There Are No Gender Politics in the NICU – Baby With a ‘Bucket List’

Amie Lee writes about about her own terminally ill baby and a sensitive, heroic man – her husband Lamont.

 

Why were people surprised to learn that baby Avery’s Bucket List was written by her dad? I read of this reaction in a Good Feed Blog entry written by my friend Joanna Schroeder, The ‘Bucket List’ Baby and What Makes a Good Man, and my instant reaction was sadness. Sadness that Avery passed, and sadness that commenters on his blog tried to take something away from her father by expressing surprise that the blog was written by him and not her mother. Sadness that gender debate even surfaced in the midst of this tragedy. Sadness that anyone would ever vocalize surprise that her father wrote her heartfelt blog entries.

Let me tell you about a world where gender roles do not matter. The place is the NICU. The Neonatal Intensive Care Unit. I can tell you that the NICU has a way of equalizing all parents. It does not matter what race you are, what religion, what gender, what sexual orientation, none of it matters. Even the big, burly, hunting and fishing “man’s man” sits in the same vulnerable position as the most feminine of tiny mothers, whispering quietly to his little baby, and trying to will them to live. We all just looked at each other thinking “I know what the hell you are going through, and no one else does.”

I’m married to a guy who used to sing Elton John’s “Your Song”, and read the classic version of Peter Pan to our dying daughter. He made a great Tink. Gender is not a debate to be had in the NICU. There are only parents. Trying to cope with the hand they have been dealt.

I saw many reactions in the NICU. I saw women that avoided their sick baby at all costs, too afraid to deal with the pain and emotion of the unknown. I saw men sit for hours and even days by their child’s bedside, crying and entreating a higher power. I saw women, only hours after giving birth via c-section, sit next to their baby’s bedside completely ignoring their own pain. I saw men collapse on the nursery floor in desperation when they were told their baby would not live through the night. No one is shocked to see a dad cry, sing, or buy a pink dress. No one is bewildered to see a mom refuse to hold her tiny baby.

I saw people from all walks of life, and never once witnessed anyone express surprise at a man showing deep emotion, or a woman showing none. When our daughter Mya died, five neonatologists, all men, came into her nursery, held her, stroked her cheek, and broke down tearfully. We all just knew we were human, and were doing the best we could. There was no protocol, no specific roles to fill in the midst of tragedy, and so no one expected it.

It was the new normal.

Author’s note: The lead photo is one I took of Lamont, holding Mya about 2 months before she died. He was going on probably less than 3 hours of sleep over 2 or 3 days here, which actually was pretty common because he worked and then spent every waking hour in the NICU.

The photo below is Lamont and Stella (Mya’s twin sister) at our home, just after Mya died. 

 

All images are property of Amie Lee Photography.

 

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About Amie Lee

Amie is a photographer and stay at home mom who loves creating. She is a Midwest transplant who lives in West Phoenix with her husband Lamont, five children, and three dogs. She prefers backpacks to purses, loves documentaries and cupcakes, and is crazy about her family. Amie spends time volunteering in the NICU, and provides families with infant bereavement photography.

Comments

  1. This was beautiful. Thank you.

  2. There is nothing worse than being a NICU parent, but there is nothing greater than being a NICU parent who is blessed and lucky enough to take your child home.

    Our twins were both in the NICU for three weeks — and one had to be transported to a higher-level NICU after 36 hours. (She died and was revived en route.) We experienced the gut-wrenching lows, watching them turn a dial an 1/8 of an inch and hoping for incremental improvements — as well as the dizzying highs of being able to bring them home.

    I am grateful every day for our girls and their health, and the NICU experience (both good and bad) will be with me always.

    Thank you for sharing this. You’ve encapsulated the NICU experience in a way that both touched me and will educate others.

  3. Thank you for your kind words Harley. I’m happy to hear both of your girls made it home.

  4. Thank you for sharing your story, so many people are blessed to have healthy babies and smooth deliveries and never know hardships like yours. I see photos of -to me- enormous newborns in the arms of their smiling mothers and I think, how does that happen, they are born and magically are home in their cribs? Or hear comical stories of how your friend’s water broke. I never feel equiped with the right reaction. Your article truly captured the feeling of being there. The NICU puts life in perspective. It strips everything else away that you might have worried about before. Such a strange place you do not want to be, but are so grateful for. Our twin daughters were also in the NICU. It breaks my heart to learn about babies who did not make it home. I hope your hearts heal as much as they can and you continue to help educate others, you write in a way that really brings readers into your experience.

  5. Just to show that this is not something ‘new,’ that men and fathers have always been this way…

    My 80-year-old grandfather has told me many times how he sat in the NICU for days praying and crying–FOUR different times. My father’s body, along with two of his brothers’, and his sister’s, all rejected their mother’s blood when they were born. (None of them were multiples.) My father and one of his brothers survived. His other brother and his sister did not. My grandfather said how each time felt just as awful and painful as the last. That was over fifty years ago, and he still tears up when he talks about sitting in a rocking chair all night holding my father’s baby blanket and praying he’d make it until the morning.

  6. Your story brought tears to my eyes. I think of the pain you two have endured and give you a hand. My son was diagnosed with aortic valve stenosis and bicuspid aortic valve. it’s relatively common so I don’t worry, but there are some nights where I fear the worst for him and can’t help but tear up and feel that lump in my throat. I jelly pull him closer just to hear him breathing. I am also a stay at home parent and innit every moment I have with him. Signet it be him running up to me to give me a kiss or him throwing a tantrum. Lol much props goes out to you and your husband and tell him I said thank you for showing everyone what a father would go through for their child.

  7. Your story brought tears to my eyes. I think of the pain you two have endured and give you a hand. My son was diagnosed with aortic valve stenosis and bicuspid aortic valve. it’s relatively common so I don’t worry, but there are some nights where I fear the worst for him and can’t help but tear up and feel that lump in my throat. I just pull him closer just to hear him breathing. I am also a stay at home parent and enjoy every moment I have with him. wether it be him running up to me to give me a kiss or him throwing a tantrum. Lol much props goes out to you and your husband and tell him I said thank you for showing everyone what a father would go through for their child.

  8. I’ve been there, crying next to my son’s Nicu pod, staring out the window onto Broadway in Washington Heights, praying that my son wasn’t going to have to suffer. No one can comfort you, no one understands unless they too have a child in that situation.
    Thanks for sharing this, it’s beautiful and it’s why I never take for granted the fact that my son came home.

  9. Our first daughter Diana Victoria was born with Trisomy 13 and lived for 17 days in the NICU. My husband was by my side every single day, all day, taking care of our daughter.

    The morning she passed away, the neonatologist had tears in his eyes, because he just could not save her, nobody could really, we could just love her for whatever amount of days we had.

    We completely understand the separate world that is the NICU, there are no women or men, just parents, fighting for their babies and giving them all the love in their hearts.

    Thank you for sharing, God Bless.

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