by Hanukkah “Rea” Watson

Published: Lifelines for Health Fall/Winter 2020

March has always been a memorable month for me and my family. It was the month we welcomed our oldest son Benjamin into the world over fourteen years ago. A traumatic circumcision led us to our diagnosis that came just in the nick of time. Stuck on an island at an overseas military base with a scarce supply of factor eight was just enough to save his precious life from slipping away! As new hemophilia parents that were just grasping the reality of what it would truly mean to raise a newborn son with a bleeding disorder, we found hope in the arms of a welcoming hemophilia community as we returned to the United States. This crazy journey rocked us to our core with so many ups and downs. It was not long into Benjamin’s young life that he would end up developing an inhibitor to add to his severe hemophilia A diagnosis.

We had the courageous honor of doing it all over again, when our second son, Brandon, was diagnosed with severe hemophilia at birth. The NICU team quickly tested his cord blood after a very scary C-section birth. Brandon developed an inhibitor as a toddler- just as his brother had. They both have witnessed countless days in and out of the hospital; joint injuries, line infections, ridiculous amounts of school absences as well as over a dozen surgeries between the two of them. With the help of so many organizations, support groups, a loving family, supportive friends and an awesome medical team, they have both overcome so many trials. This year was going to be one that we truly cherished, with Benjamin wrapping up middle school and preparing to enter high school. Brandon was getting exciting about walking through the doors of his middle school for the first time. Their little brother was over the moon about meeting his kindergarten class.

Little did we know that March of 2020 would bring a pandemic resulting in our kids’ return to home earlier than we expected. They were home for the last few months of those last school years before transitioning to middle and high school. Monumental steps! Home for all of the summer. What were we going to do? Well, in all honesty, I am not sure we were motivated to do anything but sit around with the exception of a few family bike rides as we realized that our summer vacation plans would eventually be cancelled... We ended up doing what felt impossible on most days and that was, try our best to create some sense of normalcy. I’m sure everyone’s’ “normal” looked different.

Then, to our surprise (after waddling in self-pity, utter despair and BOREDOM), we got an email from nSpiration/ CHES’ After the Shock Inhibitor Family Camp. We had never attended because our calendar was normally so congested with vacation plans to see family out of state. We were always aware of the resources and programs, but unfortunately, were never able to clear our schedule... Yeah, that may need to change once this all passes over!

We signed up for the Virtual Family Camp and CampFire Events, and I am so glad that we did! We were given a schedule of a variety of virtual programs for family activities! I somehow got my teenager to take part and actually talk about his feelings from breaking a cup and putting it back together with golden materials... it was so beautifully broken! I didn’t know a cup could speak, be so inspiring and meaningful without even saying a word!

We were able to connect with other inhibitor families. Some days things were so crazy, I had to turn off my camera and just listen and on other days I was able to be even
more engaged, but it was camp, nonetheless. We enjoyed the singing, laughing, creating and science experimenting and for the first time since COVID-19 hit our state, we had something that felt about as normal as things have been. We even discovered how creative you can be with bleach when the whole entire United States decided that they, too, wanted to tie dye their t-shirts all of a sudden!

We are knee-deep into “what if’s” and have been for quite some time. We all hoped that we would be at least close to the pandemic’s end. Our state, New Mexico has not allowed most students to return back to school. We managed to celebrate the milestones with drive- thru parades and virtual meetings with teachers at our schools. Virtual reality!!! It is real, and we have all witnessed it. Nothing is like it was!

The one positive that we all may share in these times - cherishing moments like the ones we had at After the Shock; Virtual Inhibitor Family Camp. Cherish being bored, as much as going out for a bike ride with your kiddos. Cherish watching that movie for the third time! Drive on a scenic road until your heart is content! Log off for a few hours to stop “liking” and “hearting” for once.... Log on with some friends on a video call for a few hours and really talk. Make the most of every connection that you can make. Cherish the memorable days, weeks and months because connections make times like these much smoother to move through.