Beneath the surface of our outwardly typical boy is an epic battle between microbes in the wrong place and poison. He plays, sleeps, reads. He has his antibiotics at 7AM and 7PM.
Beneath the surface of my constant-motion, we decided to switch rooms between the children. Bo would get the larger room and we would move his medical preparation and storage stations into his bedroom. As the furniture moved back and forth, I felt happy and satisfied that it was going smoothly. But when I saw the desk with all his supplies in his room, I cracked. I wasn't ready. Wasn't ready for him to stop napping entirely. Wasn't ready for his supplies to NOT be in our room. Wasn't ready for him to see all the things and all the time that goes into his every-day ho-hum.
I know he knows that TPN is a different way of "eating." I know he knows this. I know he sees his IV pole every day. That he drags his backpack around. That he has to wait for us to hook-up and un-hook his IVs. I know. I know this. But I can't. I can't bear the idea of this little human seeing a table piled with equipment and supplies, several-times his size in volume. This mountain of medical- the first thing he sees every day? These things, dominating his space, dominating the landscape of his little boy's room.
I think I just need a storage unit that obscures these things from view. And a glass of wine. Or three.
Happy Fried- Day. Uh, yeah.
2 comments:
i love you.
So heartbreakingly honest.Any parent can relate to this sentiment, anyone with a loved one contending with the mountain of medical. Wish there was some way to bedazzle all that stuff, but that wouldn't make it any more normal, would it? I kept thinking about the mountains of healing accoutrements many people live with, but which they call "altars". Bo is an amazing kid, and you are amazing parents. Thinking about you. thank you for sharing.
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