46 days afterward, said baby is traveling home for the first time. Accompanied by a plethora of medical equipment and arrangements for an equally large plethora of medications, in-home nursing care, outpatient and in-home therapies, and safety procedure/warning signs training for his parents and extended family.
In those 46 days, I and my entire family have been grateful for all of the prayers, thoughts, and kind messages you have sent our way. In answer to questions about his progress and prognosis, the most constant answer seems to be, “We don’t know.” He’s been successfully off the ventilator for a few weeks, and his medication has been reduced somewhat. He’s still taking far more drugs than is probably good for him in the long term, but his doctors are trying to manage all of his various symptoms. Whether they have been able to treat the core problem, I don’t know.
It’s funny how discharge day seems to bring fear, even if it has been much anticipated. 46 days ago, discharge 45 days ago would have been a cause for celebration. Today, it is a huge milestone but also a leap into a dark abyss.
I know that my cousin and his wife have an enormous set of struggles ahead of them, but today I feel for their little baby. How confusing it must be to enter this world, work hard to learn things like eating and rolling over and sitting up, and then be plunged into the whirling cacophony of an ER and weeks of hospitalization.
Each of those 46 days has been a fight for breath, a fight for life.
What have I done in those 46 days? Become consumed in the whirling cacophony of multiple irreconcilable obligations.
I will do better, little cousin’s baby. By fighting this hard to stay here, you’ve made me see that I am at times cavalier about my days. What I want for you is a “normal” life, whatever that means. To throw a tantrum because you most definitely did NOT want your banana peeled for you. To play football and make painted clay handprints. To get sent home for wearing T-shirts with questionable slogans and told off for sleeping through the dreaded sixth repetition of the sex ed class.
As my cousin’s baby struggles each day to make movements, I wonder (I think perhaps we all wonder) at what point we will need to simply be grateful he survived and not ask anything more. Whether “normal” is no longer going to be part of our vocabulary. We’ve been through this once before, you see. My cousin’s dad was in an accident many years ago and never fully recovered. The weeks of intensive therapies slowly changed from hopeful (“We can do it!”) to putting on a good face (“He survived, didn’t he?”)
I watch my cousin and his family, and I wonder whether fate could be cruel enough to visit the same result twice.
In an instant, a person’s (a family’s) life can change forever.
46 days ago, I thought my family would be minus its newest member. I am glad that is not the case, but I wonder.