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“Today, October 15th, is Infant Loss Remembrance Day. To some of us, that means nothing. To others of us, it means everything. I know that on this day, my friend Kaley is remembering and reminiscing, mourning AND celebrating the life of her precious little daughter Anabelle. I watched from the sidelines last year as Kaley and her husband walked through one of the most painful journeys anyone could ever walk through. In the midst of it, Kaley exuded grace, strength, and above all else, a solid trust and hope in God. I think you too will see that, as you read her story below.” ~Hayley Hengst

With October being Infant Loss Remembrance month, I have had this series of thoughts running through my head. I had a baby. I’m a mom. I lost my baby. Am I still a mom? It would be easy to dismiss these sentences and say yes, yes, of course you’re still a mom! But, unless you have been in my shoes, it isn’t always so easy to accept that. Yes, I am very much still mom to my beautiful, miracle of a baby, even though she isn’t with me anymore. I can’t physically mother her. I can’t hold her, kiss her, and be her mom. I still have all those mom feelings, but I have no baby to give them to. I don’t say that to have you feel sorry for me. Honestly, I don’t. I’m still getting used to this situation. I never thought in my wildest dreams I would be having to wrestle through this reality. BUT I wouldn’t change a single thing. Don’t get me wrong, if I could go back and make Anabelle’s DNA normal and non-deleted, addition’d and translocated, I would in a heartbeat. But I can’t. I believe this is the story God is writing for me and my husband. It took me a while to accept that. Thankfully, we had a heads up there was something special with our baby girl and she was leaving us all (doctors, specialists, parents) wondering what was going to happen. Want to know what happened? Anabelle happened. It was a miracle she even survived at all. She was given a 1% chance of making it to 30 weeks. She made her grand entrance via an emergency C-section at 36 1/2 weeks. Flat out a miracle. She was born feisty, a fighter, one brave little thing with a full head of hair. She changed my world for the better and for forever. 

I had never known that type of love before. Dang, it’s powerful, isn’t it Mamas? All of a sudden life isn’t about you anymore. You created something amazing and they’re living and all you want to do is just love them with all that you have. You want to protect, defend and care for their every need. Anabelle had many needs. Mainly her breathing. Due to her unknown chromosomal abnormalities, she had a very complicated airway that led to her getting a tracheostomy. The tracheostomy was a hard pill to swallow. This journey seemed scary, daunting, the UNKNOWN. We adjusted, we learned, and we grew. In the end, after a 3 1/2 month long battle, we lost our baby girl in December. Hands down the worst, hardest day of my entire life was leaving her hospital room knowing I would not be able to hold her again until we meet in Heaven. Again, I wouldn’t change a thing. 

You may be reading this and wondering how I can say that. I can say it because I believe in something bigger than me, or Anabelle, or any of us. I believe that everything happens for a reason. I believe that my God loved me enough to give me Anabelle just the way she was for a purpose. I know she taught me a lifetime worth of lessons in her little life more than I could have ever learned without her. Since her passing, I have been able to see glimpses into what I think her purpose was here on earth. I have had several people send me messages letting me know how they followed along on our journey with Anabelle and have been inspired to fight their own battle with bravery and grace ranging from terminal cancer to just taking the next step in their own faith walk.

My biggest desire for Anabelle was to be known. Not just known by her parents, doctors and immediate family. I wanted people to know her the best they could through pictures, videos and Facebook posts, Instagram and texts. Thank God for social media! My second desire for her short life was to show bravery and grace. She was so brave to have endured 3 1/2 months of hospitals, surgeries and loud NICU rooms. She was brave for fighting every day so her Mama and Daddy could get to know her and love her. I have been so blessed to have such a great community around me and my husband. We have had endless support throughout this year and it’s been such a blessing to us. Don’t ever underestimate your power to make my day by just sending a text saying you were thinking about my daughter or a letter in the mail or a post on my wall. I love to know that she is remembered by you. Second, I love to hear that her fighting spirit has inspired your own fighting spirit, in whatever way that looks like for you.

Because of this experience, I have been able to connect with other moms who have lost their own babies, whether that is from miscarriage, stillbirth or infant loss. We have been able to help each other through our grief by sharing our stories. Through talking about the babies we once had and will never forget. They stole a part of our hearts forever. No matter how short a life is lived, it is a life worth acknowledging. A life worth talking about. But talking can be hard. Sharing something so personal takes courage. Putting yourself out there and being vulnerable is scary. But its beautiful too. Healing is the hard work. Grieving well is not easy. To you who are grieving a loss of your own, to you, I say I’m sorry. I’m so, so sorry. I know the true heartwrenching pain you are going through. I also say be brave and tell your story. Share your experience. You never know who could benefit from it. You never know what impact you can have with your willingness to be honest. Show grace in the midst of heartache.

Yes, I’ve lost my most precious baby girl, but the story doesn’t end there. The story that is unraveling now has blown me away. I’m so glad that I chose to tell Anabelle’s story. I’m glad that my husband and I are grieving well and are able to look back and remember happy times, as well as the sad times. Mostly, I’m so glad that I got to be Anabelle’s mom. Anabelle, it’s safe to say that you not only were known and loved, but you have inspired bravery and shown grace to a multitude of people and we don’t even know the half of it. You have inspired me to live bravely. You have taught me to show grace and love to the ones I interact with. But don’t you worry girl, I still got plenty of feistiness in me too. Who did you think you got that from anyway?

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3 COMMENTS

  1. I lost my daughter, Lilah, when she was only three months old. It’s been 6 months now since she passed. I can relate to so much you shared in your touching story of your precious baby Anabelle. I also long for people to know that my daughter was here.. That she LIVED and was LOVED so very much.
    Lilah had a genetic recessive disease that no infant has ever survived. GRACILE syndrome is extremely rare and could not be detected through the genetic screening process I went through while I was pregnant. The doctors told us that she would not survive very long, a few weeks at best, so we brought her home, out of NICU, and she lived with us, and met her big brother, and heard the sounds of life in our family- on Hospice care.
    We now attend meetings at the Christi Center and I have met a lot of parents who are grieving the loss of a child. But I have yet to meet a mother who has suffered the loss of an infant.
    For the love of Lilah Jane and Anabelle. May God’s love bring you peace and comfort.

  2. So wonderful that you find so many positives! Anabelle was and continues to be a blessing.
    May today be filled with love and laughter.
    Hugs from one mom to another!

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