I’ll never forget the moments that occurred in the hospital’s parking garage after our daughter’s type 1 diagnosis and our World of Diabetes Care crash course. My husband and I, my daughter, and her father (my ex) exited the elevator and paraded toward our cars, trying to be as upbeat as the cheerful balloons she was given during her six-day stay. Her dad had parked near us for this moment. My husband and I were taking her to our house and he was going to be driving off alone. She was packed in, and the door banged closed with the harsh reality that life had changed. My ex looked lost, and my heart squeezed from the agony of that look I knew all too well. Since we had already gone through several frightening illnesses with this kid, the only thing I could think to do was walk over, give him a hug and softly whisper, “Everything is going to be okay.”
Our efforts in managing diabetes in two homes meant much more than having an organized bag that followed our daughter through the two-house bounce. Some things had to be decided upon quickly. Others required the experience of living with the surprising ups and downs of those first days, weeks and months of diabetes to even know how to tackle the who, what, when, where and why of her care.
The following are some of the things we did, and still do, to help make our lives with diabetes feel good:
- Add a psychologist (or social worker) to your care team. Professional help is a vital part of a successful care team. Our psych/CDE helps us through times of change and of crisis. We owe everything to her.
- Fear trumps everything, even sleep. I once called her dad in the middle of the night after spotting a nightmare trend. I started with, “I’m sorry. I’m scared. Can we do some math together?” It was the right thing to do and it worked.
- Be a clever communicator. Don’t like getting a call telling you what to do and how to do it? Neither do they! Find ways to share info without saying, “I’m smarter than you.” Straightforward emails are best. Communicate without saying a word with My Care Connect Blue Loop. Her CGM alarms LOW? A notification tells us he’s on it.
- Kick control and blame to the curb, and learn to trust. I’m usually the best at spotting trends, but, her dad has skills, too. I force myself to remember his strengths and give them their due. This is hard for me, but she’s safe in his care, and that care is good enough. Blame gets you nowhere fast.
- Share ALL information. Share doctors’ contacts, appointment summaries, account logins and everything else. Ask for copies.
- Let your child have a voice. After all, it’s their body. Listen to that voice. And, if they’re sick and want to stay with the parent that gives them the most comfort, let them, just tap out if the days drag on and you need a break.
- Use a CGM, gain security. Again, this takes away the need to communicate face-to-face. Upload the data on a set day, so they know when to look for it.
- Be accountable, and have respect. Seriously… this one. I often annoy my teenager because I KNOW her dad, and what he would want is always on my mind. Truly, ALWAYS.
- Make a schedule of who does what. Plan out who orders and maintains Rx’s and supplies, navigates insurance, handles technology, schedules doctor appointments, school paperwork, 504plan, medication forms, nurse runs. Is it lopsided? Revisit.
- Show up together. From the beginning, we would sit together for our kids’ activities. When both daughters were in marching band we volunteered but gave each other space. The last two years found us working side-by-side-by-side. It was a thing of beauty. So were everyone’s reactions!
These are only some of the basic rules we follow. Notice here I never said that liking your ex is a rule. There is a difference between liking and respecting, or liking and trusting. I can even admire my ex, but not want to go out for dinner together and shoot the breeze with him. (Although I probably would if he asked.) The life of sharing your kid is hard. The life of sharing your kid, and management of her life-threatening chronic illness is even harder. And, I know how lucky I am to have two cooperative men in my life who help me give our daughter the best care we can.
This is the second part of a two-piece story on managing diabetes care in two homes. For part one, click here.