It took me a while to consider my son as special needs; maybe I was hoping all of the reasons he was labeled as such would just go away if I pretended hard enough?
It’s interesting, living the military lifestyle while parenting a baby with enough special needs that requires us to be careful where we move. We need a pediatric cardiologist, nephrologist and pulmonologist in town, among other specialties. We need to be within driving distance of a hand surgeon. I’d prefer a really good one, but we have to make do with someone who practices close to a military base, whether they come highly recommended or not.
Instead of seeing the world, we have to make sure we can see a children’s hospital within a day’s drive.
Instead of relying on our family for help when the situation becomes too much, we have to open our hearts and put our trust in strangers we hope can morph into the family we need.
We have to retell and retell and retell our child’s extensive medical background to new providers, new nurses and new specialists each time, and put our child through a dozen new patient appointments just because of the military.
And, yet ... I couldn’t be more grateful for the support the military has provided our family as we adjust to our new normal.
After exactly 90 emotionally trying days in the children’s hospital which included several procedures, tests, labs and surgeries, including open-heart surgery, on my tiny 3-month-old, my son’s bill came to only a few thousand shy of $1 million.
Yet, for my literal million dollar baby, I only paid $326.
Of all the things I was worried about over those weeks that seemed to stretch on forever, and all the uncertainty and fears that come with having a medically fragile newborn -- a newborn that doctors enjoyed calling a “mystery” -- the thought of not being able to pay didn’t even cross my mind. Military healthcare is, without a doubt, one of the best things about parenting a special needs baby while living the military life.
All of his home healthcare needs -- his feeding pump, his feeding tube supplies, his formula, his albuterol and breathing machine -- all 100 percent taken care of by Tricare, including 10 hours of respite nursing care a week. We don’t use it, but it’s nice to know it’s there if I find myself in need.
When we finally brought our baby home, he had nine referrals for specialist follow-ups and dozens of doctor appointments scheduled months in advance, all covered. He received speech and physical therapy twice a week, and we never paid a dime.
The referrals were always ready and waiting at the doctor’s office for us; we never needed to hunt down his PCM and beg for her to send it to Tricare. I had prepared myself for a paperwork nightmare, and instead, it was all incredibly organized and smooth.
Do I wish we lived closer to family so I could cry to my mom in person on those really bad days where I feel like I’m failing him? Absolutely. I’d give up almost anything to be near her and pull from her strength; almost anything, because I can’t give up this healthcare. Yes, we worry about him, his progress, his health and what his future looks like, but… we never worry if we will be able to get him the care and therapy he needs.
Living the military lifestyle with a special needs baby makes an already difficult situation a little more complicated, but it also clarifies some larger issues we never have to worry about. The trade-off is worth it, in my opinion.