It took me two weeks before I could write about it on Facebook after leaving the hospital. I guess it has taken me four months to write about it here with more detail. Max was diagnosed with Type 1 Diabetes at the end of January, two days after Kyle's birthday.
We had noticed in the previous weeks that he had been peeing a lot, and when I asked him about it, he said he had been drinking a lot, but for an 11 year old boy, you just don't pay super close attention to this stuff. In the back of my head, I had this nagging thought that something was different. We had noticed over the fall/winter that he had been "leaning out" which just seemed like a growth spurt. It was like an optical illusion, we would have guessed he had grown a few inches and just gotten taller and skinnier. But there was a nagging voice in my head that was sort of always in the background, because life is busy and it's easy to avoid these low-level issues for a long time.
Then one day, we put him on the scale (I never weigh my kids! They basically get weighed once a year at the doctor...) - and saw that he had lost 17 bs since his last doctor appointment in August. For a growing kid, this was like red alert in my mommy brain. I scheduled a virtual appointment with my amazing pediatrician, who didn't have an appointment for four more days. However I really trust her, and with something like this, I didn't want to see a different doctor. At this point, I was still in denial about these symptoms. Google informed me that all these signs (thirst, excessive peeing, weight loss) were classic symptoms for Type 1 Diabetes. I pushed that away, not really knowing what that was anyway.
So we had our virtual appointment on Friday at noon, and after discussing the symptoms, she said we should come into the office right away. We came in for an in-person appointment at 4pm, and within fifteen minutes she could tell us Max definitely had Type 1 Diabetes. I should have realized when she had tears streaming down her face, that this was serious. I was in shock and honestly had no idea what any of this meant. We were sent immediately to Randall Children's Hospital emergency room, being that it was now 5pm on a Friday, and then admitted after that into the hospital. I am so thankful Max was not in the critical state of DKA which is when a person can die. He was still talking, walking and functioning very well. If we had waited much longer, it could have been catastrophic. Thankful.
Once admitted into the hospital, it was just me and Max. COVID restrictions and three kids at home made it impossible for Kyle to be there too. In hindsight, it would have been infinitely better if he were there, because I had no idea how deeply frightening and overwhelming the next three days would be for me. Then again, I had to face my worst fears, and I'm surely stronger for that. Max was the model patient. Immediately starting on Friday, he was getting insulin shots multiple times a day, and for most kids this would a traumatic and shocking adjustment. Max was totally amazing, and although nobody likes shots, he understood this is what had to be done. From day one, this kid has accepted what needs to be done. He has never once refused or complained about what is needed treat this condition. I cannot express how proud I am, and how strong he is. Thankful.
The bulk of our time in the hospital was education. The doctors, nurses and diabetic educators streamed in and out, continuously explaining what has happened in Max's body (the death of a pancreas, in a nutshell), and how we now have to do the job of that organ manually, using several methods of managing blood sugars, all day, every day. I am a focused, smart person (IMHO) however I was utterly overwhelmed. As I numbly listened and tried to absorb all the vast information, I kept thinking "there is no way I can leave this hospital ever, because I cannot be responsible for all of this". However, the professionals definitely had plans for us to leave the hospital (LOL), and they were persistent in telling me we could do it. I forced myself to take over the calculating, dosing and giving of the shots while we were still there. I hated it. It was so stressful, and I was so full of self doubt that I could someday do this myself without oversight. I had many, MANY "come to Jesus" emotionally distraught moments late in the night after Max was asleep in his hospital bed. Never, ever in my life have I been faced with a responsibility so difficult. Once you have it explained to you how this disease works, and all that must be done to keep your child alive, it is just utterly overwhelming.
Here I am four months post-diagnosis, and I am now comfortable with the tactical part, but still very shaken at the reality that Max's life is in our hands. And will someday be in his hands, as he grows up. I guess that is true for us all in different ways, but there is a reason medical professionals say that Type 1 Diabetes is the most complicated chronic disease there is. It takes diligent 24-7 monitoring and adjusting. And even if you become an expert, that will not necessarily mean expert results. There are so many factors out of our control that affect the body, and without a working organ, it is just a fact that human management is not going to be quite as good. I'm working on accepting this.
The other part of the journey is mental health. Hyper vigilance in any area of life, has its own dark side. It will do no good to be utterly neurotic about diabetic management, if we cannot live a full, healthy life otherwise. I have experienced this reality with Marin's Celiac, but just not to this level, with this amount of risk. I am committed for Max, for myself, and the rest of my family, to strive for excellence in physical, mental and emotional health. I cannot become a psycho diabetes mom. Sometimes I teeter on that edge (ugh!), but I recognize that is not the life I want for Max in his adulthood, so I need to model good things right now.
Our medical support system has been incredible. These diabetic educators are infinitely more to me than simply doctors, nurses, dieticians and medical help. They have become counselors, a shoulder to cry on, cheerleaders and problem solvers. They boldly tell me I am doing a great job, when I call them after several weeks of persistently high blood sugars that I cannot wrestle down with all the tools in my arsenal. When I call feel defeated, and trying so hard not to let my son feel that defeat. When I think I'm going to be able to speak calmly, then burst into humiliating, uncontrollable tears as I try to explain what I need help with. These educators tell me I am doing a good job, when the numbers make me feel I am doing a terrible job.
Therein lies the rub... Learning how to measure success in ways that don't always make sense and are not "fair". Life with T1D is playing a high-stakes game with a different set of rules than we are used to. It's a long road of learning, adapting, and re-learning how to measure success, celebrate victory and know how to stay balanced on this life-long journey.
In addition to the medical support, I have discovered so many friends and family that know how to love well. I have deeply appreciated those who have the gift of compassion, and are able to enter into a world they know nothing about, simply because they care enough to try to understand. Not everyone is like this, and that's okay. Some of us are good at other things instead. But man, I cannot overstate how much the love and compassion has carried me on hard days. If there is one thing I hope will come out of this, is my own ability to show compassion in situations I do not understand.
The fact that all this happened during a COVID pandemic... well... those are deep feelings for another day... It will probably take me at least another four months to process THAT!
Other things I am thankful for... My amazing, resilient, hard-working family... all of us would literally do anything to help Max thrive. These difficulties have really pulled us together, and I am so proud of my husband, my daughters and my sons. I'm proud of my little therapy dog, who gives the best hugs to us all on a hard day. I'm proud of all the carb-counters in my household, the blood sugar alarm checkers, the mask wearers (gotta keep COVID out of this equation), these beautiful people who make up Team Corrigan. Thankful.
Finally, I'm thankful to God for His faithfulness in every single up and down that this life presents. We are never promised heaven on earth, but we are promised Emmanuel (God with us), who can redeem any situation, and bring beauty from ashes. I am confident of this, and trust in a beautiful, imperfect, purposeful, challenging, victorious, strong future for my son.
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| 52 carbs |
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| Making some free food |
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| Max's research paper on the inventors of insulin! |
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