My non-hemophilia mom friends have often say to me, “I just don’t know how you do it. I just can’t imagine raising a child with hemophilia.” I normally reply with, “my son with hemophilia is my baby, and I’ll do anything for him.”
Earlier this summer, this very conversation played out between myself and HFA Staffer, Wendy Owens. Wendy doesn’t have a child with hemophilia, but we had a great conversation that day about the things she sees hemophilia moms going through, and sometimes struggling with.
“While I don’t understand what you ladies go through, I see it and I respect it.” – Wendy
I asked Wendy to guest write a blog for “Infusing Love;” I think it’s important that we, as hemo moms, know that while we are the mama bears, the warriors, our non-bleeding disorders friends do see our highs and lows. Sure, they may not always understand, but there’s plenty of other women who join us in the same sisterhood of motherhood and who know that any mom – hemophilia or not – will do just about anything and everything for their children.
-Sonji Wilkes, HFA program coordinator,Â hemophiliaÂ mom
I am not like you.
I am the mother of four sons…none of whom have hemophilia or a bleeding disorder or any other disorder or chronic disease. I count myself lucky. I, like many people, had only heard of hemophilia in history class when studying 19th century royalty. It wasn’t until I found and responded to a Craigslist posting for an Advocacy Coordinator position at the New England Hemophilia Association (NEHA) that hemophilia came to mean more to me than just a history lesson.
I got the job. Two very strong hemophilia moms interviewed me, sharing stories about their sons and the challenges they faced. Both of these moms told me, almost warned me, that once you become part of the bleeding disorders community, you would always be a part of it. When I first heard them I didn’t understand the full measure of their meaning; I was on the outside looking in. I have heard these words echoed many times since.
Because I am a mom, and was one at the time I joined NEHA, I saw life through a mom’s eye. My first couple of months on the job were focused on legislation, learning about the community and how NEHA served it, and the roles of pharma, homecare, and specialty pharmacies in the lives of community. All pretty surface stuff, all very business. It wasn’t until I went to Family Camp that I learned how different being a hemo mom (and dad) is from my everyday existence as a mom of kids without a chronic disease. Since then I have learned more about bleeding disorders, but I have experienced none of it firsthand. I am not like you and here are just a few places where I see the vast spaces in between my experience and yours:
- Needles – These may be part of your everyday life but not mine. Four months into my new job, I was the unofficial camp photographer on top of a list of other duties. I was asked to take pictures of the younger boys learning how to self-infuse. I had no clue what this meant. That was not in my purview and the mom sitting on the porch, shaking with nerves, who was asking me to please take a video of her 8-year-old son sticking himself with a needle wasn’t either. In my mind, I had entered another world. I remember asking her if she was serious. Yes, she was. Deadly serious. So I strolled into the infusion class where bigger boys were coaching little boys in how to insert a needle in their vein. Right. I remember taking the pictures and none of the boys or the nurses batting an eye. I also remember the nurses sitting back against the wall letting the big boys talk the little boys through the stick. “I know it is tough but I did it when I was your age, you can do it, too,” a big boy would say. The little boys blushed with nervousness. I took pictures feeling like I was invading on an ancient right. I thought of my boys. What if this was their normal? What if I was the mom on the porch with other parents around waiting for the results of the “big stick?” The love in that room between little and big was remarkable. It made it feel right. The tension was broke when I leaned forward with my arm on the table for awhile and a 6-year-old said to me, “You have great veins.” I did my first stick last year because I felt the need to understand what it was like. A proud moment but I did it only once. My brain fought with itself, one side warning, “What are you thinking, this is going to hurt.’ The other side saying,: ‘Shut up. I need to know what they go through. I need to try to understand to do my job.
- Infusing Babies and Ports – I am humbled by the parents who watch someone infuse or infuse their baby themselves. I do not envy anyone this task. I wish it could just go away. I’ve learned that a port makes it – dare I say – easier, but that comes with the risk of infection and other issues related to having a piece of metal implanted in your chest. That the port makes it, dare I say easier, I really don’t know because along with the port comes the potential for infection and other issues. I hear, I see, I truly sympathize but I can’t genuinely relate. My heart aches at these things.
- Medicine in the Fridge, Needles in the Closet – Nope, not at my house. Well, occasionally we have had antibiotics in our fridge, but a closet dedicated to ancillary items for infusion, nope. As for cold storing medication, I can only imagine the conversation: “Hey, could you grab the mayo?” “Where is it?” “Right next to the factor.”
- Bruises and Bleed – My grandmother used to say I bruised like a peach but I don’t think she saw how hard I played to get those bruises. Bruised elbows and skinned knees were chalked up to play – no one ever suspected child abuse. I’ve never had to deal with strangers looking suspiciously at me because of my child’s black eye or cranial bruise. No one ever threatened me with calling social services. I’ve never had to defend myself and tell people about my child’s chronic disorder that causes extensive bruising. No, I do not have the dual burden of caring for a child who bruises like a sweet, ripen peach while fending off venomous stares of the unenlightened.
- Boys – Boys want to run, play, jump, wrestle, crash into things to test their strength. At least mine do, all the time. The first bleeding disorders event to which I took one of my sons was a Snowshoe Walk in Vermont. I warned him at seven years old to take it easy with his play since I didn’t know which kids had a bleeding disorder and rough play is not a good idea. Naturally, despite my son’s shy demeanor, the first kid he hits it off with has severe hemophilia and proceeds to start wrestling with him. I stood agog but the kid’s mom just sighed, smiled, and kept talking. What? At a later time, I spoke to her and other moms about this; they laughed and said, like anything, you pick your battles.
- The Tooth Fairy – This was a “duh” moment for me. I was at a conference when a mom casually said to me that they were on tooth loss watch. Oh, how exciting, I said. She smiled at me like you’re sweet but clueless. Her look was right; I had no clue despite having been “part of the community” for two years that the loss of a tooth could require an extra infusion. A “duh” moment because it made sense once she explained it to me.
- Vaccinations – This is the sum total of my needle experience with my children. The nurse asks me to sign the consent form to give my child a shot. I hold my baby tightly to get it done. There is a prick, some tears, a confused look of why are you letting this person hurt me or, really, we are doing this again? Then we’re all done. The sheet I take home says there may be some swelling at the injection site and a mild fever in a few kids. I never wonder is this going to cause a bleed. I never think, oh yeah, vaccinations tomorrow, better factor up. By my third child I stopped getting Band-Aids to cover the shot site all together because with a bit of pressure the bleeding stopped. The darn Band-Aids hurt more coming off than the shot itself. The idea of sticking yet another needle in my child either before or after receiving life-saving vaccines is anathema to me.
- Pain – My 10 year old accidentally stapled his thumb the other day and got himself good. My sympathy was a bit short lived because then the lesson kicked in – now you know why we tell you not to mess with the stapler. Each time one of my boys gets hurts, I want to take the pain on me because I’m thinking ‘give it to me I can handle it.’ I know it is impossible but, still, the gut reaction is to spare them. I am not sure how you, parents of children with bleeding disorders, watch your child in pain, a pain way beyond a hairline fracture or scrape or a staple. Is it strength? Love? No choice? I see you. You put on a brave face but I wonder if you’re losing just a bit of yourself each time you have to face what you can’t control, what you can’t take on yourself.
- Inhibitors – This is a latent fear I wish on no one. The reality of it happening I wish even less. To me, this is real fear. This is the compounding factor of all of the above. I don’t have to face this fear. I don’t want to.
- The Past – I learned from the HFA History Room at the 2014 Symposium a history of families, of the bleeding disorders family. I spoke to moms who lost sons and husbands and uncles and fathers to a hidden threat of contaminated blood, one from which they did not know to protect their children or family members. I spoke to moms who lost their sons in the era before contaminated blood but also before recombinant factor. My heart broke at their stories and it made me want to hold my boys tighter.
So here I am, four years later after taking that job with NEHA writing about being a non-hemo mom because in this community that is what I am. I am a mom and I share many typical mom experiences with my hemo-mom friends. What I don’t share are the experiences with the condition and how it impacts a child, the carrier, the dad, and the siblings. I will never know what your life is like and you won’t know mine.
This is a community in which you are lauded and embraced for the good works you strive to do on its behalf. But when you have not been struck dumb and overwhelmed by a doctor telling you that your beautiful new baby has hemophilia or your teenage daughter has von Willebrands and her periods may be so heavy or childbirth so dangerous she could die, you don’t fit in. Don’t kid yourself. This is a wonderful community who supports one another and can communicate their mutual experiences with a look. Working with this community has made me a better person, advocate, mother, and friend because it has shown me the true meaning of strength and that is humbling. But I am not like you. I remain an observer but an advocate and supporter, always.
Wendy is the CHOICE Project Principal Investigator/Project Manager for HFA.
*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