I learned so much at the inhibitor summit I attended in New Mexico. Not only was my son Walter able to meet kids just like him, but I was able to meet parents dealing with the same issues as me. It felt good to know my husband and I weren’t alone. After this summit, we decided we will no longer miss anymore.
Its been one week and we’re still here! So when your a parent that has a child with hemophilia, and you have a long stay here are some tips:
– Ask your doctors if you can leave the floor with your child, usually you can
– Read kid friendly books on bleeding disorders
– ask for a volunteer to play with your child… You need a break don’t feel bad about that
– meditate or pray
Now first and foremost I love my son, and I’ve accepted his illness. However, with that being said I still get frustrated with what comes along with this illness. Sometimes I get mad when people complain about having to take off work because their child is sick. I honestly want to tell them be grateful your child has a simple sickness. Be grateful you don’t have to spend weeks in the hospital. Be grateful you never have to feel bad about not being able to sit at the hospital all day with your child because work is a necessity.
Sometimes when I’m at the hospital I look at other parents who are there months at a time. They help me stay encouraged because I could only imagine what they go through. Now the issue with Walters hemophilia is his inhibitor and random infections. A child with hemophilia and an inhibitor is a whole different level of treatment.
Now I know that the more I’m educated with his illness the easier it will probably be. Eventually, I want to speak at events for hemophilia and be a hemophilia advocate.