On Friday June 29,
2012 H was diagnosed with Type 1 Diabetes, but her Diabetic story really
started before that.
H has been potty
trained since she was a little over 2 ½ years old, but always had problems
staying dry at night. I tried to chalk it up to her being such a heavy sleeper,
especially because her doctors weren’t concerned. So, we continued with our
normal routine of putting a pull up on her each night before she went to sleep.
At her 5th
year check up, I asked the doctors again about her bed wetting because the
problem had gotten worse. H started waking us up in the middle of the night
because she had wet through her pull ups. The doctors still didn’t show concern
and told me that it was quite normal for children to wet the bed until 8 years
of age.
The worry wouldn’t
go away though, no matter how hard I tried. How could a 5 year old child that
pees through her pull up and wetting pads twice per night, even after getting cut
off from any liquids after 6:30pm, EVERY SINGLE NIGHT, be considered normal? None
of the other parents I’d talked to had been through anything like this
before.
So, for a month and
a half more, I was woken up in the middle of the night, EVERY SINGLE NIGHT, to
change her wetting pad, her sheets, her blankets, her water proof mattress pad
and help her change her pull up. Every
single night.
My husband and I
talked about different ways to get her to stop wetting the bed at night, but
nothing helped. We weren’t as patient with her as we could have been in the
beginning; we yelled and scolded her for not getting up to go. We even started
getting her up during the night to go. We would set an alarm and I would go and
wake her, which took forever, and drag her half a wake to the bathroom only to
be woken up again later to change the sheets. It was exhausting and we finally
figured out that she couldn’t control it. Something else was wrong, but what?
We stopped scolding
and finally accepted that she might do this for years to come and there was
nothing anyone could do about it. It
wasn’t easy, but what else could we do? Her face, when she came in to tell me
she wet the bed, was the saddest, most embarrassed face I had ever seen on my
child. She was more upset then we were that she couldn’t hold it in at night.
Things continued
pretty normally until the weeks leading up to H’s diagnosis. At that point, she
was home from school for summer and I was busy running around trying to pack 3
little girls (5, 2, and 8 months), a husband, and a dog for a 9-day trip back
home to Kansas City. We were getting all three girls baptized, my husband’s
sister was coming home from teaching abroad in Mexico and we had things planned
for every other day of our trip as well.
During that time H
became increasingly tired, was constantly thirsty, lost weight and every time
she ate would act strange afterwards.
She hadn’t taken naps in months, but during the other girls’ naptime,
she would pass out on the couch for several hours, especially after she ate.
She had always been a really good eater and continued to be, but would say no
to dessert. Whose child are you? We LOVE dessert in this family! She told me it
made her teeth and tummy hurt to eat sweet stuff.
She would also
become very sluggish after meals. Her checks would turn bright red, like she
had been running forever, her eyes would be half closed, and you couldn’t talk
to her about anything important because she wouldn’t be able to understand you
properly. My husband called it The Zombie Effect.
I didn’t notice the
weight loss at first, H is the kind of kid that plumps up a bit for a while and
then shoots up really tall afterwards. So, naturally I thought it was something
along those lines. I didn’t notice anything out of the ordinary until one day
she put on her favorite summer dress, one that she wore every week for as long
as she could fit into it. I remember
helping her put that dress on, expecting it to look like it always looked, a
little tight in the middle, but perfect everywhere else. Instead my baby girl was
swimming in that dress. I immediately took her upstairs, measured her against the
“wall of growth” (a wall in my 2nd daughter’s closet that I mark the
girls height on every 6 months) Sure enough she had grown, but not enough in a
month to cause such a change so I made her stand on my scale and to my horror,
she had lost 10 pounds in about a month and a half. That was the day Hallie got diagnosed and the
day our lives became forever altered.
Seeing that change
scared me to the core. I called the doctor first; they said that they could get
her in after our trip (in 9 days) and to not worry too much until then. Next I
called my husband freaking out; he tried to calm me down and said he would try
to be home early. In a panic, I Googled her symptoms and after I hit enter the
word DIABETES popped up all over the screen in front of me. I laughed at myself
because I was NOT going to be the mom that freaks out because of a Google
search and rushes her kid to the ER only to be laughed off as a crazy person.
So, I called my husband back. He married me (crazy person that he is) knowing
how freaked out I get by little things that happen to our kids. So I knew he
would be able to talk me off the ledge. But instead of talking me off, he
joined me on it.
As I waited
impatiently for my husband to get home, I fed the kid’s dinner and got the van
packed so all we had to do when he got home was leave for our vacation. H ate
as usual, but declined dessert just like she had all week. When K got home 20
minutes later, she was sitting in her chair staring straight ahead. He tried to
say hi, gave her a kiss and asked about her day, but she didn’t respond. “Zombie
Effect” he said as he looked at me. He didn’t have to say anything else; we
both knew something was wrong. Later in the car he got curious and started calling
friends he knew with Diabetes. After that, his curiosity got the best of him
and he gave her a muffin to see how she would feel after. Two bites in our
daughter almost passed out from the sugar and that is when K started to speed
the rest of the way to my mother’s house in Kansas City.
We dropped the two
smaller girls and the dog off with barely two words to my family. My mother
could handle them and we had to get to the ER as soon as possible. I sat in the
back with Hallie and held her, I cried as little as I could, but the emotions
were too hard to keep all the stray tears at bay.
A half hour later
we were being given the news that our daughter did indeed have Type 1 Diabetes
and that their children’s hospital location wasn’t suited for her needs. They
needed to transfer her, by ambulance, to the bigger Children’s Hospital
downtown. At this point, I had to make
the calls. The one to my mother was pretty bad; I was barely audible as I gave
her news. She did the protective mother thing and simply said that we would
handle whatever came our way and that I needed to be strong for my baby. I
continued by texting my siblings, my husband’s family, my father and H’s
paternal grandmother. The last call I made was to H’s biological father, That
was the worst one of all.
Our ambulance ride
was pretty hard to bear, but the paramedics were amazing. Once the ambulance
arrived, two paramedics walked into our room. At the time, H was terrified of
men. So, when a 6 foot something, African American man walked up to her and
expected to shake her hand and talk to her, she gripped me even tighter. I was
worried she wouldn’t let me go, but after just a few minutes, she was ready to
ride anywhere with this funny, cool guy. They made me ride in the front seat
with the driver, while the male paramedic worked to get H hydrated. My husband
drove the van back to my mothers to pick up stuff we would need for the night
and then met us at the hospital. The female
driver tried to make small talk to take my mind off of my crying baby in the
back, but not much could distract me. Through the small window separating the
front from the back, I spoke words of encouragement to H. I hoped they would
help her get through the pain but it turns out, at that moment she didn’t need
me. The paramedic was distracting her and making her laugh through her tears
and at the end of the ambulance ride, she wouldn’t let go of his hand.
Our next stop was
the ER; the doctors got caught up with her case and tried again, to get an IV
in her arm. After what seemed like hours, they were finally able to find a
vein. They explained that she was so dehydrated that it was difficult to get
her stuck. That seemed odd to me, because the last couple of months she had
chugged water like she couldn’t get enough. They explained to me that since her
body wasn’t creating enough insulin to break up the sugars, few nutrients and
hydration were getting to where they needed to go. After that, they tried to
get a reading on her sugar levels and did a series of other tests. Her numbers
were so high that their meters couldn’t get an accurate reading. Since her levels
were so off the charts, they decided that she needed to be admitted to the PICU
(Pediatric Intensive Care Unit).
We spent the next
48 hours there. She couldn’t eat or drink anything until her levels were stable,
so since she couldn’t eat or drink, neither did I. I slept in her bed in the PICU, held her hand
and kissed her tears as they poked and prodded at her. She was so scared and so
little, I hated what she had to go through and every time they came in my heart
broke that much more for her. Visitors
were limited to one at a time, it would have been two, but I refused to leave
her.
K came and went as
much as he could, he had the other two girls to look after. Even though my
mother and other family members stepped in he seemed to know that since I
wouldn’t leave H’s side he would have to play Mommy and Daddy for a while.
I remember walking
through the halls of the PICU, focusing on the floor as I walked to the
bathroom and back to H’s room. I had learned my lesson the first time, when K
forgot to warn me not to look into other children’s rooms. I saw things that
would give me nightmares for years to come. Children with tubs coming in and
out of their bodies, sick little beings that barely looked human at all. It was
so much worse then I could ever describe, the pain in their parents faces were
the worst of all. Right then and there, I was thankful my child had Diabetes.
It was the first time, but not the last that I would be thankful for that.
After two days in
the PICU, H’s numbers were where they needed to be. She had to go to the main
floor of the hospital for a couple more days, but we could have more visitors!
Things got harder
and easier for us. H hated her shots and getting her blood taken, but we were
learning about the disease and the ways to help make this whole thing easier
for her. We took 3 classes before she was released from the hospital and 2 more
in the months to come. Our friends and family jumped in without missing a beat.
They brought presents, meals, fun activities, and watched our children for us.
They were lifesavers, as were the people at the hospital. We were so blessed to
have such an amazing tool at our fingertips whenever we needed help. The nurses
brought movies and games for her to keep her busy and always explained things
to H, not just to us. Many of the staff actually had Diabetes themselves and
never got tired of the countless questions we asked them.
Finally, after 5
days in the hospital, H could go home. It was exciting and terrifying all at once.
We were armed with all the knowledge and tools we would need, but somehow we
knew that the road ahead would not be an easy one. There was so much to
remember and so much to do, how could this ever get easy? But it did. Time
passed and routines were made. We called the doctors many times in the first
couple weeks, but after that learned her body and how to maintain her levels.
I think the hardest
thing for me to remember is that H’s body is not a machine. I know that sounds
silly, but if you think about it, it might make sense. We take her blood sugar
and get a number. Based on that number and the amount of carbs she will be
eating, you calculate how many units of insulin to give her. Then, when it’s
time to check her blood sugar again, she should be within range, right?
Sometimes that’s true, other times she’s really high or really low. I blamed
myself for every high and every low, thought I was doing something wrong. I
used to get so frustrated and felt like I could never get this whole process
right. Then it dawned on me. Her body isn’t a computer that you put your
calculations in to and everything runs smoothly. Her body gets sick, runs
around, plays and uses different amounts of effort. So depending on what her
body was doing in-between those blood sugar tests makes a difference on how her
levels will be later. I can’t control her body, I can’t make her always be in
range. She will go high and she will go low, but I can’t fix that perfectly
every time, no one can.
Some days are hard,
some days are easier, but I am thankful every day. It doesn’t matter how strong
or weak I feel, I can be thankful that My H is still with me and is not only
managing her Diabetes but thriving!
H on her 6th Birthday
11 months and 13 days
after being Diagnosed
Such a good mommy and such a brave little girl...
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