amazing (invisible) grace

Some time in September (it’s February now) Thaniel got sick. Just a cold, a virus, his doctor said, and Thaney would be fine.  I brought him back over and over again in those first few months to bang on his doctor’s office door again and again to say “he still isn’t better… shouldn’t he be getting better?”  but I was assured this was the way, that this winter was a bad one and Thaniel would be ‘just fine‘. Since then Thaniel has been hospitalized thrice, with the flu, pneumonia, the dreaded R.S.V,  been on oxygen, had surgeries, and once we nearly lost him.  Thaniel needs procedures done every three hours to keep his bowels cleaned out , is on enough meds to embarrass a pharmacist and every sniffle or sneeze causes me to hold my breath and look at him cross-eyed.

I’m finding grace a difficult emotion to grab hold of.

I have this deep in my belly feeling that when I question his doctor now on just why Thaniel has suffered as he has in the past months with ‘just a virus’  that his doctor is circling his wagons. That I am being fed a party line, that someone is passing the buck and Thaniel’s weak immune system (a product I was told, of his Down syndrome) is whats left holding the bag. “Look on the bright side” the doctor chirps, “next year he’ll be SO much stronger because of all of this”

Did I mention we nearly lost him THIS year?

I do understand that Thaney has a weak immune system. I understand immune systems pretty well actually. I myself am Neutropenic (my body kills the white cells it makes before they can mature) and so I can often be fodder for whatever cold or cough is flying around, and what is “just a virus” for some becomes a full-blown knock down drag out brawl for me. Pneumonia is common for me, so is strep. I’ve lost organs to inflammation and infection. I know from immune systems. And while my son has been battling to stay upright, I’ve had to fight alongside him. So that I don’t get sick. Because he needs me. To give him those meds and procedures, to keep finding foods he’ll eat so he gains back the weight he’s lost, to go to work so I can earn him a living, to have a clear head while doctors give instructions.  Fighting means taking shots that force my bone marrow to produce white cells quickly and in greater quantities. It hurts. My bones ache.

Did I mention I’m finding grace hard?

But here’s the thing. Right when I want to complain, and rant and let the whole world know how bad I really have it (kinda like I just did) Someone in my ‘ special needs moms’ group will post that her baby has gained their angel wings, another will give us the funeral information for her 22-year-old son, another will send an email that they never even made it home from the hospital. And all of a sudden I am acutely. I’ll say again, acutely aware of the invisible grace surrounding myself and my son. I can almost feel the tangible arms of grace holding that kind of grief at bay, even now, even as I type this. Grace is flowing, not from me, but for me, and for Thaniel. Amazing.

I once heard a quote.. ” sometimes the desire to pray, is in and of itself a prayer, and God can ask no more of us”.. or something like that. And I relate, if not agree. I pray lots, and lots, and not just for myself and my needs, but others too.. but I think the spirit of this quote resounds with me for this reason. Sometimes my prayers are just post it notes, and the real cry, the REAL need is somewhere buried in the paper work and I can’t articulate to utter it. I’m praying, but I’m just putting out decoys in the water in hopes that the real ducks will show up. And I think it’s absolutely AMAZING when they do! When God shows up with the grace I can’t muster. Well if He can, I can try.


Now.sick kids

I forgive the doctor who ignored me, I forgive the E.R. nurse who belittled me, I forgive and release the doctor who cleared Thaney to be discharged, only to have him back in hospital again hours later with pneumonia, I forgive the student nurses who put Thane in more pain and distress because they didn’t know what they were doing, I forgive the doctor who treated me like a paranoid mom  and said that constant illness was “par for the Down syndrome course”  I forgive, I release. In the immortal words of Elsa (or Anna, I never remember which) I ‘Let it go”

Because we NEARLY lost Thaney this year. But we didn’t.

And he will be stronger next year, and so will his mama. Next year I’ll know how to shake the white coat and get it to hear me. ( Hopefully I’ll know how to do it with grace.)

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