The Diagnosis

There have been a few times in my life when I’ve left the house with one life, and returned with another. Perhaps most notably was when we left for Christmas vacation pregnant, and returned with a suitcase full of maternity clothes but no longer any baby coming. All those hopes and dreams were left in Texas when we returned home to California. It was a similar scenario when our daughter was diagnosed with type 1 diabetes on April 30^th of this year; we left the house knowing something was wrong; that was no surprise. But we never could have guessed that we would return home with a chronic and life-threatening illness for our daughter to contend with. Writing about Ada’s diagnosis day and the weeks leading up to it is so difficult still six months later. I’d rather be doing just about anything else other than revisiting all the emotions from that day, recording it in black and white, spelling out my failures for all to read. We have a whole month’s worth of pictures where Ada looks thin, listless, and so, so sick. When I look at them, I’m sucked back into a vortex of regrets. I hate looking at those pictures, and confronting my denial at the time. I can’t help but think of the “what ifs.” She was literally starving before our eyes; she could have died.

If you want to read a more detailed list of all the symptoms we recognized as well as ones we missed, click here. For now, I’m going to give a summary and skip to the part of the story where we realized she was sick.

For weeks we’d been questioning what was going on with her. We thought she had just gone through a growth spurt when all the sudden she looked thin and gangly. About a week later, we realized she was not herself. We worried about her mental health because we couldn’t get her interested in her normal activities and discussed calling a psychologist or her pediatrician. At that point, we didn’t realize that she was actually tired rather than depressed, and had not just gone through a growth spurt, but instead was slowly wasting away right in front of us.

There were some symptoms like flushed skin and the cold hands that alarmed me that Aaron largely dismissed. On the other hand, he wanted to bring her in sooner because of how sad and off she seemed; I dug my heels in not wanting to get a psychologist involved just yet, sure that she would snap out of it soon. I really think I was scared of what we might find out. This failure to get her help sooner haunts me, but praise God, no permanent damage was done from our shortcomings.

On Sunday, April 28^th, all the puzzle pieces fell into place, and we realized just how sick she was. She had looked skinny, but all the sudden looked skeletal. We weighed her and realized she’d lost seven pounds since her recent check up; at that point we realized that what we thought was depression or disinterest was actually fatigue that she couldn’t articulate. We of course called the doctor immediately, and that’s when other people’s failures came into play as well. Right after we weighed Ada on that fateful Sunday, we phoned a nurse that insisted that if she was coherent and walking, her weight loss didn’t warrant immediate attention, but could wait until a doctor’s appointment in two days’ time.

For me, there were so many tears between the 28^th and the 30^th. I remember crying in bed, and Aaron telling me she’d be okay. Her health continued to decline in those two days; confusion and severe exhaustion were added to the list of symptoms. I checked on her almost every hour both Sunday and Monday night, alarmed at her steep decline; I would have climbed in her bunk bed with her if I wasn’t worried about its ability to hold my weight. I wondered how we missed the weight loss, but all I can say is that it was very gradual for a long time as opposed to the pounds a day she was losing those last few days. I remember prepping Ada for her appointment and the possibility of bloodwork. I told her that she’d be okay, but that we couldn’t continue on like this. I remember her saying, “I know,” and the heart break I felt in that moment. I hoped so much that it was a parasite that our new puppy gave her; that would have been such a simple fix whereas any other explanation I could think of was terrifying.

Tuesday morning finally arrived, and I am pretty sure I told Aaron that morning that I gave it a 50 percent chance that the doctor would send us on to the hospital to be admitted. Clinging to the hope that it was something simple, I imagined that a day of IV fluids and a couple weeks of medication would have her on the road to recovery in no time.

I love our doctor. He was very thorough, and told us what tests he would run. Aaron was there for as much of the appointment as he could be, working around Cora’s school drop off and a meeting he couldn’t get out of. I was the only one there for the doctor’s questions, and I could tell from the questions he asked that he thought it was either diabetes or leukemia. All hope that it was something simple was quickly fading, and I knew our lives were about to change. Aaron was there for the majority of the tests, and his presence was very calming. When he left for his meeting, it wasn’t long after that we were told that the results of the tests indicated type one diabetes. I started to tear up, but could tell how scared Ada was, so I got myself together pretty quickly. We were given the choice to get an ambulance ride to the hospital or to quickly pack a bag and leave within an hour. Since I had Miles with me too, I chose the latter.

It’s amazing what you can do when you have no choice. I had a timeline to follow, so emotions would have to wait. I made the necessary calls, secured childcare, and packed a bag. When Ada dissolved into tears, we cried and prayed together. Aaron met us at the hospital, and the three of us were very, very quiet; there was so much to absorb. It wasn’t long before she was taken back, and diabetes was confirmed. The day of her diagnosis was such a long, and frightening day. We went from the doctor’s office to the ER, and then took an ambulance to another hospital where she was admitted to the pediatric ICU. Ada, who was terrified of needles before diagnosis, had to have an IV, and didn’t even flinch. All the fight had left her, and she was just sad and scared. I saw my husband cry for the first time in my life that day. I cried too, but largely saved it for the elevator or walks to the car; I had to be strong for Ada.

We were supposed to be in the hospital for 4 days, largely to educate us on how to care for a type one diabetic. On the second day, they moved her to a regular room in pediatric endocrinology. By the end of day 2, she’d had her first insulin shot, and was a champ. The poor girl learned that she’d have a minimum of four shots a day for the foreseeable future. She learned there was no cure, but that she’d have a long life, and still get to be a normal kid. As smart as she is, it was hard to shield her from the very scary aspects of the disease, and we struggled to calm her fears and reassure her that she’d be okay and healthy again soon. We started to see her health return even in the hospital. When she asked to read her book, we saw that as a good sign after days of apathy. Our little girl was slowly coming back to us.

Learning the steps to carb counting and injections wasn’t too bad. The nurses all had a lot of confidence in us, and even let us out a day early. Of course, you only cover the bare minimum in the hospital. You don’t realize until you get home how many factors there are that affect blood sugar or how difficult it is to keep in normal range. You can’t know until you experience it how often you’ll need to change carb ratios, how sensitive newly diagnosed kids can be to carbs and insulin, and how you can do everything right, and the blood sugar still doesn’t do what it should.

My mother had flown in the day after diagnosis and picked up my kids from a friend’s house. When we got home on Thursday, we were greeted by two very excited kids and a very relieved Gigi.

We were told recovery would be quick, but it took a full month before she was back to her old self.  Type 1 diabetes is a hard diagnosis to manage, and it requires constant care and supervision. I hate that it was her instead of me, and I hate that there’s a piece of her childhood that’s been robbed from her as she now has some very grown up responsibilities and concerns. I wish people knew that there are just some days that she doesn’t feel well, and it’s not her fault. But a lot of days, we’re still just us, and not that focused on the diabetes. We take so much joy in Ada’s silly antics or simple things like seeing her run, things we missed for so long and didn’t even realize. We don’t take any of our kids’ health for granted. While I wouldn’t call the diabetes a blessing, the second chance we were given is. Her dad and I are Ada’s biggest cheerleaders. I can’t wait to see what that girl does with her life; I’m so glad I get to witness it.