The Isolation We Experience Because of My Daughter's Rare Disease, SCID

You know that saying, “If you want to make God laugh, tell him your plans?” Well, I am laughing right along with Him! Boy, did I have plans. So many plans.

Any parent can tell you that life changes after having a child. It is a warning I heard all too often while pregnant, “your life is about to completely change.” Of course, I expected changes, but I was determined not to miss out on anything. Just because my husband and I were bringing a child into this world, I wasn’t going to let it stop me from our weekly hang outs and weekend dinners with friends, days at Disneyland, weekends away. Riley would just tag along — no big deal. I had it all planned out, we were going to have a  fun, adventurous life with our new baby girl.

No, I don’t really believe God is up there laughing at me for making those plans not knowing what I was about to be faced with. However, I do believe He allows us to experience trials and grief for a purpose, even if that purpose is never fully known or  fully understood by us.

Just two weeks after Riley’s birth, we received a call that no mother ever wants to hear. Her newborn screening came back flagged for something called Severe Combined Immunodeficiency (SCID –pronounced skid). With not much explanation and only a quick google search, I was told to bring her to the hospital immediately for emergency blood work and to be examined for any signs of infection. SCID is a rare genetic disease that leaves a child with no immune system, whatsoever. Something as simple as the common cold could be deadly. It forces you to live in isolation, in a sterile environment away from family and friends, hiding from the rest of the world and the germs lurking everywhere. A disease that is often fatal within a child’s first two years of life. Your only hope for saving your child’s life is a Bone Marrow Transplant or an experimental Stem Cell Transplant. Unbelievable, right? I know.

As a first-time mom, this news rocked my world — just like it would for any parent no matter how many children you already have. But there is something about becoming a first-time mom, you are already experiencing a mix of emotions, nervous but excited to explore the unknown world of parenting. Only now, your firstborn child has a life-threatening illness. You are no longer just learning how to care for a newborn, you are forced into a battle for your child’s life — no book, blog, or person can ever prepare you for that. Nobody plans to have a sick child. You see it happen to other families and it breaks your heart, but you don’t ever think it could happen to you. Until it does, and you quickly learn to never say never.

 

Being a first-time mom to a child with a life-threatening illness, I have had to grieve the loss of nearly every expectation I had of what it would be like becoming a mom. All of my plans flew out the window the moment I got that phone call. Instead of regular trips to Disneyland or the beach, it was regular trips to the hospital. Instead of meeting up with friends on Friday night, it was prepping multiple shots and medications to administer. Instead of calling my other first-time mom friends for a play date, I was calling doctors and insurance to try to get medications and treatments approved. Instead of that fun weekend away, it was weeks in a hospital room. Instead of planning the first birthday party I always dreamed of, it was planning for chemotherapy and a stem cell transplant. I have felt robbed of so much as a first-time mom and it has taken me a long time to come to terms with that. I have had many moments of weakness, sobbing in the shower, and crying out to God, asking him why and begging him to heal my child — since showering provides the only moments alone when I don’t have to be strong for anyone else. Rare disease, in general is isolating, SCID just takes that term way too literally.

I share this to tell a story of hope and encouragement. Because with all of the pain and heartache, there has been so much good, so many blessings and so much to be thankful for. Rare disease teaches you more about yourself, life and love than you ever hoped to know. It teaches you to rejoice in the smallest of things. All baby milestones are fun and exciting, but when you aren’t sure if you were ever going to be able to witness your child reach those milestones… let me tell you, I feel like I want to throw a party for every new thing she learns. Rare disease teaches you compassion and empathy. It pulls out a strength from within you that you never knew was there. It brings you a community of people walking the same path, you all wish you didn’t know each other, but you wouldn’t trade these newfound friendships for anything (shout out to my warrior mamas, y’all know who you are).

So maybe I didn’t get to experience all of her firsts the way I wanted to, but now we will have new firsts to plan and look forward to. I believe every thing we have been through will only make each of these moments so much sweeter than they ever would have been. I wouldn’t trade this journey for anything. Because of this rare disease that so rudely interrupted our lives, I have experienced deeper love, appreciation and joy. I have experience God’s love and faithfulness in ways I never thought possible and don’t know if I could ever put into words. Most of all, I am beyond blessed to say my daughter is alive. She is thriving. She is so full of life. Others aren’t able to say that about their child, and for that reason alone, I will never take a single day with her for granted.

Follow this journey on Life With Riley.

We want to hear your story. Become a Mighty contributor here.