I can't make it better. Sean and I would do anything to ease her pain and suffering but we can't. She alone has to fight this war if she is live. We can't do it for her even though we would in a heart beat. It's not fair. It's not right.
She deserves the life of every other baby on your news feed. She deserves peaceful sleep. She deserves comfort and love when she's scared, tired, in pain, or hungry. She deserves reassurance that her situation often prevents us from providing. She deserves a full belly, not to be hungry and without food for half her life. She deserves vitality and strength not lethargy and stagnant growth. She deserves her biggest annoyance to be a diaper change not multiple surgical interventions and recoveries.
Her short life has brought mine into perspective. I am sure all parents feel that way. Yet most can't really value health until it's absent. I see and hear so many complaints and worries that seem so insignificant.
So your kid made a mess while playing and expanding his/her cognitive abilities. So you're sleepy because your baby was up to eat every three hours. So your kid is a picky. So you can't get anything done for holding your baby.
I would love to be shower-less, sleepless, at my messy home covered in spit up and have my girl in my lap breathing easy with a full belly. Instead my girl has never been outside of the hospital, she fights for breath, is on total parental nutrition because she can't tolerate taking food by mouth, and we're in constant fear she'll decompensate and end up being reintubated.
And what's more sad is a lot of babies here have it worse-some have it much worse. It's so hard to look into the faces of the parents who's kids are sicker than mine. What's there to say? They may never get the mundane moments at home we all long for. They may never send their babies to kindergarten or see them run and play. While so many parents long for excitement, we pray for the mundane. We pray for peace. Our daily wish often is just the hope of being able to hold and rock our babies. It doesn't seem like much to ask but in these circumstances it is a mighty blessing. 10ml of milk by mouth is a blessing. Diapers without blood are blessings. The sound of our babies crying is a blessing. I know that sounds crazy. But until you've watched the silent struggle of your child trying to cry while ventilated-you just can't understand.
In the last four weeks I have learned that often times our blessings come in such tiny packages they are easily overlooked. Therefore you have to dig to get past all ridiculously superficial and materialistic fluff to find true blessings. Blessings of health, love, comfort, reassurance, peace, and the joy of just being with the ones you love.
I encourage everyone reading this to take the time to dig. Don't wait until you're forced into a handoff off to appreciate th mundane moments. Don't take small blessings for granted. Love earnestly and wholely. It's all that really matters.