I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Sunday, February 26, 2012

Better Late Than Never

We attended our first Children With Diabetes conference this weekend. To say that it was an absolutely amazing would be the understatement of the year. It was like going home. It felt as though we were welcomed into this huge amazing family with open arms.

Jessica has struggled deeply lately. Although in retrospect it makes perfect sense, I did not realize that it is partially because she has entered a new developmental stage. When an adult is diagnosed with a chronic disease they are, for the most part, done developing. Children continue to work through the developmental stages. So, what diabetes meant to Jessica at age 7 is very different than what it now means to a 9 1/2 year old. She has been processing and mourning what the diagnosis means to her at this age, and it has been a bumpy road. Add her major growth spurts and pre-pubertal hormones into the mix and the high blood sugars have made her even more miserable. My heart has ached for her, and I have been more than a little frustrated at taking the burden of many of her outbursts. She has told Sean and I often that we don't know what it feels like to be her. She is absolutely right. And, so we registered for this conference hoping it would help. Jessica was not excited to go Friday..."why do we have to go to this conference? I know I'm not alone in having diabetes...why do I have to go see other kids with it too?" But, we drove to Conshohocken (I kid you not...that is really the name of the town!) and made it to the hotel late Friday night.

Within an hour of the conference starting I knew we had done the right thing by coming. There is simply nothing else like spending time with other families who in this one area are living as we are. We saw old friends and met so many new. We all share the same language, we all know the emotions, the roller coasters, the highs, the lows, the fear, the pain, the hope...it was like being surrounded by so many kindred spirits.

The day was packed with lectures for the grownups, while the kids were in their own sessions. My mind spun from the graphs, the equations, the massive amounts of information being thrown in my direction. My heart ached from hearing others diagnosis stories, and bled from talking with the newly diagnosed. I am not yet so far out from Jessica's diagnosis that it does not cause physical pain to think about it, and to see others in such pain. But yet, I was able to tell them..."It gets so much better." And, it has. It so completely has.

I met so many absolutely amazing kids. Kids that were diagnosed at 8 months, 12 months, 2 years. Kids that were diagnosed the same age as Jess. Kids that were diagnosed older. All of these amazing heros who prick their little fingers multiple times a day, endure injections and site changes on their small bodies, brave highs and lows even when some of them are too young to even understand why they feel this way. They are not without fear or anger. But they are resilient and brave, and above all else they are kids.

I met adults living with Type 1 who were inspiring. They give me hope. They comfort Sean who has lived his life with Type 1 in relative isolation. Getting diagnosed at almost 18 has its own pitfalls...he didn't have the chance as a child to be connected into the Type 1 community. There were so many awe inspiring adults with Type 1....it was humbling to be around them and to learn from them. I found myself swallowing tears multiple times as I watched with huge gratitude as they enveloped the Type 1 kids in hope and support. I watched as Sean experienced such comfort talking with them. He thanked me for registering that first night with tears in his eyes...he told me that he knew we did it for Jess, but that he needed it too.

I watched Jessica smile and run with her new buddies. I held back tears of comfort watching her and her friends check their blood sugars together. I laughed as she showed me a friends pump covered in duct tape (the new tween rage-duct tape?!) and tell me she wants to do that too---"Mom, isn't a duct tape pump cool?" I listened in complete shock as she told me "Mom, I might not take the cure if it comes...I actually am ok with diabetes," as she then fled off again with her Type 1 buddies. I watched proudly as she showed other kids her Dexcom...the very gadget that she only months ago refused to wear.

A group of us went to dinner last night...what an amazing experience to be able to say to other parents..."How many carbs do you think are in that?" How comforting to groan with another mom that the night might be rough with the likely highs from eating out. For the first time ever we forgot to bring insulin...how amazing to have another adult Type 1 bring us a bottle, and also a new pump site for Sean to try that she thinks he'll like better.

This morning new friends came down without the mom. "She's still sleeping?" I ask. "Rough blood sugar night" says the dad. Their adorable T1 daughter sits laughing and happy. How comforting to look at them and know exactly what it is like. The exhaustion, the worry, but the pure joy in seeing your happy child un-phased by the rough blood sugar night as they slept soundly while the parents kept watch.

The morning wrap up lecture was incredible. But, it was completely emotionally draining. There were many tears shed as one dad shared his experiences in raising two T1 kids. The fine balance between supporting your child, but yet allowing them to stand on their own. The inspiring slides of all the famous and not so famous type 1 kids that have grown up to do amazing, amazing things. The powerful words he spoke to all the T1 kids as he told them they can do "ANYTHING!"

There were tears shed by Jess when we told her it was time to go. She handed me a stack of papers with all her new friends phone numbers. I watched as they giggled and talked of meeting in Orlando this summer for the Children With Diabetes Friends For Life conference.

So many other huge things happened...we met Kerri Sparling of Six Until Me. My kids adored her, treated her like a celebrity, and asked for her autograph. For me, it was surreal...I have read her blog so much these last two years. Her musings have comforted me, brought me hope, and been refreshing in their honesty. To meet her in person, was truly incredible.

Watching Jessica be in the majority instead of the only kid with diabetes was phenomenal. Here, at this conference, Courtney and I were the minority with our still working pancreases. Yet we were welcomed as part of the Type 1 diabetes family. I watched thankfully as a T1 adult told Courtney that it was ok her pancreas still works, and explained to her that she was something called a T3 and that Type 3's are incredibly important people. I watched as Courtney became fast friends not only with all the type 1 kids but the siblings without diabetes as well.

As we have found with the other family support weekends we have attended...return to the real world is hard. At the conference the food is labeled, and the world is sheltering. We left so incredibly happy that we attended, but also emotionally drained. There is so much intellectual information to absorb, and so many emotions exposed that I find I come home exhausted. I find myself wishing that every one of my patients could find a support group such as Children With Diabetes. We all returned more motivated, and more healed. And, we are already counting down the days to our next Children With Diabetes conference.