The Day to Day

Our days are pretty simple around here. (If you consider six therapy sessions, four days of special education, and a medical appointment or two every week “simple”). We’ve reached this point where we mostly just go about our day to day lives and have a crisis here and there.

Charlotte is currently sitting on the potty (not actually going potty, that’s a ridiculous thing for a three year old to do on the potty, just sitting there) singing her numbers.

“Eight, Nine, Seven, Ninechween, One, Three, Five, Sevenchween.”

This morning we walked Caleb to school and she cracked jokes and yelled at us the entire way. Charlotte loves to look at pictures, and it’s even better if they are pictures of her. She can name every princess, and she wields a plastic sword with the authority only a little sister can possess. She’s absolutely certain she should be able to dictate the lives of everyone around her. (We let her. It’s a problem.)

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Somewhere in the last three years, our daughter grew up into a little girl.

Our days are not consumed with the frantic question of “Will she live?” but rather with the ever present question of, “How will she live?”

It’s a weird transition to make, and it’s one I make with a very acute awareness that others will never have this chance.

I see her living and I stand in awe.

It’s just normal stuff,

but it’s miraculous.

Just very simple, day to day miracles.

NICU Nurse Appreciation

Last Sunday was the annual appreciation day for NICU nurses. There were lots of posts on my Facebook newsfeed thanking the nurses who time and time again saved and loved my friends’ babies. There was this poignant letter from a preemie mom to a NICU nurse that was shared time and time again. I thought a lot that day about what NICU nurses meant to us, and how we could possibly even begin to thank them for the role they played in our lives.

It’s difficult to write down what a NICU nurse means to a family like ours. We had a relatively unique experience in our NICU. Being at a community hospital meant that the NICU was very small– 15 beds was over capacity when we were there. But it was integrated into a much larger hospital network– The Childrens’ Hospital of Philadelphia– giving us access to arguably the best staff in the country. This combination meant that we became very close to some absolutely incredible nurses.

Many of the posts on Sunday focused on what NICU nurses do for neonates. To be certain, Charlotte is alive because of the care and attention her nurses brought to the table each and every day. There were days when the nurses knew before anyone else that CA needed something– a blood transfusion, a hold on her feeds, a day of very little touching. This intuition undoubtedly saved her life, and I see the product of their labors every time she smiles and dances across the room. Her laughter fills our home because they did more than their job–they loved her.

But more this year I couldn’t help but think of what else NICU nurses (and other unit staff!) did for our family.

I think about the way you taught me to care for Charlotte. Teaching me to change a diaper on a baby weighing barely a pound did more than just address the hygiene needs of our daughter– it reminded me of my place in her life. I was there to take care of her, and you always made sure I knew that.

I think of the times you led my father-in-law over to her crib, and gave him an update, making sure he understood the latest changes. He went out of his way to be there with our daughter, and you went out of your way to be there for him. You understood that her survival was dependent on all of us loving her, and you recognized the important role he played in all of that. I think of the times you prepared Charlotte to be moved from her bed to the arms of a loving grandparent, aunt, uncle, cousin or friend. You never complained that we were creating all this extra work for you (which, I know, we totally were!) but you saw that Charlotte had a community of people who loved her, and you made sure she felt connected to that community.

I think of the way you had to help Peter through those first terrifying days. His wife, in recovery, barely conscious, and his daughter, clinging to life with the thin rope of medical technology. I’ll never know what those hours were like, but I imagine him standing there, looking at her. I imagine you seeing him, knowing the road he was about to start down. I can only imagine the patience you must have had, as you watched him meet our baby girl. I think of the first time Caleb entered the NICU, and how accommodating you all were. He was a disaster, as always, but you re-directed him and answered his many questions. You gave him hope when I wasn’t sure I could. I think about that all the time.

I think about the way you shared your lives with me. We talked about sending a child with special needs away to camp– and how scary and wonderful it was. We talked about MRIs to check for cancer, about husbands being deployed, about daughters finding out they were pregnant. We talked about maternity leave, and the Steelers. We talked about how much it really, really sucks to see so many innocent babies in such torture, and we talked about what a blessing it was to have their presence in our lives. We talked about Charlotte’s future, her poop, and her daily progress. You cried with me when we got bad news and you stood stoic when I wasn’t sure I could.  You helped me keep pumping when I wanted to give up, and you helped me give up when I wanted to keep going, but knew I shouldn’t.

I think about the way the unit felt like a family– the way I missed you all so much when we were transferred to CHOP or even more so when we finally went home. I think about the way you still offer support and encouragement three years later, and how knowing you has changed the person I am today. I think about how you made us feel so special, and I think about all the other families who probably feel exactly the same way.

I think about you all, so very, very often.

Because I don’t just see you in Charlotte.

I see you in me.

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.

Dear Charlotte: Your due date

Dear Charlotte-

I’m not sure when it happened, but you have started to grow up. This week you found a box full of momentos from the NICU. In the box, you found the first hat you ever wore, and you held it up with pride. “Tiny baby hat!” you exclaimed.

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Seeing you holding that hat was a jarring experience. Those moments sitting the in the NICU, staring at you with your little yellow hat, I never imagined a day when you would play with it. You held it with such ease, not understanding the significance of the object. I remember so vividly placing that hat on your fragile head, so scared that I would hurt you. I remember laying that hat next to your arm, as I slid my wedding band over your hand. We wanted to try to represent how small you were, but honestly, there isn’t anyway to do that justice.

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Charlotte’s first hat, about the height of a bobby pin

Three years later, you know nothing of that time. You pick at the scars on your arms and legs, and you are very aware of your g-tube and trach, but the details of your birth don’t really matter to you yet.

Charlotte, today is your due date.

Today represents a day that could have spared you so much pain and suffering. But watching you this week, I realized it also represents a day that you have overcome. Through the hard work and dedication of so many people around you, and through your own strength and determination, Charlotte, you have survived.

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I hope that this day can serve as a reminder to you, Charlotte, that we all have some hill to climb. There will be many around you who appear to have it easy. And it can be frustrating when those who seem to have it so easy, struggle or complain.

But we all have a (literal or figural) box of momentos from our life, filled with our own unique tiny little yellow hats representing the struggles we have endured. Never, my dear, disregard the contents of another’s box. You may never understand, and you may never know what struggles they have endured.

It would be easy to look in my box, Charlotte, and see only a yellow hat.

It takes compassion and love to understand that it represents so much more.

May your due date serve as a reminder to never disregard the tiny yellow hats in other people’s lives.

March of Dimes Capitol Day

I had the great opportunity to visit Sacramento with the California chapter of the March of Dimes yesterday. I went as an Ambassador Mom, to speak with members of the California legislature about current bills supported by the MOD. (You can read about the bills we supported here, here, and here).

The trip was a reminder of how powerful our stories can be. It made me think about how powerful it will be when Charlotte can tell her own story. When she will be able to use her own voice, damaged as it may be from trachs and paralyzed vocal chords, to tell of her triumph. I’m excited for that day– when she is able to share her perspective and experience.

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I know that there is always criticism when it comes to large organizations (and I wasn’t a huge fan of how the MOD was involved with the P17 shots) but I am grateful for the way they use their voice to lobby for women and babies. Whatever you think of a corporate entity such as the MOD– the men and women I have met working for the March of Dimes have been dedicated to healthy babies and healthy moms. I’m grateful for their voices, efforts, and accomplishments.

Without them, Charlotte wouldn’t have a story to tell.

And what a story it will be.