From feeling overwhelmed at their child having been diagnosed with a lifelong condition to acceptance, hope, and triumph, this family pressed on.
At 3 years of age, their little boy was diagnosed with Type 1 diabetes. It has not been an easy journey. Having to stick his little fingers multiple times a day and dealing with crazy blood sugar readings has been a challenge. Packing his diabetic supplies for every outing and ensuring that anyone who watches him is educated in diabetes care is daunting. But with support and love, this family found their new normal.
See their story below.
What was your initial reaction to your child being diagnosed with Type 1 diabetes?
Scared, but relieved all at the same time. I was scared for what the future would be for our son, but relieved to have an answer for how ill he had been. I don’ t think I understood or realized how his diagnosis would change our lives initially. I just tried to be strong for not only my son, but the rest of my family.
What things did you think your child would have to give up but can still do since being diagnosed with diabetes?
I knew that he would still be able to do the things he always could, but that we would just have to be a little more organized in how he did them.
What has gone well on your child’s diabetes journey?
How well he has adjusted. My big concern for him when he was four (especially with how he reacted to finger sticks, shots, etc. initially) was how we would ever get into a routine. But, to our surprise in just a couple weeks after his diagnosis, he was asking what his carb count for the food was, understood what having diabetes meant, and was getting his finger sticks and shots without a fight.
What has been the biggest support for you?
Knowing that we are not alone and how we now belong to this T1D family. Within a week of my son’s diagnosis, a friend had gotten me in touch with another T1D mother and we went for coffee. At a time when I felt so overwhelmed, I had someone who had been doing it for years giving me all the insight I could ever need. These people I barely knew were willing to help in any way they could to make the transition easier for my family.
What did you discover about yourself (your resiliency) during this journey?
We are made to adapt. Just as my son has shown tremendous strength and bravery, I have done the same. Even though it is extremely demanding to manage this disease, I can do it. You just take life with a child with diabetes day by day. There just isn’t any other option.
What did you discover about your child?
I always thought my child had a low tolerance for change and pain but I was wrong! He transitioned with grace into his new life and routine. He is braver and stronger than I ever thought he was. It has really opened my eyes to the resiliency of my son.
How do you manage during times when your child is scared or angry?
I just hug and reassure him that we will get through the hard days together. I make sure to reaffirm his feelings and that is OK to feel angry or scared. I remind him how brave and strong he has been and will continue to be.
How do you advocate for people with diabetes?
I try and educate those around us. There are so many misconceptions about T1D and to some degree a lack of empathy for those who must live with it. I try and be patient, but also educate those people. No one but another T1D parent will understand your fears and struggles, but if we can start to help the world understand a little better, that is all we can hope for.
Do you have any tips or words of advice for other parents who are embarking on this journey?
Don’t let the process wear you down. You will certainly have really tough days, but celebrate the good days. Also, know that to some degree, your child’s blood glucoses are out of your control. You may do the exact same thing one day with great results and the next day experience something completely different. Your life will be a rollercoaster. Take it day by day and know that you are not alone. Receive the help and support available to you within your new T1D family.
If your child has been diagnosed with Type 1 diabetes, there is support. You are not alone.
UPMC Health Plan Pediatric Nurse Care Managers are available at 1-866-778-6073.
For more information, visit our Pediatric Diabetes Resources page.