The past six months have been hard. Like hemophilia was managing us instead of us managing hemophilia. I can’t remember the amount of times I sobbed out of frustration, fear and being powerless to help my son. We are still muddling through and each day is a battle. A battle where it seems like we take one step forward and two steps back.
However there are have been wonderfully fulfilling moments. Moments that make my heart burst and be still. Particularly watching the relationship between Logan and his little brother, Ryan, grow into something I could never have imagined.
Logan was our first baby and with him came hemophilia. We learned to parent right alongside parenting hemophilia. At times, it was a blessing; we did not have to parent a different way than we had previously. We just parented. We double diapered. We always had pillows around him when he was learning to sit up and the list all bleeding disorder parents know. Our parenting and rules just fell in line with our second son, a little boy without hemophilia, he didn’t get to climb the bookshelf just because he clotted. The rules are the rules, and many of those are dictated by hemophilia. And although we had the rules down we had no roadmap for having one with a bleeding disorder and one without. I did not grow up with hemophilia so I don’t know what dynamics would and could exist between the two of them.
I had expected the conversations about why Ryan did not have hemophilia or did not need factor and Logan did, and we have navigated those without too much difficulty. But I was overwhelmed with sweet mama moments when Ryan started to sit next to Logan and hold his hands when we did his port infusions. Ryan would take of off his shirt, settle in right next to Logan and there they would sit. Supporting Logan in a way I could not imagine a two-year could.
I have also watched as my two year cried for his brother while he stayed in the hospital for a hip bleed and a port replacement surgery followed by a port removal surgery. He misses him desperately when he is gone.
Yet, the moments of love and support between my boys shone through in the past month. Logan had a port replacement surgery in August. That particular procedure did not go as we would have liked and we were unable to use the port. Peripheral access has not gone as well as we would have hoped. It has been a struggle. Everyone has shed tears. But we have fought through to provide the best care for Logan, even when he does not want it. It has been during these times that Ryan would sit in our “big comfy chair” and play a game on our ipad while we infuse. And once we have a successful “poke” and Logan is holding very still so we do not blow the vein, Ryan scrambles over and sits next to him – hand on his arm telling him to “be still” and that “he is doing good” and that we are “almost done” and he helps us do the “3ml countdown.” Once the needle is out, Ryan wraps his arms around his big brother.
My heart soars. But more than that, this bleeding disorder and all its struggles is making my children empathic to others during their moments of pain and fear. I could try and teach my children empathy and I do. But no amount of abstract discussions or playground mishaps can soften my children’s heart in the way hemophilia has. And this is a life lesson worth all the tears.
Emily, her husband, Geoff, sons Logan and Ryan, and daughter, Payton, live in Minnesota.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.