I scroll through social media and see postings from moms and dads with children who have hemophilia. I flashback to those early years when both Julian (1996) and Caeleb (2006) were diagnosed with severe hemophilia A. It was a lifetime ago. I am grateful that my oldest son, Julian, has never had complications from his bleeding disorder. His journey has been the “easy” one in the family, but Caeleb is a different story.

Caeleb’s second-grade year, in 2013, was spent in the hospital more than at home. Constant bleeding into a knee kept his limb from being able to extend. Blood filled the cavity of his right knee and caused excruciating pain and factor VIII could not be used. Caeleb’s inhibitor was extremely high and he developed an allergy to factor so to treat his recurring bleed, a bypassing product was used. It helped, but it took a long time to see results, and the minute we did, the bleeding began again. This was the cycle during that year.

Eventually, Caeleb could use a plasma-derived factor product and daily infusions helped him return to school and have a more “normal” life. But in 2018 everything changed. A new product came on the market and after some time passed, we switched to this revolutionary treatment that was changing the lives of people living with hemophilia and inhibitors. In the Spring of 2018, Caeleb began injecting (not infusing) Hemlibra. He now injects this medication twice a month. No more bleeding. No more hospitals. No more wheelchair. No more white, pale skin. And a phenomenal quality of life.

If you met him now, you would never imagine what he went through.

I sit here today, on Rare Disease Day, feeling like a different person. I look back on the years of hospitals and doctors, infusions and factor, physical therapy, PTSD, wheelchairs, and inhibitors, and feel so far removed from it all. Yes, that is a good thing. Sometimes it feels like it was all a dream.

For those of you raising children with a rare disease, I see you, Beloved. I know where you are. You are not alone.

If you know someone who is walking the Rare Disease journey, be present for them. Sit and listen. Don’t try to “fix” anything. You will never understand their journey, but if they know you are walking alongside them, holding their hand, that could make all the difference in the world.

Today I Am Thankful For:

1. Overcast days
2. Garden gloves
3. New notecards
4. Fabric to be cut
5. My sons