Surprise! Your kid has a chronic disease!

6 years ago

We are a few weeks away from the three year anniversary of the Day That Changed Everything. My husband Nick was en route to Singapore (ironically it is where he is as I write this now) on a Sunday and I took my kids, Lucas and Delilah, then aged 6 and 5, to the movies. To Lucas's disappointment, and Delilah's delight, we chose the movie, "Hannah Montana."

About ten minutes into the movie, Delilah told me she had to go potty. We went potty. Twenty minutes later she had to go again. So we went again. Meanwhile, she was enthralled by this movie and thoroughly enjoying herself. So when she asked to go the third time, my mommy radar kicked up to 'high' and I made a mental note to watch this. The rest of the night seemed pee-heavy but nothing I was too worried about. I suspected she had some type of urinary tract infection and I sent her to Pre-K as usual on Monday.  I casually called the doctor mid-morning and made an appointment to bring her in. We went straight to the pediatrician after school and two minutes after we dropped the urine sample in the little door hole the doctor strode in the exam room, writing down the address of the nearest children's hospital. "Your daughter has diabetes and she needs to go to the emergency room right now." So, like a robot, I plugged the address into my GPS and we were on our way to a large children's hospital which was about 20 miles away. Meanwhile, pickup time for my son arrived, taken care of by a friend.

Delilah looked and felt fine and I did not have any idea what diabetes was. I pictured Wilford Brimley, the oatmeal man from some awful commercial, talking about blood sugar but had no idea what the disease was or that a child could have it. The ER was empty and they saw Delilah right away after a few obligatory forms. She was put behind a curtain in the corner and with great difficulty, a wooden board, and tears from both of us, an IV was put in.  I was in complete disbelieving, ignorant shock. A doctor came in and said her blood sugar was 453, when it should be between 80-120. "She has type 1 or juvenile diabetes and your lives will never be the same. She will be insulin dependent for life."  I was sure there was a misake and it would go away with a night in the hospital. A well meaning nurse said to my shocked face, "If your kid is going to have a chronic disease, this is the one you want!"  The one I want? What just happened? My vibrant, hilarious, outspoken, dancing queen of a 5 year old daughter does NOT get a chronic disease! She has never even missed a day of pre-school!

Thankfully I was able to reach Nick in LA as he awaited his flight to Singapore. We had a two minute conversation and he turned around and got on a plane home to NY. A call to my parents, flights booked, and a sleepover for Lucas were next on the agenda. Then we were put into a hospital room.

It's actually too upsetting to describe in much more detail what we went through in the hospital. Especially since Delilah was so strong, so brave, and did not complain. She found the joy in Jell-0 (sugar free), the giant helicopter model in the hallway, the presents from friends, and the kids she met in the ward. We spent six nights in the hospital and during that time we learned how to prick her finger with something called a lancet, squeeze out a drop of blood, expertly absorb that drop of blood onto a blood glucose test strip attached to a glucose monitor, and how to read the meaning of the result. We learned about the two types of insulin, long and short acting, how to give her a shot of insulin, and how to come to face the reality that she would be having a minimum of ten finger pricks each day, and a minimum of 8 shots. Every day. For the rest of her life. Needles, shots, insulin, checking blood sugars, interpreting blood sugars, treating low or high blood sugars, and doing it all over again. For life. The amount of work, focus, pain, and relentlessness of the ongoing daily hourly minute-by-minute monitoring was and still is impossible to absorb. There are many days when we prick her finger more than twenty times. The amount of 'stuff' we require is, well, mountainous. Almost three years later, we are still in a bit of shock.

The first thing I mourned for her was a loss of spontaneity. I imagined backpacking trips to Europe lost, last-minute trips suspended, all-nighters forbidden. I was afraid this would crush her spirit, her power, her lust for life. Thank God I was wrong. Diabetes can't take her soul away from her. But it sure makes her day-to-day life a gigantic pain in the ass. And if I'm honest, mine too.

Back then at age five, she was just getting her independence. In the fall she would begin full-day kindergarten, and playdates were just starting to be drop-offs at a friend's house. Wtih diabetes, there is no independence. She always needs to be with someone who can care for her, check and interpret her blood sugars, administer insulin, have emergency supplies on hand, and watch her pretty much like a hawk. Enter Mommy. Mommy is everywhere. Playdates? Great! Let's have it at our house! A field trip? Great! I'll come! Dance class? I'm there in the window! A sleepover? Nah.Well, OK. But again, at our house. We were, and for the most part, still are, attached at the hip. Don't get me wrong, I love every bit of my daughter and truly enjoy being around her. But the timing of this was just not the natural order of things. At times, we clashed and still do.

How has Delilah dealt with this over her three years of diabetes? She is resolved, mostly accepting, and brave as hell. She doesn't believe she will have diabetes forever and neither can I. We work hard to raise money for our new charity of choice, the Juvenile Diabetes Research Foundation. We are both frustrated by the daily relentlessness of the Beast, but our whole family is mostly accepting, mentally healthy, and hopeful.

 

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