Sleep will come. Maybe.

Sometimes I wonder how I am functioning day after day. Remember the days of having a newborn and getting no sleep? Remember waking at every little whimper or cry and rushing to peek over the crib? Our son is nearing 19 months and we are still in the “newborn” sleep mode.

Last night, sleepy boy was ready for bed so we laid him in bed and prepared his feed. Connect his extension to his button, give him his reflux med, pour formula in the feeding bag, adjust the rate and dose of his feed, and pray he goes to sleep without too many whimpers. Now I have time to do some dishes or throw a load of laundry in, and perhaps I can take a shower and enjoy my only alone time. An hour after he’s been asleep he starts crying; he just needs his pacifier, so I search around the crib for it and pop it in his mouth. Back downstairs to finally sit down to watch a show. As soon as I hit the couch he starts crying again. Up the stairs I go to check on him. Back down again to un-pause the show. He starts crying again. Up again. Down again. Up again. Down again. Finally I just go to bed because this might be a long night and I need all of the winks of sleep I can get.

I think I’m asleep for 30 minutes. He’s up again. This time a bloody nose. Stop the feed. Hold him and plug his nose. If you’ve never done this for a small child, believe me, it’s not very enjoyable . He’s screaming and trying his best to get away from me. I try giving him his pacifier but he just continues to scream as I pull the blood covered pacifier out of his mouth. Ten minutes passes and then it’s finally stopped.  I hold him longer just to be sure it’s over. I want to cry and apologize to him for everything. I’m so SO sorry he has CDG. I’m sorry he has to work so hard to do anything. I’m sorry he won’t have the life we mapped out for him when he was just a tiny lima bean. Tears well up in my eyes as I think of all of the things he won’t do. I look at his sweet face and HE isn’t sorry. He gives me his charming little grin and I kiss his soft cheeks and the last thing I am is sorry. I’m so incredibly blessed he’s ours and I’m definitely not sorry for that.  So, I put my amazing little boy back in bed, start his feed again, and crawl back in bed knowing I will likely be up again in another 30 minutes.

Up again. Back to bed. Up again. Back to bed to grab my blanket and head back to his room to “sleep” in his rocker. Sit down. Up again. Stop his feed to hold him and hope he’ll stop coughing. Gently set him in his crib. Back to the chair. This is our night. This is our night many nights. Rushing to his bedside at every cry and whimper. You see, I don’t know if it’s as simple as he just wants his pacifier or if he’s thrown up all over himself? Is blood streaming out of his nose? When he bleeds he BLEEDS. (He has low clotting factors so bloody noses don’t require a Kleenex they require a receiving blanket.) Or God forbid, has he had a seizure? He has never, but we know he could.

Sleep will come. Someday. Maybe. For now there’s coffee and hazelnut creamer, and you know what? I’m not sorry. I’m so incredibly blessed. I get to wake up numerous times each night and care for a little boy who has touched so many hearts. I am lucky enough to kiss his cheeks and feel his smile in my heart. I get to care for a little boy whose determination has inspired countless individuals. So grateful. In need of a nap, beyond blessed, and most definitely…not sorry.