August: Our Family's Diaversary Month
For every parent, the birth of their child is a significant month. But for the parent of a child with a rare disease, or a significant diagnosis, the month of diagnosis is also a time that is forever remembered. For some, especially in the diabetes world, we call this our "Diaversary". August is always a hard month for me because I am excited for the new beginnings of school. The smell of fresh pencils and notebooks. The look of brand new shoes and clothes on the kids. Everyone is looking their best in all their gloriously shiny new backpacks and smiles as they head off to a new school year and Katie's birthday is always celebrated around this time too.
But that joy that I feel is always shadowed by the tightness in my chest as the end of August approaches. Because as most parents know who have been through the trauma of the NICU, PICU, a cancer unit, a significant hospital stay for any reason, or even just the endless appointments it takes to get the official diagnosis of autism (it's not an easy road), you never forget the emotions of those moments. There are even some psychologists and psychiatrists who say that parents of children with chronic illnesses, rare diseases, and special needs experience PTSD. I would have to agree with that because I am 13 years into this journey and it still pains me to look at the pictures of my son back then. It is one of the biggest reasons I have never even finished his baby album, and honestly quit scrapbooking altogether. I just couldn't bring myself to put the pictures together on a page. Quite honestly, it is probably the main reason I am struggling with writing my book. I get stuck because the emotions are still so raw. Even typing these words, tears are beginning to flow.
So here is our diabetes diagnosis story. Not the full version. I will save that for the book some day. But for the sake of the Diabetes Anniversary, here are both Andy and Katie's shortened version of their initial diagnoses.
Andy was born April 18th, 2005 and spend 6 days in the hospital. Doctors were baffled by something that didn't seem right with him. But test after test showed nothing wrong so we took him home. He slowly began to gain weight, nurse, and grow like a "normal" baby. He had what we thought was colick and Dan used to hold him by his tummy to soothe him at night. Andy began to sleep through the night around 6 weeks old. We took our first vacation as a family in the beginning of July and when we cam home, I weighed him on our bathroom scale. At the time, he was weighing in at about 13 pounds.
At the beginning of August, Andy started attending an in-home daycare. At the same time, I also ended up spending a night in the ER for kidney stones. The weekend after that, he got his first cold so we just attributed it to one or both of those as the cause. However, when he didn't seem to be getting better, we took him to the doctor. The doctor said "it's a virus, let it run it's course". The following week was his 4 month check up. When his weight showed up at 10 pounds, the doctor said he hadn't gained weight since his 2nd month. I told him he had lost weight based on my scale at home, but the doctor blew it off and said not all scales are accurate. Several more visits and several more "grasping at straws" diagnoses and I was getting fed up with the doctors at the pediatric group we were using.
On August 23, 2005, Dan got off work early and picked Andy up from the babysitter. When he did, it was obvious that he was extremely ill. Andy was rushed to the emergency room around noon that day and the doctors and nurses worked frantically for what seemed like an eternity. Around three hours later, the doctor pulled a paper off the lab report and shook her head in disbelief with the words I will never forget, "his blood sugar is high and his pH is low. It doesn't make sense. He's too young!"
It would take over 2 days to bring his blood sugar down because he was over 1200. His right side was paralyzed and although he was "awake", he wasn't really there. Dan and I called it a waking coma. He wasn't technically in a diabetic coma, but he just lay there, not really responding, not really looking into your eyes, not laughing or smiling, just barely hanging on. It was August 26th, around 3 AM in the morning that Dan told me Andy woke up in the bed next to him and was finally alive again. His boy was finally back again and he knew that he would be alright.
Initially, the doctor we had at that hospital told us Andy had a really early onset of Type 1 diabetes. Just some unusual, unexplained reason that our 18 week old baby all of a sudden needed insulin for life support and would need it for the rest of his life or until there was a cure. It would take a move to another state before we found out the true diagnosis over a year later.
Four years and four days after Andy's birth, we welcomed Katie into the world. On August 18th, 2009, she was brought into our world with a little bit of heightened anticipation. I already had my suspicions even though the doctors had tested both Dan and my DNA with negative results. But the fact that her growth was dropping during the third trimester had me worried that we might be headed for round two. To appease me, our pediatrician agreed to have her blood sugars tested regularly starting immediately at birth and again within the second hour and then every 3 hours while she was in the hospital. The agreement was if she was over 100, they would put her into the NICU for observation.
Her first blood sugar fresh out of the womb was 96 and the second was 117. I knew it immediately. But the doctors were once again baffled. They just could not logically reason that two parents whose DNA was negative for the gene, and one child with a suspected de Novo mutation could have a second child with the same genetic mutation. Lightning should not have struck twice. Over the course of the next week, we continued to check sugars. She only had a sugar below 100 once or twice and both times it was in the high 80's. Typically newborns should be between 50 and 70. Still, the doctors did not want to rush to conclusions. Besides, they knew that her DNA was already on its way to Chicago to be tested so we would know for sure soon enough.
By 7 days old, she started having her first blood sugars over 200. However, because she was able to still come back down on her own, the doctors still refused to believe she had the same condition. I finally put a call into the main doctor in Chicago on August 28th and by that afternoon she had her first dose of Glyburide. It would be another 10 days before her genetic test confirmed it but my early instincts had been confirmed. Both of my children had Neonatal Diabetes.
Thankfully we have been blessed with one of the genes that can be treated with pills instead of insulin, so their diabetes is the mildest part of the battle that we fight. There are others we will fight for years and decades to come. I have to admit, there were years when I would be angry at the diagnosis. But now, I see this more as a purpose and a mission. I can see how my background has prepared me to help my children and, I hope, help other parents along their own journey. As we go into another year, I feel like we are beginning a new chapter now, one where we will partner with each other and help others find their way to the best care for their own children and themselves. Whatever that looks like, whatever form that takes, I hope what Dan and I have learned in the last 13 years will be a little bit of a light for your own path.