World Hemophilia Day April 17

This post is dedicated to my hemophilia friends new and newer. I am thankful to be a mom living in a country where in this day and age hemophilia can be treated in a way that is safe and predictable. WE are in control of this disorder. It does not control us. Our children are able to live long full lives where they are not ostracized for being different or looked at as sickly. Although treatment is expensive we are fortunate to have measures in place that let all children with hemophilia get treatement. No hemophilia child will have to suffer or become infected with other life threatening diseases. As families dealing with hemophilia, we have good days and bad days but in the end we will not be given more than we can handle. World Hemophilia Day should not only be about awareness, but also be about celebrating how lucky we are that we CAN manage this! Cheers!

What is normal?

William is our second son. Our first son is unaffected but also quite unique. When the time came for him to go head down in the womb, I felt him do a complete sommersault. While pregnant I always said that if he is as active out of the womb as in I was going to be in trouble! I am. He did everything ahead of schedule. I never worried if he was "normal" or on track in his development. In fact I couldn't keep up with the "baby's first year" books because he'd already done it by the time the month came around. He crawled and pulled to standing at 6 months and walked at 9. He talked at 12 months and was negotiating at 18 months. I always thought he was different than the other babies his age but never wondered if he was "abnormal." I was just trying to keep up. His personality matches his development. He is now 3. He never had stranger anxiety and is pretty much an ambassador for Friendly. He talks to anyone who will listen and will question, argue, or negotiate any chance he gets. People who meet Jack rarely forget him. You can't help liking him. (Unless your his mom and are tired.) He is challenging, spirited, precocious, and "active-alert." You get the picture. When I was pregnant with our second baby (cause we weren't busy enough with the first!) we really, in all honesty, wanted a girl but not for the usual reasons. Jack is such a big personality we thought being his little brother was just going to suck! Who could keep up with him? And we couldn't imagine having another one like him! So when the doctor told us it's another boy we were a little worried. Well, who knew we'd have to boys unique in their own ways. It will be 1 year in May when we found out our little one, Will, (who was 5 months old at the time) had severe Hemophilia A factor viii deficient. This means his blood can't clot. It also means he looks like an abuse victim lots of time because, as we tell our 3 year old, "Will has hemophilia and bruises easily." Will is now 15 months old and is cute as a button. His little personality is sweet, silly, and snuggly. He's also curious and ALL boy. He loves to climb, explore, throw balls, run. You name it, he'll do it! So what is normal? In our house normal means having an overactive brainiac and a physical, athletic, risk taking hemophliac in the house. Normal is what we make it. With Jack normal means explaining why it's not okay to unscrew the hinges on the bedroom door. With Will normal is heading to childrens hospital to be infused with factor after getting a head bonk. This might not be normal for other families but it's just a usual everday at our house!