I get some pretty stunned responses when I tell family and friends that I am grateful for hemophilia. They can’t understand how it is possible that I can be thankful that my 9-year-old son, Thomas, has unexpected, ill-timed, and painful bleeds. How could anyone find good in dealing with a nonsensical insurance company? Obviously, I could do without the physical and mental anguish a chronic condition entails, but without hemophilia in my family’s life, we’d be much less blessed. In a season of thankfulness, I’m thankful for hemophilia and the bleeding disorders community it has brought me through the Hemophilia Federation of America.
I clearly remember when my husband and I heard the diagnosis that our newborn son had severe hemophilia A. A few days later, as the shock was wearing off and I cradled Thomas in my arms, I thought to myself, “This will either tear us apart or build us up. The choice is mine.” Our family immediately reached out to both the local and national bleeding disorders community for advice and support. Those contacts became even more vital a few short months later, when Thomas developed an inhibitor.
Because we attended a local chapter event when Thomas was only 6 weeks old, we were able to see children growing and thriving with hemophilia. Experienced parents were there to share their stories, offer advice, and to say, “I understand what you are feeling right now.” One moment stands out — the moment I knew could really handle this: I stood watching a gaggle of 5-6 year old boys run around, chasing each other, laughing and giggling during a fierce game of tag, as their parents watched from a distance–chatting about everything and nothing at all. I won’t lie — I tightened the straps on the Baby Bjorn and tucked Thomas a little closer to me, knowing that one day I’d have to loosen the reins and let him live.
Over the years, we have experienced many highs and many lows due to hemophilia, but even in our darkest days, we still try to take a minute to be grateful for all that we have. We remind ourselves that there are educational programs like Dads in Action, and that HFA keeps us well informed about what to keep an eye on legislatively through alerts and webinars. We thank our lucky stars for Helping Hands and other patient assistance programs. We see our peers bond through Blood Brotherhood and Blood Sisterhood. We know that as a community, our voice is heard. And what a community this is!The relationships I have come to depend on have been nurtured by attending HFA’s Symposiums and local chapter events. These connections and networking opportunities are instrumental in both mine and my son’s acceptance of his lifelong disorder. At the 2012 Symposium, Ben Turpen started off the meeting as the keynote speaker, and reminded us that you can conquer whatever adversities life throws at you – and that you can do it with grace, a smile and gratefulness. I sat in the most powerful mom’s group. In that room, we all shared a common, yet not-so-simple bond of mothering a child with a bleeding disorder. We immediately had a connection that could never be severed. The previous session had featured Jeanne White-Ginder, mother to Ryan White. She spoke of love and dignity, and as I waited to speak with her afterwards, I was filled with gratitude. Her willingness to share her son, in life and death, paved the way for a brighter future for my son.
At the HFA symposium, the atmosphere was electric and the sparks flew! Just as an electric current gets its power from a conductor, HFA is a conductor–providing energy and power to families through its programs and services.
But in this day and age, we don’t have to wait for the annual Symposium to network with one another. The use of social media, such as Facebook and Twitter, have given me instant access to my friends. These sites are a place to vent and find support, and I’ve found them to also be an effective platform to raise awareness and educate the general public about bleeding disorders. When I’m feeling down, I can always visit HFA’s website (http://hemophiliafed.org/) and view the “Voices and Stories” to see others share their inspirational histories and their promising futures. Sometimes you need to see and hear the voices of those people most precious to you, and having instant access to them helps tremendously.
It’s a constant battle to be on the winning side of the positives of a bleeding disorder, but when you look around and you see the benefits–love, acceptance, understanding and kindness– you can’t help but feel appreciative that hemophilia is what led to such a wonderful place of strength. Don’t flip the switch and be led into darkness. Choose to actively engage with HFA and be filled with gratitude and light!
My family’s advocacy work and participation in the community has led to powerful friendships and an endless stream of knowledge and information. The enrichment you gain is far more than you can ever give. I can honestly say that if we had chosen the path of darkness, our family would be struggling. I would have no clue how to help my son at school when he needs an Individual Education Plan (IEP) or 504, and I certainly couldn’t have taught him self-infusion on my own. Without my involvement in the community, I wouldn’t know how to cope with the sibling issues that arise for my girls, and no one would be gently reminding me to take care of myself–the caregiver and the carrier. I learned these techniques at Symposiums and other events and from the community that HFA helped to create.
The Hemophilia Federation of America is family. There is great empowerment in family and my appreciation for HFA, hemophilia, and my “bleeding” family. They are much more powerful than any physical and mental nuisance that the condition of hemophilia can throw at us. By applying a little gratitude to every infusion, every physical therapy appointment, and every connection I make, the condition of hemophilia weakens, and, as a family, we become stronger and brighter.
Sonji Wilkes was born and raised in North Carolina, where during high school, she developed an appreciation for volunteerism and community service. She graduated Magna Cum Laude with a BA in Behavioral Science from the Metropolitan State College of Denver in 2001. Sonji volunteers extensively in the bleeding disorders community and was selected as the 2006 National Hemophilia Foundation’s Volunteer of the Year. Sonji also has led her children’s school auction, raising over $225,000 in the last 3 years. Sonji, her husband Nathan, and three children: Nora (11), Thomas (9), and Natalie (6), currently reside in Colorado.