Jan 26, 2017
As a mother, nothing can prepare you for moments of darkness. When you have a baby, you pray for all good things… all good moments. You expect light. One thing our youngest son Wyatt has taught us is that, despite all dark moments, light will always prevail.
When Wyatt was born, I immediately knew something was wrong. I could tell by the baffled look on my husband’s face. My amazing doctor seemed briefly speechless and that scared me. My eyes wandered around the hospital room frantically for another set of eyes that would silently assure me everything was okay. I saw many eyes, but all of them looked stunned.
Finally, they lifted up our son and I could see them: the spots. They were dark red marks and they were everywhere. They looked large and thick. What was all over his body? What were all those blisters from? In the 20+ years my doctor had been delivering babies, she had never seen anything like this. I had never seen anything like this. I was terrified. My whole being shuddered and the anxiety about the unknown kicked in. It was dark.
Waiver signed for Wyatt to be photographed and reviewed by an offsite specialist: check. Waiver signed for an ambulance transfer to Lucile Packard Children’s Hospital: check. Waiver signed for myself to get out of El Camino Los Gatos Hospital less than 24 hours after giving birth: check. Baby moved to Lucile Packard: check. Wyatt and I quarantined at the new hospital: check. Being scared to the core about what the future was for our sweet Wyatt: Big. Huge. Check.
The darkness continued and the waiting game extended. The dark cloud of the unknown continued to hover over us as we waited desperately for answers. Days passed. Tests happened. Still, no answers. Still darkness.
Finally, a diagnosis: Diffuse Cutaneous Mastocytosis (DCM). Light. Seriously though, what does DCM mean?
For us, DCM means Wyatt’s body produces too many mast cells that are easily activated by different triggers, such as friction or sunlight. It meant Wyatt’s skin would blister, have thickness, and a “peau d’orange” appearance.
Wyatt’s disease was very confusing in the beginning and there are still components about his mastocytosis that bewilder me. The Mastocytosis Society was the only genuine resource available to our family after Wyatt was diagnosed. Our entire family appreciates the work they do and support they’ve provided.
Wyatt is quite a warrior and has been through an awful lot for a one-year-old. We’ve been through the scabbing, the blisters, the coughing up blood, the countless doctor’s visits, and the itching. There have been so many WYATT WARRIORS fighting right alongside us from the very beginning and it has truly been a journey bursting with moments full of grace.
I know that all children face difficult moments and I know Wyatt will have some especially challenging ones in his future. He looks different and his body does things for reasons that we don’t understand. That’s how God made him and, although I will likely never know why in this lifetime, I will fight hard to help mommies and daddies like us have more answers in the future.
Although we don’t know exactly what the future will hold, we know Wyatt’s future is full of WYATT WARRIORS! My ultimate dream is that our unanswered questions will be resolved. We hope for understanding and won’t stop fighting until we know more about this rare disease.
Wyatt is truly such a light in my heart and in the hearts of so many others. Thank you for being a WYATT WARRIOR and thank you for bringing the fire that we need to make a difference for all children with pediatric mastocytosis.
Ways you can help The Mastocytosis Society on behalf of Wyatt:
- Buy A Shirt: https://www.booster.com/wyattwarrior
- Buy Hair Ties: http://www.thelittleladybugaccessories.com/collections/wyatt-warrior
- Make a Donation: https://tms.dntly.com/campaign/wyatt-warrior#/
- View Wyatt’s video and share it on social media to help raise awareness: https://youtu.be/h-Hnqwy-PqA