just living

This morning when I woke up I was thinking how badly I wish Sol could be hitting milestones every other baby his age are hitting. It hurts a lot reading those updates on how old your child is and what they should be doing and knowing your baby is far behind on those things. For a moment I thought to myself, man I wish he was normal.
This seems obvious right? Everyone wishes the same thing, that he was a normal baby, of course I wished he didn't have this medical condition as I have said many times, but I don't think I ever stopped and thought those exact words, I wish he was 'normal'. I almost instantly regretted it. No one is 100% normal, even those who think they are, what is normal right? We still work towards milestones every day, we are just very far behind. Although, almost as soon as I thought that we had an incident that made me realize I don't wish he was normal, what I wish is that i didn't have to worry about him passing away at any second. Being normal makes it seem a lot less likely that a child will pass away even if that isn't a promise, it is easier. Sol having the condition he has means he wont live as long as those normal people. I know I've said this before but just reminding.
Sol had a rough night, something has been bothering him so he slept in this morning for a change. After he woke up I brought him to the living room to start our day. Summer school is going on this week so Sol and I get a little cuddle time in the mornings before the nurse gets in and im off getting things done. But Sol had different plans this morning. As I was changing his diaper he started crying really hard for a few seconds, after that his heart rate dropped to 90, which isn't very normal of him, but his lips turned a blue color. He recovered in seconds but I instantly worried if he was going to stay recovered or go down hill from this. I called my husband to come home and Sol seemed to be doing better, I did end up bagging him just to see if that would help the color come back along with suctioning and doing some coughs on him. He was fine until Thiago got home and pretty shortly after he walked in the door he did another little episode, a hard cry, dip in heart rate, blueish lips. Seconds he recovered again but what was going on?! We called the doctors and also had a visit already scheduled with his family doctor anyway. After telling madison what happened they seemed to believe he had a plug in his trach and wanted us to change out the trach and what not to see if that helped. I'm really doubtful it was a plug in the trach, it seems like something else was going on. Regardless, we made the changes they recommended, but he didn't have any more episodes the rest of today so far, even before any changes were made. He has still been throwing up, so his family doctor wonders if he was retching during this episode and that is what caused everything. Who knows, but we ended up doing an xray just to rule out lung issues, and the xray came back looking good.
As quickly as I wished for normal, I wish for just living. I really don't like having days like today to remind me to just be happy with what we have because I know any day things could change and most likely it won't be for the better.