Hemophilia became part of our world on April 28, 2014 when I opened our agency’s waiting child page and saw our son’s profile. I had heard of this rare bleeding disorder before, but I really had no idea what it meant for day to day life.
Actually, I did not know any medical conditions would be part of our adoption. My husband and I had been in the adoption process for a few months. We already had four teenagers at home and were hoping to adopt a healthy boy. Adding severe Hemophilia A to the mix was a change of course. We set about learning what it would mean for our family.
Hemophilia in our world means visits to the local Hemophilia Treatment Center. When we came home in December 2014, these visits occurred 2-3x/week. Things have calmed down, and we now check in with the HTC every six weeks.
Hemophilia in our world meant a surgery to implant a venous port in our son’s chest. Not every child with hemophilia will need a port. Many manage the infusions through peripheral veins (similar to a blood draw one may get for lab work), but our son’s veins were not cooperating.
Hemophilia in our world means several thousand dollars worth of medication sitting in our refrigerator next to last night’s leftovers, and port infusion supplies tucked away in an armoire. We receive a shipment of medication and supplies once a month. Thankfully, this is covered by our health insurance as well as a non-income based assistance program from the medication manufacturer.
Hemophilia in our world means budgeting an extra 15 minutes every other morning to give the infusion. Some families go to the HTC for infusions. Many have a nurse come to their home to give them. Others learn over time to give them independently. We fall into the last category. We found hemophilia was much easier to manage in our world when we could be more in charge. Our HTC team coached us and had us doing the infusions on our own within a few weeks.
Hemophilia in our world means taking a little extra time and thought to prepare for life. We toss in a small kit of supplies and medicine just in case our son takes a hard hit or develops a bleed. It’s now just part of the routine. We keep a lookout for any signs or symptoms of a bleed that may indicate he needs more medication. So far, with the prophylactic treatment, our son has not had any.
Hemophilia in our world means we had a toddler who knew how to wrap a tourniquet around his arm and to look for a good vein for an infusion. It meant after his port surgery that all of his stuffed animals got a port too and now regularly get their infusions. It means our three year old knows needles, syringes, and words like Factor and heparin.
But hemophilia in our world means something else. It means that our son Kai-Liang is part of our world. And Kai-Liang in our world leads to all sorts of amazing things. It means working through every step of the adoption process until I find myself standing in a hotel lobby in China shaking because I just caught a glimpse of my son for the first time.
Kai-Liang in our world means a front row seat to witness a little boy leave behind everything familiar and trust strangers and embrace a new world. It means rocking a screaming toddler who woke up from a bad dream. It means witnessing a child become a son and a little brother and know the love of a father and mother and four older siblings who are crazy about him. It means honoring his first family and culture and those who cared for him as a baby.
Kai-Liang in our world means learning just how busy one little boy can be. It means parks and hiking and swimming and story times. It means play dates and preschool and birthday parties. It means a living room covered in trains and building blocks and cars. It means bath time and footy pajamas and bedtime stories and songs and goodnight kisses.
Kai-Liang means our world is filled with the non-stop noise of a little boy getting to play actively for the first time ever with no limitations or restrictions from his hemophilia (because the medication is expensive and may be difficult to obtain in China, children with hemophilia are restricted in their activities). It means waking up early, oh so early, to the sound our three year old asking, “Kai-Liang go-go-go?” because he is ready to embrace everything life has to offer, and why sit at home when there’s a great big world out there to explore?
So yes, we learned hemophilia would change our life, but not nearly as much as loving this little boy has!
National Hemophilia Foundation
No Hands But Ours
Hemophilia Foundation of America
= guest post by Scout Christiansen