As you all know Anthony has a clotting disorder called hemophilia. Don’t be sucked into the myths though, each paper cut does not look like Texas Chainsaw Massacre, he just bleeds longer than your norm. I treat him like a normal little boy; he came with no bubble wrap for the random spurts of jumping off his bed to see if he can land on the dresser. >.< Recently he’s started thinking about what he wants to be when he grows up. For the most part these interests include becoming inanimate objects, such as; a train (a steamy not a diesel), a monster truck, a motor cycle..you get the picture. He also thinks he might enjoy being a firefighter. My response to this? Go for it! Would I prefer he were a doctor? Yes! But how could I ever tell someone they can’t follow their dreams ‘just because.’ Who am I to say he can’t be a firefighter? I figure this is all pretty simple, instead of stressing I’m just going to let him keep dreaming as long as he can and when he gets older either he’ll know his limits enough to stay away from something too dangerous for him or there will be a cure by then. And between now and then if he decides he’s going to play football in highschool I’ll go buy a foam finger and hope like any other mom he doesn’t break his arm.
This week has been a rough one. Anthony had his second ever joint bleed. The first time was nearly 2 years ago and he bled into his ankle, no big deal 8 hour ER stay on Halloween and he was all fixed up. Sunday I picked him up from a cousin’s house and he was fine, playing, begging to stay. After the 2 hour drive however he was in tears and unable to move his arm completely. Forget about letting me touch it to measure or even check for bruising. After a lot of crying from him and some frustration from me I was able to get a look and see nothing. No bruises and it didn’t look swollen to me, but you can’t really tell these things without measuring. I spoke with a oncall hematologist about his arm and was told to ice it, give him acetaminophen and if he was still hurting in an hour and a half call back on my way to the ER. We were fine for the rest of the night after his pain reliever kicked in and I didn’t worry about it. The next morning however he was distraught again over his arm and unwilling to even bend it to get dressed. This time I spoke to a nurse on the phone, explained the situation and took measurements. Turned out that one elbow was a full inch and a half bigger than the other. definitely a joint bleed. And so began the phone calls. Do we take him to the doctor? Can we get a home health nurse to our house to infuse him? Do we need to go to the ER? From 9am until 3pm I waited while my health care professionals called each other, made arrangements and finally decided they couldn’t help me and that it was time to go to the ER. This was our 15th ER visit since Anthony was born for a factor infusion. I can’t believe that the numbers have gotten so high in just 3 years but there it is 15 infusions in the ER and probably more than that done in a clinic. Tuesday morning the phone calls began again. The measuring began again. The searching for a solution began again. ER? Home health nurse? Clinic? His elbows still had an inch and a half difference in size and he couldn’t bend his right arm and so he still needed factor again. At nearly 6pm on Tuesday night Anthony had his first infusion done in the home by a nurse. I haven’t seen him scream like that in a long time and I have certainly never earned that look of betrayal from him before. We came on to his home turf and violated his safe place with needles and medicine. He wanted nothing to do with me when we were done. I came to him, sat him on my lap, told him how proud I was to have such a strong and brave boy and he told me to “Leave me alone right now.” In those moments he looked a bit older. His seriousness, not the words he spoke, but the look of someone who is just tired of their lot in life was like a knife to the heart for me. And the nurse said to me, “Some homes I cry when I leave. This is not one. I won’t cry when I leave here today.” I cried though.