I am a fighter.
I didn’t fully realize this until N was born. I think in the past my people pleasing tendencies won out. Because I do really want people to like me. Because I prefer peace over conflict. Because it really takes a lot of energy to fight for what is right and good and true.
A fellow special needs mom told me to be prepared to fight. Then she said, “And it will be a fight.”
Only six months in and I couldn’t agree more.
Right now our battle is for more therapy services for N. We’ve been fine this year with our insurance deductible met and needing less than half a year worth of therapy. However, our insurance maxes out the number of therapy visits we’re allowed quickly. Next year is a whole other story. There are lots of programs for kids with special needs but there are also lots of exclusions and long wait lists. So far we haven’t qualified for anything.
Praying people we need your prayers. We are reapplying for a waiver program. Please pray that N is accepted. This is our second application. I put lots more ammunition in the application this time. I’ve heard it can take three tries sometimes. It’s easy to feel beat down by failed attempts. I feel that way jumping through paperwork hoops and waiting on hold during nap times. However, paperwork and organization are my strength. And I really feel if I don’t try hard enough then I’ve done N a disservice. This kiddo really is a good candidate. I know other kids with his same syndrome who have qualified for this program without a G tube, without needing to be cathed, without a suction machine. How much more does he need to have to prove that he is indeed medically fragile? The qualifications have changed in the last couple years, and like lots of programs, the money is running now. But like I said, he’s a good candidate and he needs additional therapy.
So this is our current struggle and I know there will be more ahead.
Finding the right therapists and doctors for N.
Finding resources to cover all these services.
Finding respite and rest for the rest of our family.
Finding ways for M to be able to continue doing the boyish things he loves.
Finding ways for our family to do normal, everyday things we enjoy together.
Finding time for my husband and I to have together to just be us.
The key is knowing when to really push for what N needs and deserves and when to throw up the white flag. Not throw up the flag completely, because I don’t believe that’s right and just, but when to look for another way. We are not there yet. I am trusting I will know when and if we are, and that God will provide. Because that’s what He does, provides.
And I will fight because that’s what mama bears do.
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!