Someday

Timothy had another rough day today. There’s still a hole where his J-tube was pulled, and from time to time, acid leaks out and burns his skin. It was one of those days where he was either awake and crying or asleep (and for most of the day the only way he would sleep was sprawled across my lap, stretched out so that there was no pressure on his little belly). And as I held him, I couldn’t help but think about how so much has changed over the last few months. And suddenly the things that seemed so little (so minor, in fact, that I never even thought about them) have now become the most important things in my life. and I found myself dreaming about someday. There are a lot of somedays in our lives right now…some of them will (hopefullyǃ) happen soon, some of them may not happen for a long time, some of them may never happen. But so much of what I used to think was important has fallen by the wayside, and it’s the somedays that I now find myself dreaming about.

--Someday Mark, Timmy, and I will be alone with no one else in the room, with no one watching, with no one calling to see if we’re all right when Timmy’s pulse ox alarms for just a little too long.

--Someday the three of us will sit together. I never knew how special that was—sitting together with your family. But we’ve never done it, at least not without either Mark or I perched on the edge of an armchair. And someday we’ll sit together…all three of us.

--Someday mine (or Mark’s) face will be the first my baby will see in the morning and the last he’ll see at night.

--Someday I’ll be there when my baby wakes up crying in the middle of the night, and I’ll be the one to rock him back to sleep.

--Someday I’ll be able to walk into my baby’s room in the middle of the night just to watch him sleep. I won’t have to call a stranger and give them a medical ID number just to find out how he’s doing.

--Someday, when I’m having a rough day, I’ll be able to completely lose it and cry while I hold my baby without having to worry about complete strangers walking in and asking if I’m okay.

--There are some somedays I’ve had to give up. I know I’ll never breastfeed, and I’ve come to terms with that. But my dream is that someday my baby will be able to eat by mouth.

--Someday we’ll pull that tube because he won’t need it any longer, and someday I won’t have to safety pin his g-tube to his diaper to keep the G-tube from pulling.

--Someday I will hear my baby laugh. I’ll hear him cry. I’ll hear him talk.

--Someday I won’t have to sign in every time I want to check on my baby and I won’t have to show an ID bracelet to a security guard.

--Someday I won’t have to go through the pain of telling my dad and my sister that they can’t see my child, because only four people are allowed to be on our list.

--Someday having people come to visit my son won’t mean that I have to leave the room, because someday more than two people at a time will be allowed to see him.

--Someday I’ll be like a normal mom—I’ll worry about whether or not a particular lotion or body wash is causing a rash, and I won’t have to worry about how best to keep the acid from burning his skin.

--Someday I won’t have to see my husband’s pain as he’s forced to say good-bye yet again to his wife and child and drive back to Columbus for another long five days.

--Someday I won’t sign consent forms for anesthesia with as much nonchalance as signing a permission slip for a field trip, because someday anesthesia will no longer be a routine procedure.

--Someday I’ll be able to eat in the same room with my son. Grabbing a bite to eat won’t require finding someone else to watch him while I sign out, go down three floors, walk down a long hallway, and walk a block and a half, just to fix myself a sandwich.

--Someday I will walk out of that hospital with my family. I’ll push a stroller loaded up with an emergency trach bag, a suction bag, a feeding pump, a pulse oximeter, and all the various and sundry things that we’ll be taking home with us. And I won’t care that I’m one of those moms that I said I would never be who has to load up the entire trunk just to go to the grocery store.

Someday…

And yet, in the midst of all my dreams about someday, there are so many little dreams that come true every day.

--Today I watched my son breathe entirely on his own, and I thought about how a month ago his pulmonologist told us he would definitely be going home on a ventilator. A week later, Timmy proved his doctors wrong.

--A few weeks ago I saw my son take his very first taste of milk. A few days after that I watched him suck down 15ml out of a bottle. If that isn’t miraculous, nothing is.

--Today I watched a group of 15 or 20 people stand outside my son’s hospital room during rounds and discuss what the best course of action for the day was. The number of people who invest in caring for my son every single day absolutely astounds me.

--Today after a long day of crying and restless sleep, I left my son sleeping peacefully. And as hard as it always is to tear myself away, I leave knowing that he’s in good hands.

--Today I held my son for hours, and while I held him I thought about all those days when he was too fragile to be held. I remembered the day I “held” him for the first time after one of his surgeries—they gently set him and his egg crate mattress on my lap.

--Today I listened to my son cry. When he first got the trach, I was scared that I would never know if he was upset unless I was looking right at him. But he can make a raspy sound when he cries, and I can tell from the change in his breathing when he starts to fuss. I can see him smile, and I can see him laugh. He has the most expressive pout in the world. He doesn’t need air moving through his vocal cords to communicate.

--Yesterday when someone came to do therapy with my son, he wouldn’t stop crying and reaching out for me. When I held him, he smiled. And I knew that even though I haven’t been able to be there for him in the way that normal moms are, he knows me. Even though we never shared those special moments with him eating and looking into my eyes (I should never have read a LaLeche League book while I was in the hospital recovering from my c-section), he knows me. And that’s a pretty special thing.

Today my son lives. He breathes. He cries and he laughs. He loves to sit up and he hates cold, wet Q-tips. He may not be eating right now, but he will soon. And somehow, in the face of everything, nothing else matters.