Taking care of Rowan has been very difficult. He’s actually less work than I thought he’d be, but the responsibility of taking care of your child when they are so sick 24/7 is extremely draining. Add a two year old who just wants you to play with her and there are a lot of moments where I find myself counting to ten. The hardest thing is not being able to leave the house. I haven’t left my house since Rowan’s doctor’s appointment last week. Hopefully, with some new smaller oxygen tanks for travel and Rowan being able to be off the feeding pump some, we will be able to start leaving at least to go to the park or SOMEWHERE soon.
It’s been wonderful that the weather has allowed me to open all our windows so at least our house doesn’t feel quite so stuffy.
To those of you who have brought dinners, thank you again! Just seeing someone over the age of two for a few minutes a day is great. The food has all been spectacular as well.
To any of you who have been thinking “I’d like to go visit, but I don’t want to bother them” – by all means PLEASE bother us. Having someone else around makes me feel a bit less crazy. Being here and knowing that something could happen where I’d have to take Rowan to the hospital and manage Evelyn is terrifying. Just having someone else around calms me down, even if they just share news or watch TV with me.
While I’ve been trying to cope with my full time nursing job, my daughter’s increasing need for my attention, and my husband’s long work hours – Rowan has been doing great! He’s weaned down meds 3 times since being home, he is getting used to a pacifier being in his mouth and maybe even likes it, and the physical therapist came by yesterday and said he was like a completely different kid from when she saw him 5 days before.
This kid is a fighter. Anything that has been his to fight – be it recovery or rehabilitation – he has done it. He continues to amaze me. I know that as long as the battle is something you can fight – Rowan will win. Waiting the next 19 days to see if it is something he can fight or not…well that’s the real thing that keeps me up at night. I do know that no matter what happens, I am so proud of my son.
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