologist and he went the superhero route!  He picked out the super cool Avenger’s cup and we used my sewing machine to make a cozy (complete with superhero cape!) for the cup.

I hope you enjoy our fun little project, what gifts have you given your children’s teachers?