I am a true believer in the saying, “knowledge is power.” However, I also believe that the knowledge you attain must come from the correct source and at the right time. I have learned that this is even more true when it comes to hemophilia and motherhood. It is for this very reason that I have come to call “Infusing Love” one of my personal blessings. The information and insights shared in this blog come from moms who know and I can relate to, always.
Every Thursday morning I take some time to read the weekly post from that Wednesday. Often times, I cry. I cry because I have been exactly where some of these moms have been or because my heart hurts for the struggles their sweet and resilient children have had to endure. I also print each blog post and save them for Logan to read one day, and for me to reread when I need to remember that life will go on or that other moms have also experienced what we are going through.
It is amazing how the posts can have such an impact on me that I often remember them weeks and, even, months later.
As we say goodbye to 2014, and all the joys and struggles the year has brought, I want to walk back through the second year of “Infusing Love” and remind myself, and all of us, of the poignant and meaningful things that have been written from which all of us can learn.
I was reminded by Tracy that beyond all the craziness of hemophilia that:
“Most importantly, you have days when you realize that thankfulness in the bleeding disorders community includes that standard ‘set’ of items we’re all grateful for – family and friends.”
Or when Jen taught me the understanding that:
“Family really is everything – we share so much in that genetic code: what we lack in clotting ability, we make up for in understanding what each faces in living with a bleeding disorder.”
I cried when Cazandra showed us that she is:
“Determined one way or another to make sure my son gets his medication. If it means holding him down and letting him cry, scream and fight; I will do whatever I can to make sure he gets his infusion. Knowing that factor bypassing agents are his lifeline, I find myself putting a wall around my emotions for my son’s well-being. Some people would think that I must be hard and cold, even unfeeling. But the truth is that when you have to weigh what is best for your child against not wanting to upset him, what is best always wins.”
I came to understand that bleeding disorders affect us each differently and it is not easy, especially for Kari [L1] and how she:
“Sometimes I feel like people don’t understand that I’m fighting for her life each day. Each and every moment I spend with her, I’m trying to prevent her from getting an injury. On most days this leaves me feeling emotionally and physically exhausted. I feel like a lot of people will never understand the daily rituals that we’ve had to take to keep Scarlett safe. The everyday worry, that I assume all parents go through, is escalated to a level nobody could imagine when you are trying to prevent your child from getting hurt from everyday life experiences.”
I did not feel alone in trying to parent with other people thinking certain things when I read Sonji’s words:
“I don’t expect others to understand what it’s like raising a child with hemophilia. I don’t expect them to know what it’s like, constantly living with your own cell phone attached at your hip because you never know when you’ll get a call from school or friend that your child is bleeding and in pain. I don’t expect people to understand that I sometimes have to stop everything at the drop of a hat to run off and apply skills in crisis management that I didn’t know I possessed until I had a child with hemophilia. I don’t expect any of that. But I do expect a little leeway from people and would appreciate a little less judgment over the decisions we make as a family to help mitigate the unpredictability of this condition, and the actions we take to make our lives a little easier.”
I understood Destinee trying to protect her daughter as she:
“Decided against an activity out of pure selfishness because we don’t want to inconvenience the whole family on a particular day, and do whatever possible to avoid a trip to the emergency room. We choose to say, “No” to going for a bike ride with the other kids at the party or to jumping on the trampoline. The journey to keep my daughters safe, both mentally and physically, has come with some bumps and bends in the road, but I feel like there’s also a lesson for them to learn by hearing “No.” There’s no risk of getting hurt from that”.
Kelly showed me that you can balance safety with activity, by sharing:
“The extracurricular activities are a great escape from the everyday dealings of living with a bleeding disorder. Whether it is a sport, music or a club activity, get out and be involved – strike a balance of fun in your life!”
Kimberly reminded me that I need to be fostering a sense of advocacy in my boys with this wisdom:
“That unrelenting demand for answers drives me crazy at home sometimes, but darned if it isn’t exactly what I dream for him and his other bleeding disorder buddies to be when they reach their own age of consent. Am I still worried about the decisions he will be faced with in the future? You bet. Am I going to keep the dialog open about being smart, asking questions and teaching him about owning his own body? Absolutely. Do I feel a bit more confident that he’s going to make well thought out, informed decisions? Sure do!”
I also appreciated hearing that we need to remember ourselves, as moms, too. It was sweet to read Maryann remind us that we should be:
“Unafraid to look silly if it helps someone who struggles with the emotional and physical issues of hemophilia. Sometimes struggles are the very thing I need to grow.”
It was uplifting to have Lovee teach me that:
“Self-care should not only be what we teach our children with a bleeding disorder. We have to practice self-care for ourselves. Our children learn more from watching us anyway.”
And I could not have summed up my thoughts or this year any better than when Samantha implored us with her wise advice:
“To give yourself grace in making decisions, give yourself confidence and a voice to talk about your choices openly, and give kindness and respect to others’ choices. If you are seeking information, seek it wisely.”
You have each spoken so beautifully to me as a mom, as a caregiver, as a person, and most importantly as a woman. It is an honor to share with you and, so often, to see my past, present, and possible future come to life before me in the lives of others. Thank you does not begin to cover what I would love to say to each of you, and I cannot wait for the next quiet moment on a Thursday morning to read about your lives and your strong, courageous children.
