This past April my husband, Joe, and I celebrated our 22nd wedding anniversary. Statistically speaking, I guess you could say we are one of the lucky ones. Throw in the fact we have three kids with chronic illness, now we are defying the odds. By no means do we have a perfect marriage, but what we have is perfect for us. When we only had one child, and didn’t know anything about chronic illness, we used to take get-away weekends to reconnect, unwind, and just be together. As time goes on, you get busy with kid’s activities, work, the birth of another child; and that those get-away weekends are forgotten about. Add in a chronic illness and your world becomes isolated. You want to grab a hold of your family, not let go and try to control everything. Unfortunately, no matter what your chronic illness is, you can’t control it. You’ve got to learn to roll with it.
When our second-born was diagnosed with Type 1 diabetes, our world was turned upside down. We had to learn to be her pancreas. Let me tell you: it’s hard being an organ on the outside. Trying to figure out how a pancreas works, and then administering insulin to mock what the pancreas does, is hard work. It’s constant 24/7 care. Everything can affect blood sugar levels; hormones, stress, anxiety, excitement, illness, carbohydrates…you name it, one shift in any or all of these things and a blood sugar can swing out of range within minutes.
After her 2005 diagnosis we found a new normal. I was fortunate in that I had a part time job in the evenings and was able to provide the care she needed during the day and then my husband was able to take care of her when I was at work. Get-away weekend? Who in the world would be able to step in and take care of our daughter who needed constant monitoring? It was stressful. There were trips to the diabetes clinic every three months, constant battling of insurance for necessary coverage for supplies, calls from school on out of range blood sugar readings and constant blood sugar readings every three hours (sometimes more if needed are necessary) to keep our child alive. However, we made it work. I would lean on my husband when I was exhausted and he would take a turn checking blood sugars so I could get a little more sleep. It wasn’t perfect, but it worked for us.
In 2008 our son, Jackson, was born, and diagnosed as severe A factor VIII deficient. Once again, our lives turned upside down. Spontaneous bleeds, prophylaxis, factor, infusions, ports, inhibitors were all foreign words to us. Our little world once again became isolated. I was working a part time evening job so the doctor visits were something I took care of during the day. We would travel to our local Hemophilia Treatment Center (HTC) once a week for his infusions. It became our second home. The staff knew us and loved us like one of their own, but that didn’t make it any easier when you had to physically restrain your child so he could get his infusion. When he was a little guy he coped the best he knew how: by kicking, screaming, and crying. As a mom that is the worst feeling. You naturally want to protect and care for him, all the while knowing he needs the infusion. I was emotionally drained on those days.
As our son grew older he came to accept his treatment and his infusions increased to two times a week. Luckily we were able to schedule his second infusion from home and it was a day that my husband was off work. This was a great option as it was a form of support. He was able to help our son by being there and then understanding what I was going through as the main caregiver. When we graduated to administer factor on our own my husband took the lead. While we both learned to infuse it was Joe who was the primary IV administrator. But, get-away weekends? Who would watch our son who could spontaneous bleed? Or how could we schedule a quick trip between his infusion schedule?
In 2012 our eldest daughter was diagnosed with Type 1 diabetes. Once again I took over as primary caregiver. I took care of doctor visits, insurance battles, prescription refills and empowering her, since she was 18, to take charge of her own care. Joe and I rallied in our new world of three kids with chronic illness. We have found as we have adjusted to our new normal, the kids have gotten older and we have educated key people in our family to know what to do so we can get away.
We cherish our time together, even if it’s a trip to the grocery store without the kids! We make more of an effort to find the time to talk about our day and what is bothering us or celebrate a small victory. Sending a “thinking of you” text throughout the day lets us know that we really are thinking of each other because otherwise, it’s easy to get caught up in the day-to-day schedule. Some things we have started doing are thoughtful texting or a quick phone call, (not I need you to pick this kid up), but hope you are having a good day. We’ve begun scheduling date nights at least once a month, coffee dates, lunch dates, leaving notes in each others cars to find, and trying to go to bed at the same time so we can unwind and talk to each other.
I encourage you as a caregiver to children with chronic illness to talk to your partner. Don’t assume they know what you go through in a day and all you deal with. Communication is key. They don’t know if you don’t share. I used to put on a brave face and appear that all is fine but that created resentment. It wasn’t until Joe knew all that I was taking on and the stress I was feeling for him to acknowledge, appreciate, and then jump in to help. Again, it’s not a perfect marriage, but who has a perfect marriage? Who defines that? While we are tired and stressed from dealing with chronic illnesses, we still work hard and have found what is perfect for us.
Jen lives in Ohio with her husband, Joe, and their three children: Evelyn (21), Nora (14), and Jackson (7).
*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.
