The drive to the hospital was met with busy chaos. The hardest phone call I’ve ever made was to my husband, Mark that afternoon. I had to call and tell him that his 2.5 year old little boy had Type 1 Diabetes. The same disease that he grew up around. The same disease he held a lot of resentment towards for the way it impacted their family. We both went into survival mode of working out logistics for childcare, school, etc. We divvied up our list of people to call and arrangements to make. This left little space to process or even acknowledge the emotions we were each experiencing. My next call was to my sister. Oh how I needed her. If only there weren’t 1,300 miles between us. She provided the comfort I needed in order to make the dreaded call to my parents. While doing this, I just drove. I instinctively drove to my friends house who I knew would do anything for me in my moment of need. I knew Crew would be safe and happy there. Looking back, it’s beautiful to think of a friendship like that. After working out logistics for the other two, I remember adjusting my rear view mirror so I could just stare at Keaton and pray over him. I needed that time. I knew the next few hours, days, months and years in his life were going to be a challenge like we’ve never faced. A challenge that would change the course of his story and our family’s forever. We met Mark at the Children’s Hospital Emergency Department, and embraced with a hug of heartache and compassion for the other like I’ve never experienced. They rushed us back to a room, even though the waiting area was full of kids. A similar simple, yet complex device like we saw at Keaton’s pediatrician was used, but this time gave us an accurate number. It read 695. That was 7 times higher than a normal blood sugar. Right then and there he was given his first dose of insulin (a word that now fills our daily vocabulary). To the doctors surprise, we had caught this new diagnosis early, within days of onset. Most kids go into something called DKA before they are correctly diagnosed and many come very close to death, but Keaton had not. We were prepared to be hospitalized for days, possibly through Christmas and instead we were free to go home that night. We were instructed to report back to the hospital the next day so we could learn how to take care of Keaton and manage his Type 1 Diabetes. While going home in many ways was a relief, it also brought about a lot of anxiety. I felt safe within the confines of those hospital walls. Every other person I saw was outfitted in scrubs or a white jacket. They knew what they were doing, I did not.
We came home to my parents caring for three confused and worried kids. The compassion they shared for Keaton was beautiful. They had a lot of questions and most we didn’t have answers for. One question I will never forget came from Campbell who pulled me aside so Keaton couldn’t hear and tearfully whispered, “He’s going to die, isn’t he?” I reassured her he wasn’t, and explained how we caught it early. In a confused tone she whispered back “Then why does diabetes have the word die in it.” Wow. That question still shakes me to my core.
I slept sound that night. I don’t know how. Perhaps my body knew how many sleepless nights I was about the embark on and graciously allowed me one final restful night. We woke up well before the sun and headed to the hospital with a sleepy Keaton in tow. That day was an exhausting 8 hour crash course in managing this disease, which unknowingly included 12-15 finger pricks and 4-6 shots daily, just to keep him alive. I quickly learned this was NOT to cure the disease, there was no such thing. This was merely to keep him alive. We practiced administering the shots on oranges and I got pretty good at it. That is until I had to give Keaton a shot. I couldn’t do it. I. Just. Couldn’t. It took 2 nurses to restrain his little body and I couldn’t be the one to poke him with the needle. It was such a weird dichotomy that the most loving thing I could do for my son in that moment was something that caused him so much trauma pain and trauma. I couldn’t grasp that concept. I still have a hard time with it. As I held the insulin filled syringe I realized that even though I couldn’t do it, I had to…and so I did.
The next few weeks are a hazy blur. If only I knew then what I know now, I would have pleaded to be kinder to myself. I put so much pressure on myself to maintain life like it was before diagnosis…but it wasn’t. I held onto so much guilt around not making it to Campbell’s Christmas party like I promised, not volunteering for the opening of our new church plant, not being prepared to play Santa, etc. Somehow I even ended up hosting a Christmas Eve dinner gathering at our house just three days after diagnosis. Looking back, I realize that was crazy. It must have been my attempt to pretend everything was ok…but it wasn’t. Why couldn’t I be kind to myself and love myself well during that time? Why wasn’t I able to advocate for my needs?
I wish I could go back and warn myself not to take it personal when the friendships around me would change after diagnosis. I felt so different and so isolated. Because type 2 diabetes is such a national epidemic and responsible for 95% of people with diabetes, it is understandable that they often confuse the two, when in reality they couldn’t be more different. Keaton suffers from type 1 which is an autoimmune disease. Nothing, or no one caused it. It wasn’t anything he ate or didn’t eat. Nothing we did, or didn’t do that caused this. His body simply stopped making insulin. Unlike type 2, there is no exercise, pill or diet plan that can cure him. Believe me, I wish there was. I was devastated when friends who know me asked questions like “Did he just eat too much sugar?” I’m sure it was hard to be my friend during this chaotic time because I truly didn’t know what I needed. I knew what I didn’t need…I didn’t need people telling me about their experience with type 2 diabetes. I didn’t need comments like “at least it’s not cancer”… “is he getting use to the shots yet?” … “they make shots now that you don’t even feel, right?” … “my grandma’s cat had diabetes” … “my grandpa had diabetes and had to have both his feet amputated”… or my favorite, “God must have known you could handle diabetes, he sure knows I wouldn’t be able to.” While there is a lot of grace for people who don’t know what to say and may unintentionally say something offensive, it still hurts deeply. Admittedly, while it was so easy to know what I didn’t need, it was harder to identify what I did need. Honestly, sometimes I still don’t know what I need. I just needed people to enter into the pain with me. To hold my hand as I walk this uncharted territory. I have many in my life who did just that, and I know how blessed I am to have those friendships. So many have loved me and my family so well. While there has been great suffering in our lives since Keaton’s diagnosis, there has also been so much beauty and those special friendships represent that beauty for me. This experience has been truly unique in that I have never experienced suffering and beauty at the same time like I do now. Before Keaton’s diagnosis my story included times of joy and sorrow, triumph and tragedy, but they were separate experiences from each other. It wasn’t until this diagnosis that I embraced my ability to hold both the suffering and the beauty this life has to offer at the same time.
It’s been a year and a half since diagnosis and I still find myself wearing multiple hats each day. I am part mom, part counselor, part nurse and part chemist. I’ve learned math I never knew existed before and to be honest I’m pretty good at it, which I’ve learned to hate about myself. I hate that food and carbohydrates consume my every thought. I resent terms like insulin, blood sugar, ketones, site change, bolus, A1C, and so many more, for what they have created my family dynamic to look like. Our alarm clocks are permanently set for midnight, 3:00am and 6:00am to check Keaton to make sure his blood sugar doesn’t drop too low causing him to slip into a coma or death. I live in constant fear of “Dead in the Bed”. While all this suffering does exist on a daily basis, I am also intentionally aware that I get to share this beautiful life with 4 amazing kiddos and one fabulous husband. I get to see Keaton live into his God given gifts of empathy and bravery at the young age of 4. I also get to witness the authentic compassion and love my other three kids offer. We began this journey soaked in urine, chaos and confusion. While those still remain, we are also learning to be soaked in love, compassion and grace. I’m in awe of this kid I get to call mine. I’m proud of who he is…my brave, loving, hilarious warrior. May you grow to define Type 1 Diabetes Keaton and may it NEVER define you. May we learn together how to walk through the suffering of this disease so we can fully embrace this beautiful life.
I was given the opportunity to share part of our story with Qittle and it was one of the most loving and healing things I have ever done for myself.
Loving ourselves through the process of owning our story is the bravest thing we’ll ever do. -Brene Brown
*Sunday Specials are a weekly round-up of happenings on the web-o-sphere. So enjoy your coffee while checking out what’s caught our attention.
Around the World
I am someone who tries hard to stay fairly well-informed of what is going on around the globe. Trust me when I say that this has not always been the case. Nor does it come naturally for me. I did not grow up in a family that discussed world politics or history around the dinner table. In fact, it probably wasn’t until my family decided to leave everything that was familiar and stabilizing in our micro-world and emmerse ourselves into Ugandan life for six months back in 2006, that I suddenly realized that in order to understand my own story more fully I needed to understand the larger story of the world around me. The truth is, we are all connected whether we live in daily awareness of this reality or not. Thus, my passion for listening to and holding the global narratives that cry out to my heart was born. And so I share with you the posts that caught my attention on this particular week:
Nigeria’s Stolen Girls: The New Yorker – 276 TEENAGE GIRLS were abducted from a boarding school by Islamic extremists in the middle of the night over two weeks ago. 53 of them escaped on their own. 223 remain in the hands of their captors.
Index: Justice for Rape in War – Journalist and Director of Women’s Media Center, Lauren Wolfe, remains committed to informing the world of the widespread use of rape as a weapon of war. The persistence of her voice and efforts beckon me to share her insights and the often unspoken facts of this strategy and war tactic. Are you aware of what your international sisters have and are experiencing?
A Week of Deadly Tornadoes
It has been a tragic week of deadly tornadoes here on US soil. Arkansas experienced utter devastation and destruction as multiple tornadoes indiscriminately swept through neighborhoods. My heart grieves for those impacted by the loss of lives, homes and a sense of safety and security. Stories like that of the woman pictured above are difficult to comprehend. *Photo credit: The Hodgepodge Darling
Art: Beauty in the Midst of all the Heartache
If I had a dollar for everytime I have been criticized or shamed for being too serious, or dramatic, or for being too consumed with the heartache of the world around us, I would certainly be one wealthy lady by now. It is a part of myself that has taken many years to make peace with and understand on a spiritual level. The truth is that I am trying to live in the tension of being a voice from and in and for the trenches while simultaneously being a voice from and in and for the beauty that life in the trenches illuminates. There was something about the beauty of this song and this young woman from Minnesota named Molly Kate Kestner that moved my soul this week. Her capacity to hold the tension between heartache and beauty is well beyond her years. It is her very capacity to hold this tension that leads me to believe she has known something of suffering in her own story.
Will you share with us what caught your attention or heart this week?