Today my son Tyler turns 22. It seems like only yesterday I was bringing him home from the hospital. I will never forget that day, especially when I received the shocking news that he had been born with severe Hemophilia B. What a long, strange trip it’s been dealing with Tyler’s bleeding disorder. I never knew I had the strength to face all the challenges we would encounter. I doubted myself and worried that I was in over my head; I feared that I might not be observant enough which could lead to dire consequences. Looking back now, I wish I could hug my younger self and tell her, “You’re doing great!” You just need to keep telling yourself, “I got this!” because you absolutely DO.
Over the years, my son consistently inspired me with his ability to keep smiling and making the best of some bad situations. One of my greatest fears was that he would be an angry, bitter adult, full of resentment. I know this seems dramatic, but I honestly would lay in bed at night worrying about this kind of stuff. I wish I had trusted more in my resilience and parental instinct. Thank goodness, Tyler keeps me laughing and constantly amazes me with his coping skills. No good can come from stressing about all the “what ifs”. I know that is easier said than done, especially for those newly diagnosed. But trust me, it does get easier with time.
Living through a pandemic has confirmed the notion that you cannot predict what the future will bring. (Well, except for my friends who hoarded home goods in their garages for years; I guess they predicted it.) I have learned to take things one day at a time and to appreciate each one. I have realized that what is most important is to educate myself and teach my child how to advocate for himself. This is something productive that I can do now rather than focusing on things outside of my control. After 22 years, I feel proud that Tyler is a happy, well-adjusted young man. And the best part is, he has received the greatest training to one day become my caregiver. Then I will get to say, “Can’t you just do it for me?”
Happy 22nd birthday to my sweet, amazing son Tyler. Thanks for always making me laugh when I needed it the most. I love you!
Coming soon…
-Fight for Your Right to Choose Your Own Product
-To Port or Not to Port
-Standing Up for Your Rights
-Helpful Hints Dealing with Health Insurance
Blogging about Bleeding Disorders 