Your child's been diagnosed with Type 1 diabetes. Juvenile diabetes. The bad kind, you hear. The immediate shock wave that knocked you down in the doctor's office or pummeled you in the ER has washed over you now...kind of. The cotton mouth, you discover, won't be permanent. The lump in your throat seems to have shrunk a bit, or perhaps slid down to your heart, where it just sits, like a bowling ball. It may be Day 2 in the hospital, or a couple weeks since your son or daughter has been back home. You've bawled more than you have in all the days of your life...combined. You may have returned to that place called "work", but it's different, with a bit of a "Twilight Zone" funk. Nonetheless, it offers a dose of distraction and perhaps is even a bit medicating with the sympathy, well wishes and "if you need anything" offers of help from colleagues and associates.
And while your wife has courageously, naturally launched into "mother mode", readying, organizing, comforting and generally just getting on with a life that is drastically different now, your contributions to that effort have been mechanical as you struggle with the numbing refrain of questions your mind seems to have put on an endless loop: How could this have happened on my watch? Why didn't I see it coming sooner? Why did this happen to her (him), she had so much life in front of her? Why couldn't I keep her safe? Why can't I fix it? What now? Guilt attacks you, testing your faith, beliefs and core ethos as you wrestle these questions. If this scans with you, take a deep breath and know that in spite of Type 1 diabetes, the promise of a wonderful life awaits your child, your family, your spouse and you.
Here are some things, diabetes-wise and in general, that can help you and your family as you move forward out of the haze of initial diagnosis:
1. Acknowledgement. Acknowledge and absorb the fact that there was nothing you or anyone else could've done to prevent the onset of Type 1 diabetes in your child. Yeah, the docs and nurses all tell us that, but we don't get it right away, even though it's absolutely true. You didn't allow this to happen and you couldn't have prevented it. Acknowledge and absorb the fact that alone, you can't fix your child's diabetes. Now, save this last reality, because while alone you can't, you'll be amazed at how much you can do when you team up with others...starting with your wife.
2. Support. Be profuse in providing it, starting with your wife. She'll undoubtedly bear the greatest wieght of the daily care your child now requires; and that's compounded if she's a working mom. Give her your time. It'll mean sacrificing in other areas of your personal life be it hobbies or career, but it will nourish your partnership and enhance the care you both provide your children, particularly by reducing the stress diabetes can cause.
3. Basics. Know the basics about Type 1 diabetes, then expand your knowledge from there. Study Type 1 diabetes and related areas such as metabolism and nutrition with the same energy you'd apply in your business, profession or career. This real understanding of diabetes will be empowering and will translate to more aggressive insulin therapies and better nutrition and dietary plans for your child. And, you'll be more comfortable discussing diabetes with others such school officials and nurses, scout leaders, church volunteers and others in your community.
4. Patience. Type 1 diabetes can be fearful and intimidating to most around your family who would otherwise come to your side. Sometimes even the most supportive family members and friends shy away. It's not because they don't want to help or support you, but often because they're afraid or don't understand the disease. Until those fears are dispelled, "support" equates to showing up for a JDRF walk or making a donation. Good things, but not the direct help your family needs. Be patient. Use meal boluses and injections, glucose testing, meal preparation and calculating as opportunities to teach and inform those around you. Encourage your children to engage friends and family in this "education". But give it time. As parents, we all dove head first into dealing with all the complexities of diabetes because we had no choice...our children's lives were at stake. With others, be incremental, with small manageable dollups of info that over time will break down the fear and intimidation people have.
5. Technology. Embrace it, learn about it and use it. I admit, I'm a techno-boob. If something's got more than five moving parts or contains software or "apps", I'm toast. When we buy a car, Nat's out under its hood with the technician eyeballin' megafilators, hoses and fuses while I'm inside eating apple cider doughnuts and talking NFL, NBA or international rugby. But I'm now a techno-boob who's pretty slick when it comes to insulin pumps, food scales, glucose meters and the latest lancets (although near as I could tell, there are still only two moving parts in the most advanced versions). It's awful that our children have Type 1 diabetes, but the time in which we live offers us and our children an amazing armament with which to battle and own this disease. Avail yourself of these technologies and tools and utilize them to their fullest...the benefits to your child's health are significant.
6. Activism. Become an activist against Type 1 diabetes. Pick your campaign and pile-drive the pedal through the floor. Public Awareness, fundraising, volunteering, outreach, adoption: With each person we make aware of Type 1 diabetes, we increase the likelihood of financing a cure and with each person we educate about the disease, the safer our children become as they travel about our communities. I believe a cure is possible; and I believe together we can make that happen. But we need to jack up the volume to get it done. To those outside the Type 1 world, the disease appears manageable, not so bad. Its lethality and the toll it takes on our children's bodies while it's being "managed" is disguised by its outwardly inocuous appearance. While we need to be patient with family and friends as we acclimate them to our new life, we must be urgent about finding a cure and improving lives in the meantime. How urgent? How much time? How much money? Look at your child and imagine the freedom a cure would offer; or the tens of thousands fewer needle sticks and injections avoided because of new technological advances; or the life-saving actions of a complete stranger who overheard your talk on diabetes at the local library. Then decide.
As dads, husbands, men, we have an opportunity to lead our families through a difficult, unexpected and life-changing development, to give our children opportunities to grow and develop in ways we previously couldn't have imagined, and to make a difference in the lives of others we don't yet know. My wish for all of us is that we strive for the greatness intended for each of us. Then truly great things will happen.
I’m Natalie. I’m a mom of three kids, two with type 1 diabetes. As you know, parenting children with type 1 diabetes is a journey of long nights, lots of work, and seldom much support. There’s not much I can do about your long nights, but I hope our website and blogs offer you some support. I look forward to blogging with you.
My son is two and was recently diagnosed with type 1. In our house, mom and dad bear the brunt of the care. My husband and I firmly believe in sharing the care of our son -- we are both his primary caregiver. (And not just b/c we both work.) My husband cooks all the meals and gives his morning shots. I know not all men are as involved as my husband, I just hope, especially with a sick child, that support doesn't just mean showing up for dinner and asking how her day was.
We now have a second child on the way, and I know my husband and I will tackle whatever the future has in store for us ... together. And that makes living with diabetes so much easier.