Moms need a safe place to land sometimes.
With that in mind, HFA is launching a blog dedicated to all things mom! In this safe spot, moms of a child with a bleeding disorder will be able to read stories and draw inspiration from like-minded (and similarly crazed) moms like themselves.
In recent years, moms of a child with a bleeding disorder have begun turning to online sources of friendship and camaraderie. Moms are looking for a quick place to share and see reflections of themselves – and online friendships have blossomed! HFA hopes that this blog will be an honest look into the lives of moms and families with bleeding disorders. By sharing these insights, we can educate one another within our own bleeding community and teach our friends and family outside of the bleeding world that it’s not all bruises and bleeds.
In the coming months, we’ll be adding more moms to this blog and look forward to having a conversation each week!
Keep Calm & Use Frozen Hash Browns
Until I had children, I didn’t think of myself as a particularly patient person. I had little tolerance for anything that involved waiting around for other people – “I’m a busy woman, get out of my way so I can go conquer the world,” was my mindset. I was set on doing things my way and on my own timetable. Hemophilia came along and certainly set me straight about a few things.
Sitting in a doctor’s office waiting on an appointment doesn’t have to be wasted or frustrated time. I’ve had some interesting conversations with my children, other patients and even with some of our clinicians in our HTC waiting area. I’ve learned to be patient with my doctors when they tell me, “We just don’t know,” when research is moving more slowly than I’d like. I’ve come to see teaching hematology residents about hemophilia as an opportunity rather than a burden. Hemophilia has taught me and my son, Thomas, a fantastic life lesson that instant fixes are hard to come by without a little ingenuity and adaptation, and that a little patience and a lot of hard work make you a stronger person physically and mentally.
The saying, “When life gives you lemons, make lemonade,” rings true in our hemophilia journey. We’ve rescheduled more than a few birthday and holiday celebrations due to hemophilia. And the funny thing is that the rescheduled ones usually turn out better than the originally planned ones! You learn to adapt to almost any situation when your family has a chronic health issue. If you let hemophilia knock you down, you stop moving forward; by learning to adapt, you learn to pick yourself up, brush yourself off and keep moving.
I’m still pretty set in my ways and I still like to get things done on my own timetable, but I’ve had to learn how to do that in hemophilia world. One experience stands out: our entire family was out grocery shopping at a warehouse type store a few years ago. I shop for groceries only once a month, so I had a long list and flat bed cart full of food. My husband, Nathan, and son had wandered off to another part of the store and our daughters and I were only a few aisles away from checking out. Suddenly, a stricken-looking Nathan and tear-stained faced Thomas came walking up.
“We need to go NOW,” said Nathan. “We’ll probably need to go to the ER for this one.”
Because this wasn’t the first time I’d heard that, I patiently asked, “What happened?”
“Thomas saw a sample he wanted, darted in front of me while I was walking and I tripped him. He went down on his knee. He went down HARD on the cement floor,” Nathan explained.
I groaned. (I’m still working on the patience thing!) “I have a month’s worth of groceries! I can’t put all this back.” I was on the verge of coming unhinged, knowing we had to get food into the house and now we had to get factor in Thomas. Suddenly, I realized I was standing in the midst of ice packs galore – the frozen food section. Quickly, I referred to my grocery list. “Go get the frozen hash browns, green beans and chicken breasts,” I said to Nathan as I started rearranging and stacking groceries on the flat bed cart.
He looked at me as if I was crazy, “We NEED to go to the ER.”
“We NEED food in the house too. And we’ll have to go home to grab factor before we head to ER anyway, so Thomas is going to have a seat right here on the cart, ice his knee as we check out and ride home to grab factor.”
Thankfully, Nathan grabbed a snapshot of this moment, because it has truly become one of my favorite pictures of Thomas. He’s thoroughly unhappy about the hash-browns-turned-ice-pack, but every time I see the picture I am rewarded with a good laugh and a memory of making the most out of a tough situation. And in this situation, adaptability and patience won — the hash brown ice pack held off the potential bleed, the groceries were secured and I have a picture that reminds me to have a little patience and to adapt when needed.
Sonji Wilkes was born and raised in North Carolina, where during high school, she developed an appreciation for volunteerism and community service. She graduated Magna Cum Laude with a BA in Behavioral Science from the Metropolitan State College of Denver in 2001. Sonji volunteers extensively in the bleeding disorders community and was selected as the 2006 National Hemophilia Foundation’s Volunteer of the Year. Sonji, her husband Nathan, and three children: Nora (11), Thomas (9), and Natalie (7), currently reside in Colorado.
*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.