With Her

By Sarah Bamford

February 4, 2014, was one of the happiest days on my life. It was the day we found out that our second child was a baby girl. All my life I had imagined what it’d be like to raise a daughter, and it was about to become a reality.  Our first child was a little boy, and now he was getting a baby sister. It was the stereotypical “perfect” family– one boy and one girl.  Kate arrived on June 28, 2014, and for the first six weeks of her life, things honestly felt perfect.

Then it all started to fall apart.

It was subtle at first, and then life spiraled out of control. What we thought was a simple respiratory infection turned out to be the beginning of a rare progressive neuromuscular disorder. With one Google search, life as we knew it changed forever by a five letter acronym– SMARD. We went from planning our daughter’s future to planning her funeral. September 25, 2014, two days after Kate came home on hospice, was one of the worst days of my life. My daughter died in my arms, just three days shy of turning three months old. Her entire life was 90 days long.

A year and a half later I am still picking up the pieces. I’m learning how to navigate this new world without her. Some days, it’s like putting together a mosaic without being able to see the bigger picture. The assembly of the broken pieces seems odd and ugly. Other days, I can step back just enough to begin to appreciate the beauty of what I am creating. It’s amazing how I lived just fine in a world without her for 30 years, but now that she existed, I’m struggling to figure out how to live without her for the rest of my life. I miss her with every breath I take. I miss all the things I imagined we’d do together but never will. I miss the traditional mother/daughter relationship we didn’t get to have. We will never get to go on all day shopping trips or chat on the phone. I will never get to braid her hair, paint her nails, or watch her try on wedding dresses.

But at the same time, I am learning that we are still connected. I am discovering that I can still do things “with” her, just not in the traditional sense. She is with me everywhere I go and in everything I do. With her, I comfort other grieving mothers. With her, I calm the babies I care for in the NICU. With her, I ease the fears of frightened mothers as they sit by their sick baby’s side. With her, I teach my boys about life and death, Heaven and Earth. With her, I raise awareness.  With her, I renew my faith. With her, I hope. With her, I turn tragedy into purpose. With her, I write the inner thoughts of my soul. With her, I give the bereaved mother a voice. With her, my broken heart spreads love.

She has given me the powerful gift of empathy, and it is my duty as her mother to share her legacy. I have witnessed her story bring people together. I have seen it strengthen relationships. I have met so many amazing, wonderful people because of her. Some are on this same awful journey, and some are on the outside offering never ending support. Strangers have become my dear friends through our kinship of brokenness.

I wouldn’t be who I am today if it wasn’t for my Kate. She is with me always, guiding me, helping me understand, and making me better. She reminds me that life is precious and a gift. Because of her, I savor the moments I am blessed to have with her brothers. She’s a part of me, woven into my being. This isn’t the mother/daughter relationship I envisioned, but it’s ours, and it’s one of the most beautiful ones that has ever existed.

Sarah is a wife, mother and NICU RN. She has two busy boys here on Earth and one beautiful daughter in Heaven.  When she is not chasing her boys, or taking care of babies in the NICU, she spends time writing on her blog, Karry On Kate.  You can also find her on Facebook.