The saying goes that "a mother's work is never done." As a mother of three myself: So. Totally. Agree.
But then there are the moms whose jobs transcend ordinary parenting, those forced to manage a child's illness, with all the heartbreak and drudgery that can entail. Another saying: "what doesn't kill you makes you stronger." So very true for moms of kids with type 1 diabetes -- extra-specially for Northern California D-advocate Tamar Sofer-Geri, originally from Israel, whose 14-year-old daughter Tia was diagnosed in January 2009.
Tamar shares her thoughts in honor of Mother's Day 2014:
A Guest Post by Tamar Sofer-Geri
I often joke that five years ago I earned a medical title that I didn't study for, was not prepared for, and never wished for: T1D MOM. I didn't go into debt getting it, but it has come at a very high price!
T1D MOMs never have the privilege of turning off their cell phone or going on a hike knowing that the phone might be out of range. We become the designated play date hosts because it's so difficult to ask other parents to be responsible for our children at their homes. We chaperone every class trip, and provide the snacks for class parties, so that we can get the carb count right. Sleepovers are always at our house, and the idea of leaving the kids with a sitter is more stressful than the fun that may follow. Forget about going away for the weekend and leaving the kids with the grandparents!
Whether busy at work or running errands, T1D MOMs' minds are always racing: are my child's numbers in range? Are they high? Is (s)he feeling okay? Did she remember to take her meter? Did she take her insulin insulin at lunch? Is she low after PE? Will someone help her if she goes low? What if she's run out of low supplies? And the nights aren't much better, as we get up to check our children's blood sugars once or more on many nights.
Our kids are growing up, but their diabetes continues to act like a newborn baby (so needy!).
As our kids reach the teenage years and adulthood we do hope they will become more independent and take on more responsibility in managing their own care. But that is a slow and very gradual process. You can't quit being your child's full-time pancreas overnight. You need to give a year or two notice and do a lot of training in the interim to make a smooth transition.
For the last five years when I am not worried about how my daughter is doing right now, I worry about this transition and how she will manage when she leaves home. We have found that the key to our success is learning from and sharing with others who walk in our shoes. Luckily, through Carb DM, the non-profit organization I founded three years ago, we have been able to create opportunities for mothers and daughters to connect, learn, and thrive.
We recently held our second Mother Daughter Weekend with 66 mothers and daughters ranging in ages from 11—28. It was a weekend filled with learning, laughter, and bonding. Having a strong community of T1D MOMs and their daughters allows us to learn from others experience and mistakes. It reassures us that despite the mistakes, our children will make it through the transition and thrive. It also gives both moms and daughters a network of support to fall back on if and when conflict arises.
Here are the top five things I've learned about how to help my daughter manager her diabetes:
- I thank her every time she checks her BG. It's not easy to remember to check your BG 10 times a day. It really interferes with life. Thank them. Acknowledge that you know this isn't easy and show them you appreciate them doing it. If you're not happy with the number, saying thank you forces you to say something positive rather than sigh or get mad.
- Language really makes a difference. Let go of judgment. There are no "good" numbers and no "bad" numbers. They are all just data points on which we base our decision-making. PWDs feel judged enough by their numbers; if we add to that judgment, they will not want to check their BGs.
- Use humor and fun: when my daughter's number is high, I often tell her I "suspect" she might have diabetes. When she is 101 we call it "Dalmatians." And when she is low, she tries to enjoy her low treatment.
- It's okay to help them out. I'm not saying we should do it for them all the time, but if they don't feel like checking their BG but are willing to hand you a finger—check it for them. If they don't want to press the buttons on their pump or fill their own reservoir—do it for them. There will be plenty of time for them to do it all on their own. During these transition years, they will take two steps forward and one step back. Show them you've got their back, and they will surprise you!
- Forget the blame game. When your child comes home from school with a high BG because she didn't take insulin for lunch (again), don't blame her for being neglectful or forgetful. Instead, let her know how you feel, and work with her to problem-solve and eliminate the obstacles that are preventing her from doing what needs to be done. You'd be surprised how simple the solution may be.
T1D MOMs are an exclusive group. We never want to welcome new members into our midst, but when we learn of a new member, we welcome her with open arms. Happy Mother's Day to all moms, and especially the T1D MOMs. Most moms give their children life just once. We do it every day!