This was written about 6 weeks after Henry was diagnosed with Type 1 Diabetes. I think I blocked out a lot of things that were hard and/or I just have been so stressed and busy it's hard to remember everything. But this is what I do remember, and this is what I wrote:
May 13, 2016
I never thought I’d be here. Holding my child down, a
syringe in hand, trying to give him a shot in his bum. I never thought I’d be
waking him up at two in the morning to check his blood, to determine whether or
not I needed to make him drink a cup of juice. When I first held Henry in my
arms, my perfect, thick lipped, blue-eyed baby, I never thought I would be
treating him for Type 1 Diabetes at the age of three.
We noticed things weren’t right around his birthday. He’d
finally gotten over a really nasty virus: coughing, congestion, runny nose,
fevers, the whole nine yards. It had been almost two weeks of that mess and at
his birthday party, I was still wiping his nose every two minutes. We kept
Kleenex in business that month. When those symptoms went away, however, he
still wasn’t getting better. I started
to notice him struggling to be my Henry.
He was tired all the time. Instead of the immediate: “Let’s
play dinosaurs!” in the morning, it was “Mama, please hold me. Want to watch
something?” Instead of running up and down the hill in the backyard, it was
“Mama, I just want a rest.” He sat on the couch much of the day, curled up in
his blankets, clutching his stuffed bus, begging to watch Cars again. Just something he could do to sit down.
He had anxiety attacks over silly things. Like walking down
the stairs alone or going to bed. He had meltdowns over which sippy cup I gave
him.
Eating became even more of a struggle. He’s been picky for
almost a year, but things got to a new low. Suddenly he didn’t even want his
staples. He said no to French Fries for heaven’s sake! In the morning, he
didn’t want juice anymore: “just some water, please.” I watched him drink 24
ounces before 11 o’clock, and then several cups more before nap time.
Instead of making it through the night, Derek and I were
changing wet sheets two, three, four times before he woke up with another set
of wet pajamas at 8:30, even though we were getting him up several times to
pee. He was using the bathroom almost constantly. Every ten minutes, he’d run
in there and go. I mean really go—lots of pee, he would say. I pegged it on the
amount of water he was drinking, and tried to just brush it off.
I took him to the doctor several times. Of course all I knew
to identify as “symptoms” was the lethargy and other little signs of what I
thought could be a virus (runny nose, etc). I set up a monthly check up to look
at his diet, as he was losing weight so rapidly. I could only figure it was
because he wasn’t eating well.
Days before his diagnosis, he started complaining that his
neck hurt. He couldn’t turn his head to the right. I took him in, they said
“give him ibuprofen every 6 hours. If it’s still bad tomorrow, bring him back
in.” It was still bad, I took him in the next day, Derek with me. They asked
for x-rays. We held him down, screaming, on the table as we took x-rays of his
back and neck. It took both me and Derek to hold him still and 45 minutes to
finally get what we needed.
He screamed and cried for almost two hours after we got
home. Terrified and hurting. He fell asleep crying in Derek’s arms.
Henry’s neck got better, and I thought that was it. But he
was still losing weight, quickly. Everyone noticed. Friends, family. They
started asking me about him, “is he ok?” “Is he eating?” Nursery leaders and
neighbors started mentioning how different he was. Something we, his family,
had been noticing for weeks. But hearing other people say it…
And then last Thursday, I held him on my lap for almost four
hours, rubbing his back as he puked over and over again. He cried, “I need to throw
up!” and would lean over the bowl for several minutes before finally getting a
bit of bile up. We’d then hurry over to the sink, rinse his mouth, and try to
rest before the repeat.
I was done. Time to take him to the Dr. and DEMAND some
answers. I knew something big was happening. I had spent dozens of sleepless
nights crying because I just couldn’t figure out what was wrong, and I KNEW
something was seriously wrong.
The Spirit was certainly with me. I could feel Him prompting
me, tell me that all was not well. That this really was serious. After that
evening of vomiting, His promptings got even stronger. “Take him to the Dr. no
matter what,” He seemed to say. So the next morning, I called and asked for the
soonest appointment I could get with Dr. Harrison. Luckily, they had a
cancellation and I could get in at 11:20. I took Johnny to my sister’s house,
thinking it would just be for the appointment. But I felt like I needed my mom
with me. Another prompting.
So, the three of us went to the Dr. Right as we walked in, I
watched Dr. Harrison rush out of the office to go deliver a baby. Great. I had
really wanted to see her, not one of the nurse practitioners. They asked me if
I wanted to wait. “No,” the spirit said. “Now.” I asked if Melanie, Henry’s favorite
NP, was available. She made room.
I began listing absolutely everything that I felt was
un-Henry-like. The bed wetting, the anxiety, the sleepiness, the drinking, the
weight loss, everything I had been crying over for weeks. My throat started
getting tight. Keep it together, Mama.
When Melanie came in after I talked to the nurse, she said:
“this sounds to me like we need a blood test. And if it says what I think it’s
going to say, then we’re going to send you right across the street to the
hospital to have him tested for diabetes.”
After a poke, some tears on Henry’s part, the nurse turned
and said: “309.”
Melanie smiled at me. “Ok. It looks like we’re heading
across the street.”
I bawled. I did. Right there, holding Henry in my lap with
his blanket wrapped around him. I buried my face in his hair and started
sobbing. Melanie came over and put her arms around us, my Mom rubbed my arm.
“Stop it Mama, it’s ok.” Henry said, pushing me away. “Stop crying Mama.” I
took a deep breath. “Ok, baby, I’m ok.”
But I wasn’t, really. Everything I had imagined Henry doing
seemed to be covered with a dark blanket. Of course he could still do those
things: be a star student, play football, have tons of friends, go on Boy Scout
camping trips, but all of them were shadowed by Diabetes now. My boy giving
himself shots, perhaps being embarrassed by it, hiding it in the locker room. Having
to explain to the other kids. Forgetting to take insulin and getting sick.
Everything was now covered with Diabetes.
I took a deep breath and Melanie left the room to call the
Pediatric Unit at Utah Valley Regional Medical Center: the same hospital where
Henry was born. The nurse got me a drink of water, and Mom held my hand. I
called Derek but Mom had to talk to him; I couldn’t speak without crying. He
immediately left work and headed to the hospital to meet us.
When Melanie came back, Mom took Henry out in the hallway to
walk around for a minute so I could get it together. I don’t remember what
Melanie said to me, other than something about Henry living a normal life. She
said we’d probably be in the hospital two or three days. Henry and Mom came
back in.
“Henry,” I said, taking him in my arms and looking him the
eyes. “We’re going to go on a new adventure. Would you like that?” I sucked in
my breath. “You know how you haven’t been feeling good?”
“Yeah.”
“Well, we’re going to go over to the hospital, you and Mama
and Nana, and we’re going to get you feeling better. Ok?”
“Ok, and blankie can come?”
“Of course, blankie can come. And Daddy is going to come
home from work and be with us, too. Ok?”
“Ok, Mama. But don’t cry again.”
Derek arrived as I was checking Henry in. Henry reached for
his Daddy, and I lost it again. I was so glad my mom was still with us, she
gave me a huge hug. “What can I do to help you?”
“Please, please take care of Johnny,” I said. “That’s all I
need, is to know that he’s ok.” She nodded. I gave her a list of things to bring
for Henry, too.
We finally got Henry all checked in, and Mom left to go get
John from Sam’s house. A lot of phone calls had happened in between this. She
had called my Dad, her visiting teachers (who called mine), and she’d called
Sam to let her know, too. Sam called my siblings. I just couldn’t even think
about any of that stuff. But I’m glad she did. Derek called his parents at some
point, too.
We went up to the Pediatric floor, the 4th floor,
and met Dr. Beverly, our admitting physician. They got Henry assigned to a room,
454. It had Captain America and Iron Man painted on the windows. Henry had no
idea who they were, but I felt grateful to have some superheroes there; we
would need them, I thought.
Henry was ok with his vitals being taken (except blood
pressure, I asked them to hold off on that because I knew it would make him
hysterical) and sitting on the bed. But he kept asking when we could go home.
That didn’t stop for the next 48 hours. We had to wait a while until they were
ready to take blood, and Henry wasn’t allowed to eat or drink. Poor thing, he
was SO thirsty (something I learned was a sign of high blood sugar). We finally
talked to Dr. Beverly who said he could have some water. Thank goodness.
I couldn't help but feel grateful and proud when Dr. Beverly, and the other physicians throughout our stay, told us how early we had caught this and that we had saved Henry's life. While the vomiting was a sign of ADK (Advanced Diabetic Ketoacidosis, severe rise in blood sugar), they said most children don't get brought in until they're already comatose. I can't imagine. While we'd had a hard day, I was so grateful things hadn't reached that level.
The hardest part of our first day, and our whole stay really, was the IV. It was late
afternoon before we finally got it done. We went into a little triage room,
just next to his room. The nurses said it’s good to separate the scary things
from the room where he’s sleeping. Makes sense. There were a few nurses, with
all the stuff ready waiting for us and a lady who introduced herself as someone
who would try to help distract Henry. She had bubbles games, etc. I thought
“good luck with that” but hey, anything could help.
I held Henry on my lap, chest to chest. I held his right arm
down, tight against our bodies, and the nurses took his left hand. And then he
screamed. Screamed and cried and tried to get away for what seemed like
forever, but, according to the clock, was only 7 minutes. The nurses put a
needle in and drew blood. Several vials. Then they put another in for his IV.
His poor little hand. They had to strap it down to a little foam thing so he
wouldn’t clench his fist and push the needle out. They wrapped that all up and
put a sock over the whole mess so he wouldn’t try and take it off.
I felt awful, holding him still while they hurt him. I know
they gave him a little local anesthesia, but I also know it still hurt and that
he was scared. Oh, so scared. And that was probably the worst part. That me
holding him, couldn’t stop the scary. I couldn’t take him home and wrap him up
in his blanket and make everything go away.
Once that was over, things got better. They got him on an IV
to get him hydrated, and eventually they let him eat. We got him French Fries.
I don’t remember when he had his first bit of insulin, but I
know it was that evening sometime. Maybe it was even with his meals. I don’t
remember when we first started learning out to do it; that whole weekend was
such a whirlwind of education, learning about diabetes, learning how to give
shots, learning about blood sugar levels, learning how to count carbs, learning
about free foods, learning about what to do if he was really low or really
high. I don’t remember a whole lot of when things happened, but I know they
did.
Derek and I wanted to start doing things ourselves right
away. The next day, we were already giving him shots. We were checking his
blood sugar ourselves. We were counting the carbs in what he ate and figuring
out dosages. That felt good: to be empowered a little bit.
But most of those 48 hours were holding Henry. We tried to
explain what was going on, at least a little bit. We watched Cars, Cars 2, and Mater’s Tales. A few times. We read lots of stories. I helped him
to the bathroom with his drip thing in tow (that was annoying). I held him
while he took naps. We cuddled up together on the same bed both nights, my arms
around him as he cried, telling me he didn’t like sleepovers at the hospital.
There were good things, though. Lots of little hard things,
but some great big awesome things. Within 24 hours of being on insulin, Henry
already started to act like himself. He felt like doing something again. He
wanted to go on walks throughout the 4th floor. We got a wagon from
the nurse, and he wanted to walk and walk. He LOVED riding in it! We put his
blankets all around him, got him a diet Root Beer, and walked. He loved seeing
the new babies in the nursery and looking at all the different paintings on the
windows (especially the ones with Mickey and Minnie and the Minions). Saturday
night, we walked for almost an hour and half. Even when Papa and Uncle Dallon
came to visit, that’s all he wanted to do. It was such a relief—to see that
this was working, that things were getting better.
We tried to make everything fun or at least exciting and
special. When we received his kit with the blood glucose checker and stuff, we
talked to him about how special it was. How he was a special kid. He loved
putting the different colored covers on the “checker” as we called it. He
cocked and fired the “poker” a million times. It was a small bright spot for
him in what I’m sure was a lot of scary.
We had friends and family send balloons and toys. Nana
brought him a set of Cars books and a
Mickey with a ToonCar. Grandpa came to visit, so did Jared, Ariel, Sam, Dallon, Nana and Papa. All these things helped make the stay easier for him,
which made it a lot easier for us.
 |
| playing with the covers |
 |
| pancakes for breakfast both days. |
The next two pictures are from our first day at the hospital to our last. Just look at the difference in Henry as he sits in that wagon!
There’s not much more to tell about our hospital stay. On
Sunday, when we were finally released, I felt such a relief. I was scared,
definitely, to have all this in our hands. Could I monitor everything on my
own? Could I do this? Six weeks later, I still feel a little scared some days.
We’ve met with an endocrinologist, we’ve talked to the diabetic educator, and
we’ve been told we’re some of the fastest learning/most capable parents they’ve
encountered with a newly diagnosed kid. That feels great, but I still feel like
things are out of control some times.
We’ve had nights where I’ve had to get up with Henry and
hold him in the rocking chair while he ate a snack. I’ve had to force him awake
to take a few sips of apple juice because his blood sugar has dropped so much.
I’ve had to hold him down, practically sitting on him, to give him his shots. I
hate it. I think I always will. I’ve had to remind him that if he has certain
snacks, he’ll have to have some insulin. I’ve seen him weigh the options in his
mind. Big choices for such a little boy. Just a 3-year-old.
It’s been hard. It’s been a roller coaster some times. Even
sometimes, it’s been fairly easy. We’ve had so many people come out of the
woodwork to help us. People offering to take the kids, people bringing us
meals, people helping me. It’s been amazing.
But the most amazing? Oh, the MOST AMAZING. Is Henry. His
bravery. His desire to get better. The way he holds his little finger out so I can
check his blood. And the best part: he’s back.
Running around. Giggling. His curiosity is back. He wants to
play. He wants to do. He wants to help. He wants to eat. All the things that
were missing, they’re back. Oh, and he’s not wetting the bed either. He stands
at his door in the morning, whisper yelling “Mommy! I want to play! Time to get
up!”
On the hard days, I go to bed exhausted but unable to sleep
from the worry. I try and tell myself that we’re doing fine, we’ve taken
control, and we’re going to keep moving forward. But it’s still hard.
There are
many nights when I go to bed crying, wishing and hoping that I’ll wake up the
next morning and it will be gone. That the needles, the pokes, the blood on
Henry’s fingers, the bruises from the needles, the smell of insulin on my
fingers will be gone.
On those nights, I turn over and squeeze Derek and think
about our forever family. The covenants we have made. And, most importantly,
the sacrifice of our Savior. The beautiful reality that one day, all those
things will be gone. That Diabetes will be gone from my Henry. In the
resurrection, his perfect, beautiful body will finally match his brave, beautiful spirit.
And then I take a deep breath and say the prayer I’ve already said a million
times: the prayer of thanks for sending the Holy Ghost to take us back to the
doctor. The prayer of thanks for family who have supported and helped us. The
prayer of thanks for insulin and doctors and modern medicine. The prayer of
thanks for Henry.
