In His hands
Written by Honeliz Lopez
“Your daughter might not be compatible with life.”
“Your daughter has Bardet Biedl Syndrome.”
“Your daughter needs a kidney transplant.”
“Your son has six digits on each hand and foot.”
“Your son has Bardet Biedl Syndrome too.”
These are the words that we were told about our children, amongst many others, but these are the ones that stand out the most. Being a prayerful and faithful family, we took these words into prayer. Did that make it less heartbreaking? Not really, but we did find comfort in praying and knowing that God had our children and us. Even though I know He has my babies in His hands, these words echo constantly in my mind. It is quite a power struggle between God’s voice and the intrusive thoughts. Some days, the intrusive thoughts take hold, and I need to dig myself out of the mental hole I am in, but God ultimately dives in and brings me out.
Last summer was probably the most trying summer of my life. Our daughter Heidi needed a new kidney. She had been on the transplant list for about three months before we got the call at midnight. The week prior we were told to start preparing for dialysis, and here we were six days later hopping on a plane from Jacksonville, Florida to Rochester, Minnesota. What should have been a four-day hospital stay turned into 10 days. Little did we know— we would be spending almost four months in Rochester. In that time, we explored different parts of Minnesota, all while doing kidney biopsies, IV antibiotics and numerous hospital stays. We were also without our little boy Samuel who stayed home so we could focus on Heidi. During that time of uncertainty, I needed something to do. I couldn’t work—my job focuses on being on the phone and doctor’s appointments were popping up all of a sudden as well as hospital stays. I decided to start writing, something I had done since middle school but never shared with anyone.
I started to write about Heidi’s life, except instead of being nine years old, she was 29. I wanted to give her a future, a future that included falling in love and having a job and still being her sassy little self. Picturing my baby girl as an adult was quite amazing, and that is how Strawberry Falls came to be. Strawberry Falls is a fictional town set in Minnesota near Rochester. I was inspired by my surroundings of farms, fruits, and the amazing people of Minnesota. When I started to write about Heidi’s adult life, I started to see the bigger picture. I was seeing what God has in store for us, but will it happen the way that I wrote it? Most likely not, but it’s nice to dream, and it’s nice to give myself hope that she does have a future, and that love can be in her future.
Bardet Biedl Syndrome (BBS) has a lot of complexities that most of us don’t understand, and everyone is different. Heidi and Samuel couldn’t be more different in their medical complications, but they are equally cuddly, affectionate, vocal (even without words), and all together amazing kids.
As I mentioned above, my job consists of being on the phone. But it’s a lot more than that, I am one of the research coordinators for the CRIBBS registry at the Marshfield Clinic in Marshfield, Wisconsin. Not being able to work and interact with my fellow BBS families has been difficult. I miss exchanging stories about our kids, and I miss speaking with the adults with BBS, because they also give me hope for a future for my babies. The BBS community as a whole is nothing short of amazing. The families, the physicians, the researchers and those who support all of us, are fabulous.
When I started this journey, I didn’t know what would come of it. But it inspired me to continue writing. I wrote a second book, also set in Strawberry Falls and that book is inspired by my son Samuel. He is currently three years old and obsessed with firetrucks, hence the main male character being a firefighter. The character doesn’t have BBS, but it is mentioned throughout the book and the fears that a lot of people face when thinking of rare genetic conditions.
I hope this article finds you at the right time, when you need it the most. When you need a little bit of hope and need something to give you a pep in your step. Pick up a pen and paper and start writing. And if you’re not a writer, another hobby perhaps. We don’t have a lot of time as special needs parents, but we do need to take time for ourselves. We can’t pour from an empty cup, and if we are empty what are we giving our children?
God bless you all, we are in this together.
Honeliz
To learn more about BBS and the unmet needs, you can read our RARE Revolution, RARE Report here: https://bit.ly/BBSImpactReport
