46 days

46 days ago, my cousin’s baby was rushed to the ER and pronounced dead.

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.

What next?

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12 thoughts on “46 days

  1. Irishey says:

    Still praying for your family and continued improvement for your baby cousin. Babies are resilient and often surprise us with miraculous recoveries.

    Perhaps, your cousin’s father’s accident was meant to pave the way in giving this baby parents who are strong, experienced and prepared for possible challenges they may face in caring for him.

    I believe every person has purposes in this life we are meant to fulfill. I also think many of us never know the effect we have on others, or that we have accomplished one of our purposes. This little guy already has affected many people. He will continue to touch hearts, fulfilling part of his purpose. It’s wonderful his family knows how to be there for him.

    Hugs to all of you,

    Irishey

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  2. SunnyGirl says:

    It’s wonderful news.

    Enjoy what is one day at a time and whatever lies ahead is in God’s hands and He will deliver whatever strength or comfort is needed.

    I have a grandniece that weighed 13 oz at birth and she is a bright happy 3 year old now.Miracles are happening all around us all the time.

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  3. Minelle says:

    I pray for that miracle! I know how difficult this time will be. Fear of being away from the security of the specialists and doctors alone will consume them. Hopefully they will be able to focus a little on each other and the gift of going home.

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  4. Constance Masters says:

    I hope with all my heart that he will one day experience all those normal things. All we can do is take one day at a time.’ Give us the strength to accept the things I cannot change’ . I’m over the moon for your family that he is at least at home 🙂

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  5. Roz says:

    Ana, thank you so much for the update. You have all been in my thoughts and prayers. So happy to hear he is able to go home. That is a wonderful milestone.

    One step at the time, day by day. Continuing to send positive thoughts and prayers.

    Hugs,
    Roz

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  6. Katie says:

    Hi Ana, 🙂

    I am so happy to hear that the baby is home. It is important to take it a day at a time. Being in a home environment and working with nurses, PT and OT as well as other specialists will help the baby, and his parents in so many ways. Often there is a close relationship established between the caregivers and the family and that reduces a great deal of stress. Babies are resilient and strong, in spite of their size. They can teach us a lot. Especially about love, which is the most important thing.

    My prayers continue for your family, and for that sweet little boy as he continues to improve. I’d like to think that what Irishey said is true- perhaps the father’s situation has made them all more ready to help their son. We do grow from hard experiences. Many hugs sent your way, Ana!

    ❤ Katie

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  7. Penelope says:

    I feel for you and your family, Ana. So much to bear.

    So happy that baby is a fighter and has given himself a chance. I hope that things only ever get better for him.

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  8. catrouble says:

    Thanks for the update Ana…continuing to send prayers, healing energy and positive thoughts that your little cousin improves.

    Hugs and Blessings,
    Cat

    Like

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