Milestones

Throughout this journey of being a mom to a little boy born with a bleeding disorder we have overcome so many milestones. Whether they were little ones or big ones they were all leading up to this… this monumental milestone. This game changer milestone. Hayden learning how to self-infuse. For those of you unfamiliar with Hemophilia – it is a severe bleeding disorder. Hayden is missing a protein in his blood that helps him clot. This doesn’t mean he bleeds faster then me and you – it just means he bleeds longer. Where things get scary aren’t for the bleeds that we  can see – like skinned knees and cut elbows. It is the bleeds that we don’t see – the ones we live in fear of missing. Those type of bleeds can fill a mamas heart with so much fear it can feel hard to breathe. Brain bleeds, stomach bleeds and joint bleeds can all do irrepriable damage. We are so fortunate to live in a time where we can do our best to try to prevent these bleeds simply by giving Hayden the protein his blood needs to clot. Sounds easy enough… and it would be if it was a pill, But it is not…..it is through his vein and it is done 3 to 4 times a week. Sounds pretty tough doesn’t it… well trust me ….it is . This isn’t something that he just gets used to. He doesn’t like it – it hurts.  I used to try and make myself feel better when he was younger by trivilizing my fear by taking away his fear. I would say “It just sounds scary to us because we can’t imagine having to do this – but he will be ok because this is the only life he knows” – That made me feel better…. I thought he would just get used to it. I was wrong. This has been harder for him and for us – harder then I ever imagined. For his first 6 years of his life he had a port placed in his chest – because his veins were just too small to access. 3 times a week we had to stick that port because it was supposed to be easier for us – BUT it wasn’t easier for us. His port was a sensitive spot – maybe from being stuck so many times- But everytime we had to stick him. I had to hold him down while my husbands firm hand held onto that port and pushed a needle through the skin that had grown rough and callussed from so many sticks. Everytime he screamed, my tears would fall onto his hair while I pinned his arms back so that he wouldn’t touch the “sterile field”.   If he even sneezed or coughed near that sterile field he could immediately contaminate it and  get a blood infection which can be very dangerous. I will never forget those times and how, more then once, I would say, “how on earth will we ever get to a place where he will actually infuse himself” – It seemed like a scary far away land that I never wanted to go to. Well we are here… and it isn’t a scary far away land anymore – it has become more like our moutain top. A place that we have traveled as a family to get to . Though there have been peaks and valleys to trudge through – we made it to the top. We navigated our way through so many scary times – to get to this place and now that we are here… I can’t help but want to scream from our mountain top…. “HE DID IT”… but more importantly, as a family … “WE DID IT”. I was hesitant to take any photos because I didn’t want the noise of the shutter click  to mess with his concentration – but I did want to document something – so that someday when he is Big – he will realize just how small he was when he became the bravest boy I know.
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