I frequently feel misunderstood by the experts. I think they may be lumping me into the category of overly paranoid (special needs) parent. I think they are assuming my responses match the stereotype. And I don’t know maybe they do? But, let’s just get this straight.
I am not afraid of tears.
I am not afraid of pain.
I am not afraid of death because I believe that because of Jesus there is a far better place for us.
What I am afraid of is not having hope.
Every time some expert comes barreling into the exam room telling me what N can’t do it about sends my blood pressure skyrocketing.
I’d rather they “lie” to me and he never do what they said because to live without hope is really not fully living.
I don’t honestly want them to lie. I want empathy, which is very difficult because most people have kids who eat by mouth. I want a plan moving forward. And I want to take a moment – just a moment – and recount all that he is doing.
Faith is being sure of what we hope for and evidence of things unseen.
Well, I hope N eats one day. Not as in I wish. No, I hope.
I have no evidence that he will but I have to believe it will happen.
Instead of constantly focusing on “it’s not safe for him to eat” we still need to intervene early and try.
If no one did what was dangerous in life then we wouldn’t have electricity and skyscrapers. And since some guy invented g tubes to keep these kids alive, surely we must push through the barriers and find the next strategy and invention for teaching these kids to orally eat.
So call me overly paranoid, concerned, out-of-touch, and unrealistic but really I just want to try something, anything rather than waste time and get all depressed about everything he can’t do. The boy needs a chance to try.
That’s my rant. Obviously, it’s been a hard week with therapy and doctors.
I’m realizing as I write this that no, they don’t know me or understand my son. It feels like they don’t care. Often it’s the system that gets in the way of the person and that little person just so happens to be my baby. The comfort is found not in me getting what I want for him in terms of therapy or services. The comfort is in truly knowing that God cares for N and for me and for our family more than I could imagine.
So I’ll continue to walk this tightrope of pushing for what I think he needs as his mother, while trying to let God be the one who is in control. And when he has those moments when he’s pretty coordinated I’ll offer him some flavor because every baby should be able to try even the tiniest taste of banana.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!