Type 1: Our First Year
Updated: May 31, 2022
Caterpillars do not simply become butterflies by wrapping themselves in a nice little cocoon and taking a long nap.
They must go through change.
A change that completely breaks them down, digesting themselves from the inside out. Then, after a time, they break free, flutter their wings and fly. This is what I feel Diem’s life has been this last year. She’s undergone a complete metamorphosis.
At first, I felt completely shattered as I watched the ER staff rushing around her, talking to each other while I stood helpless a few steps away. A fly on the wall, watching the most bizarre scene take place in front of me. I can’t even remember how long I stood there, the voices running together, barely audible like I was listening from underwater. At one point, a nurse (finally) said that I could sit beside her because the IVs they were about to place on her would be painful. She barely flinched. I felt so proud until I realized she was so out of it, she likely didn’t have the strength to react if she wanted to.
My husband was rushing back from having just arrived in Louisiana desperate to know what the hell was going on and I couldn’t even tell him with full certainty because the ER doctor was speaking in code, short phrases, a lot of “maybe” type of talk until they were absolutely certain. That’s the part I hated most… not knowing, feeling useless and yet constantly hearing how “common” this was and how “eventually” she would be THRIVING.
If I never hear that word again, I’ll be completely fine. Not because I don’t like the word. It’s a fine mash-up of letters that amount to something wonderful. But as an exhausted, terrified mother with ZERO answers, I didn’t really give a shit about anyone’s best friend or cousin or uncle twice removed… I cared about MY baby lying on that bed in ICU for the better part of a week.
I cannot begin to tell you how devastating that grieving process was. The diabetes educators likened it to a death and they could not be more right. It was a death. We lost a lot. As individuals, as a family. Each of us had to learn, hard and fast to push ourselves a little more…
Be more patient. Empathetic. Understanding. Kind.
Let some things go to make way for something that might require more.
Having a “sick” child caused confusion and arguments in our marriage which in turn, caused more of the understanding and conversations for each of us to truly see how differently each of us not only have processed this huge change, but how we each feel certain things should be handled. Our big picture is the same, but the path can look different and it took time to find that happy rhythm once again. The asteroid did its damage and our world worked to rebuild into something we never planned for but somehow feels more us than ever before. It can be very frustrating and isolating at times because not only are my husband and I very different people and process things differently, but our unique circumstance makes it a little hard sometimes to truly express just how much more intense our daily life is.
I asked Chris what he found the hardest since learning Diem had Type 1 and he said it’s knowing that it’s for life and our little girl will always have something “extra” to deal with on top of whatever normal stresses that come with life. We have no one else in either side of the family who have an autoimmune disease so it’s been that much heavier educating ourselves along with all of our friends and family.
Now, a year in, I see this was always meant to be a part of our journey. I believe I was meant to be her mother. I believe Chris was meant to be her father. I believe we were meant to teach her how (both of our girls – but in keeping with the topic) to see her diagnosis as a part of her and not what defines her. We will still have more sleepless nights – I’ve quite honestly lost count on the days of sleep lost. Insulin is not a cure, it’s just keeping her alive until there is one and devices are only good as long as they’re working… and even then, we have shit days due to illness, stress, hormonal changes etc.
The week she got out of the hospital, she went to swim lessons. We took our puppy to the beach that summer and hiked and swam and went to all the places – I needed to just jump back into our life otherwise I knew I would drown in the fear and worry. Each day felt incredibly forced and every new thing we do, it takes ALL of my energy to focus and not let every minute detail overwhelm my thoughts and takeover the precious moments with our girls.
Cori cannon balls into the swimming pool because it’s easier than adjusting to the cold water bit by bit. So, I cannon ball into life with Diem and some of those trials run smoother than others.
As much as I hated that word “thrive” – that’s just what she’s done and watching her blossom this past year is probably the greatest gift I’ve ever received as a mother. Motherhood is never ‘easy’ but motherhood with a 24/7/365 beast of a diagnosis is one of those things that can either leave you feeling sorry for yourself or forces you to puff your chest out and face it head-on. We chose the latter.