As a mom, the single hardest thing for me about hemophilia hasn’t been the unpredictability, or the pain, or the insurance, or the infusions. The thing I struggle with and lose the most sleep over are my “unaffected” girls.
I’ve got this hemophilia thing down – recognize the bleed, treat it. Rinse, repeat. But conquering the abandonment and lack of attention my girls get because of all that hemophilia entails, well, I feel like I’m failing at that.
Initially, I thought we had a pretty good handle on the sibling issues. Nora is only twenty months older than Thomas, and Natalie only thirty months younger. I wrongly assumed that since the girls were so young during those early years, they had accepted hemophilia as our family’s way of life. Nathan has always stayed home with them when I am at the hospital with Thomas, so they always have a parent around. I literally went into labor with Natalie while Thomas was being discharged for a central line infection. We got him home, dropped him off with my aunt, and went back to the hospital to have another baby. I should have not assumed the girls understood hemophilia, since they were around it so much.
The girls have always been loved and well taken care of during our many bleeding-related crises. I always thought that I was making it fun for them, dropping them off with friends for “play dates and sleep-overs.” The girls tagged along on almost all our clinic visits and were showered with attention from the HTC staff.
Around the time everyone reached school age, something shifted. I honestly think it was the first time the girls noticed that other people don’t live the way we do. The girls begrudgingly accepted that sometimes they would wake up in the morning and Thomas and I weren’t there; we had gone to the hospital in the middle of the night. The girls also didn’t seem fazed on days when I, the person who drives them to and from school every day, wasn’t there at 3 PM and instead they were being shuffled off to a friend’s house. They didn’t like it, but never really complained. While the girls accept this, it’s not how they would choose things to be. They would act out in other ways and it took some reflection to realize that the behavioral issues were less about the behavior and more about what they weren’t telling me.
Thankfully, my oldest daughter takes after me and isn’t afraid to speak her mind. We got into an argument one day over something completely unrelated to hemophilia and she blurted out, “It doesn’t matter anyway. You spend all your time with Thomas. You don’t love me.”
It would be unfair to say she had broken my heart when I so obviously had broken hers.
We sat down and talked. I realized that I hadn’t taken the time to really explain what hemophilia is to her. I talked about how I was doing my best and that the chaos, confusion, and abandonment were way beyond my control. I apologized and complimented her on how amazingly well she handled everything and what a great big sister she is. We had a long heart to heart about what she was feeling, what I was feeling, and how we could both do better. We talked about making an effort to do more things together – just the girls and me. I even had her write out a list of activities we could do together. We promised to be open and talk about our feelings and frustrations more often. We acknowledged their validity, while trying to remember that we all are doing the best we can.
Basically, I figured out that treating the sibling issues was very much like treating a bleed: recognize the problem, treat it. Rinse. Repeat.
I’m sure we’ll have ongoing feelings of jealousy and anger with the girls about having to share their lives with hemophilia. It’s hard for them to live in the shadow of this disorder. And I know as their mom, I will make mistakes in how I can make it better for them. I just hope that through the hard times my “unaffected” (but certainly very “affected”) girls and I will always have an open and honest dialogue to make the most out of the lessons we’ve learned as a family living with a chronic condition.
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.
Mom’s Program Research Survey
HFA is conducting a short 10-15 minute online survey of moms with children with bleeding disorders. Taking part in this survey is your opportunity to voice your opinions and experience as a mom. HFA will use this information in order to serve you better. If you have any questions about this survey, please feel free to email Sonji Wilkes, HFA Program consultant at: firstname.lastname@example.org. Please consider taking a few minutes to complete the survey here: http://www.surveymonkey.com/s/HFAmomsurvey