Discharge Dates

There’s something that every NICU parent yearns for with all their might, mind, and strength:

A discharge date.

It looms in front of us, taunting us with it’s close proximity at times, and disappearing forever at others. But we focus on that discharge date because it represents a chance for normalcy. A chance for a family to feel whole, a chance for a child and a parent to finally assume their proper roles. A chance to finally begin, to finally start, to finally act on all the things we dreamt about in the NICU.

In Charlotte’s case, a discharge date from the NICU was merely the beginning of a short vacation at home, abruptly ended with a re-admission for a rather severe illness. Since that time, almost three years ago, we’ve made many, many phone calls to grandparents to inform them that Charlotte was back in the hospital.

For me, every time Charlotte is readmitted to the hospital, it is a reminder of how little control we have over her life. In our case, Charlotte’s readmissions are often open-ended. She’s not typically ill, but usually, malfunctioning in some capacity. (Currently, she’s readmitted for this nasty habit she has of not breathing.) We usually leave with more questions than answers, and often we are gaining medical devices instead of losing them.

I used to think that arriving at our NICU discharge date would solve everything; that life would suddenly be better if we could only make it home. Once there, however, we quickly realized life was just beginning to get interesting.

So new milestones emerged: things would be better once she was eating by mouth, or off of oxygen, or receiving the right therapies. Once she finished the right therapies, or started a new formula, or had that one procedure, things would settle down.

But here’s what I’ve learned in our experience:

Opportunities don’t wait for discharge dates.

Every time I watch the nurses place an ID band on her scarred ankles, I am reminded that there’s no discharge date from worrying about your children. I know this isn’t unique to special needs children, but there is something harsh about the reality check a hospital admission provides. A sign-on-the-dotted-line reminder that life is fragile and resilient, harsh and comforting, loud and muted: all at the same time.

If I waited for life to be perfect with Charlotte (or Caleb, or Peter, or anyone else for that matter), we would never begin, well, anything. It may be that next week we find out she’s 100% healthy and we’re free of medical devices for the rest of our lives. It may be 20 years from now that we receive that news. Or possibly never.

But if I spend my life waiting for a “discharge date” how many experiences will I miss? How many opportunities will pass us by as we sit in the waiting room of life?

I have one chance with Charlotte. One lifetime to convey her divine worth, her inherent power, her ability to thrive. One moment in time to teach her about love, about family, about sacrifice and success. One shot to explain how deeply her father loves her, and how unbelievably devoted her brother is to her.

If I am lucky, that moment will last 100 years, and her lifetime will continue long after I am gone. But whether it lasts another century, or our time together is gone tonight, matters little if I am not willing to act in the moment I have right now.

Truly, it is the only one any of us are guaranteed.

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8 responses

  1. We look for endings to trials and beginnings of possibilities most earnestly for those we love and most especially those for whom we feel–by choice–responsible. When your child looks up at you when the shot or the I.V. or the procedure or your leaving did hurt … it’s always straight in the eye and full of betrayed yet forgiven bewilderment at this breach of the “it’s going to be alright” clause in the parent/child contract.

    And you weep within and without, and you hold them, and you whisper what you want to say but truly cannot for the short-term promise: “It will be, you will be, alright.”

    And so, my darling daughter, I say that it will be.

    It most likely will not be what we ordered, signed up for, had expected, or even wished for. It will not be what our present or but barely-past self would choose. But because we love, it will be alright. Embracing and celebrating the holy present of the moment, of the now, often seems to require a focused intensity that precludes even a furtive forward glance–that somehow we can’t hold the now without letting go of a future when.

    So, in a now that despite its ofttimes exquisite joy often does hurt, I would wipe away our tears and drown in Charlotte’s smile. Because our now is built of love, the when–whatever and whenever it is–will be alright.

    I promise.

  2. Just read your comments on the “preemie”…I never have any luck trying to respond on there….read Jeffrey’s comments as well. Wish I had the gift of of tongues you two have in expressing yourself. Wish I could constantly remember how important THIS moment is….I tend to worry or focus alot on what is going to happen next. Know our thoughts and prayers are with you all at this time…love, always.

    Papa leaves in a couple of hours for girls camp to work in the kitchen with Willie, etc. I choose to stay here. Bala

  3. My prayers to you and your family. Jeff’s response to Amada is very moving and reminds all of us to live for today and to love what we have now and try not to worry about the future, May God Bless Charlotte and her family. Dolly

  4. I too am moved both by your post, Amanda as well as your dad’s. If I may, I want to send this post on to my children and to friends of mine who all have children with the normal challenges of life, not the extraordinary challenges that Charlotte has. You posts are appropriated for all parents. God Bless you all, and especially hold Charlotte in His Tender, Loving, Caring, and Healing Hands. Ann

  5. So beautiful Amanda and Jeff’s response as well. Thanks for sharing your heart and wisdom. What an important reminder of being in the present and loving what is. Our hearts and prayers go out to all of you. Sweet Charlotte <3

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