For a month I have written and deleted paragraphs and paragraphs of thoughts. I’ve lamented about the difficulty of premature birth, I’ve cried over the pain of pregnancy loss, I’ve laughed at the beauty of life, and I’ve typed out prayers upon prayers, begging for understanding, peace and…. yeah. You all know.
Nothing has felt quite right. Nothing captures the emotions the days and weeks and month before Charlotte’s birthday seem to bring for me.
The pain? How do you adequately express the sorrow over the pain and suffering of a child? How do you encapsulate the inadequacy, the loneliness, the outright depression and anxiety?
The joy? How do you share the intimacy of a survival story like Charlotte’s? How can I possibly use words to define the awe my daughter inspires in me? How can I accurately portray the ecstasy each breath she takes is for me?
So, my dear friends, I’ve struggled. Struggled to give you insight into what this is like for me. Struggled to find words that wouldn’t discredit the success Charlotte has each and every day. Struggled to do right by her own, individual efforts to write her own story. Because, in the end, this is her story.
And so, at the end of the day, at the end of this month of silence, I offer this:
I love my daughter. Love her with all the love a mother can hold. Every particle of my being, from my intangible soul, to my calloused hands, to my wrinkled brow, exists to love her. My love and respect for Charlotte has shaped me, molded me, and defined me.
With that love comes vulnerability and unease. No parent escapes it, no parents is free from the worry of what-is-to-come. But somewhere between making funeral plans for our unborn daughter and witnessing her live, that vulnerability has been intensified.
Despite that vulnerability, we love. Despite the delays. Despite the fear. Despite the sorrow and the illnesses and the pain.
We love. We honor. We cherish. We respect.
The evening of Charlotte’s birth, my father, father in law, and Peter were able to visit her in the NICU, to give her a name and a blessing. This is routinely done in our church, usually when the baby is a couple of months old. However, because we were not certain she would survive the night, we wanted her to have a blessing. To have some record of living.
Instead of placing their hands on her head, these men placed their hands on a plastic isolette. Instead of being in a church building, they were in the middle of the NICU. Instead of being surrounded by friends and family, heads bowed in prayer, they were surrounded by nurses, busy placing lines and administering medications.
When the blessing was given, one of the nurses told my father in law, “It’s up to her now. She’ll give it her all. That’s all we can ask of her.”
Charlotte gave her all.
I love her because, despite the fear, I can do nothing, but give mine as well.
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{I have to say here, that I cannot imagine the pain and sorrow and vulnerability felt by those parents who have not only planned a funeral, but acted out on those plans as well. I think part of the reason I have felt so hesitant to write over the past month, is that I do not want to oversell our perspective as one of ultimate pain. I have but glimpsed the reality that all too many parents live with on a daily basis, and I know that many of them would gladly live with the challenges Charlotte faces each and every day, if it meant they could hold their babies again. May we remember them always.}
Once again your words, so eloquently published, have touched my heart. I spent only two weeks at the side of an isolate. Sometimes, it’s easy for my hurried and scattered mind to forget that time. But your reflections brought back vivid memories and emotions of blessings my sons received while in the NICU, and the brief time I had when I could not even touch my child. Each day, is an amazing blessing. Each time they laugh, smile, kiss me, hug me, or even spend crying for a reason I cannot seem to find…is a gift. Thank you for that reminder. Love you always-Little Deb
It makes you appreciate so many small things, doesn’t it?
Beautiful writing and thoughts, as always. Everything with Charlotte is intensified – she makes us all feel the highest highs, and the most intense worry. Can only imagine what those feelings are like for her parents, the good and the bad. Love all of you.
Oh, Dr. B. How we love you.
Beautifully said. I got chills when you talked about Charlotte’s blessing in the NICU. It brought me right back to the day my daughters both had their blessings in the hospital. Same thing – no friends or family, just busy nurses and loud beeps and chimes as we all placed our hands over the girls’ warmers which at that point were still covered in plastic wrap. It was particularly urgent to have the blessings given as one of the babies was about to have emergency lifesaving surgery. We still didn’t know if either baby would live at that point. Thankfully they both survived. But the image of the chaplain standing over their beds will never leave my mind. Some things always stay with you, I suppose.
Thank you for sharing your story. You are such a gifted writer. You take these very difficult emotions and express them so eloquently.
Kristie, thank you for sharing your girls’ story. There are so many moments that will stay with me always. Thanks for letting me share them with you.
As always you capture the moment with an eloquence that most parents who have “survived” the NICU have had taken from them. I vividly remember coming into work the day after she was born and being the one chosen as her nurse that day. I had no idea what an impact all of you would have on ME…..thank you for letting me be a part of Charlotte’s early life. She is amazing and every time I see a picture of her or read of her latest “adventure” it makes my heart happy because I know it is more than was ever dreamed of. Much love and his to all of you–especially the birthday girl!
You, as well as the other nurses at CCH, will forever be our angel(s). Thank *you* for your dedication and love. We wouldn’t have survived without you.
Charlotte came to this world to do important things, and she has already accomplished so much. She is inspiring, as is her Mama. You give your all, and then some. Much love.
She’s certainly determined to accomplish all she can, that’s for sure! All our love to you and the family, especially this week.
Your writing is absolutely beautiful and touching and brought tears to my . You reminded me of my son’s baptism, while preparing to be transported to the children’s hospital. I was still with the doctor, but my husband was there with a priest, the neonatalogist hand bagging my son, and the entire transport team. Certainly not what I had envisioned, but a beautiful moment, nonetheless, I am sure. Thank you so much for sharing this with us.
Thank you for sharing his story here. I’m certain it was a beautiful moment. I hope one day we’ll all be able to see these moments we missed during life.
Again, you touch my heart, Dearest Granddaughter…..Cannot really know all you go through with Charlotte, but you help to convey that to me though these postings. Wish I had your gift of words….I’m inadequate in expressing my deep love and pride in and for you…hope you know…..always, Bala
If Charlotte can understand my love for her as well as I understand your love for me, I will consider that a success. Your love is something that strengthens me on a daily basis, Bala. Thanks for loving all of us.
Your words are touching and poignant. Charlotte is amazing, and you and your family are inspirational.
Kate, you and Henry (and Robin, and Ada {I love knowing her name!}) have been such a source of comfort and support for us. Thanks for being there from the beginning!