Monday, November 4, 2013

I live with juvenile diabetes everyday, but....a guest post from Marlo from Nightdreams and Daymares

I live with juvenile diabetes everyday. But, I do not check my child’s sugars.

I live with juvenile diabetes everyday. But, I do not wake up to do 3 a.m. checks.

I live with juvenile diabetes everyday. But, I so not have to worry about keeping insulin cool.

I live with juvenile diabetes everyday. But, I do not have to worry about keeping pump supplies on hand.

I live with juvenile diabetes everyday. But, I sleep through the night without worrying if my child will be awake in the morning. Because she is already dead. You read that correctly. The last time I spoke to my daughter was September 15, 2011.


Sarah was diagnosed with diabetes January 6, 2005. She had just turned 8. It was the first week back to school after Christmas vacation. She had been getting up in the middle of the night and having accidents on just in front of the bathroom door. Early afternoon, I called her father and told him that I thought she might have a bladder infection or something of the nature. And, since it was Thursday and the doctor’s office closed at noon the next day, I wondered if we should go ahead and get her an appointment. We decided that if she did it again that night that we would take her in the morning.

That was until I received a phone call from Sarah’s teacher. She fell asleep standing up in the hall. Granted the kids had been tired most of the week, but this was Thursday. Something was off. I told her I was going to call the doctor and I would get back in touch with the school. I called the doctor’s office and explained what was going on.

“Get her here NOW.” It is incredibly frightening to hear a nurse be that adamant. I went to pick her up from school and take her to the office. They tried to draw her blood. It did not go well. Normally, she did not like needles. But, this wasn’t like her. Her father was about three minutes away. So, I called him and he came running. It took him laying over her 8 year old body talking her down, me holding down her feet and a nurse holding down her arm so that the second nurse could draw the blood.

After a short wait, the doctor came in and broke the news to us. We took it very calmly. Our closest endocrinologist was in Abilene, where I worked. It was twenty-five miles of so from home and the hospital. And, he would out of town until the following Monday. So, she was being admitted to our local hospital until we could get her sugar down to a more manageable number. She was in the mid-six hundreds at the time. By then, the other doctor would be back and we could transfer her to the children’s wing in Abilene. Up until this time, I was doing well.

It suddenly occurred to me that I needed to call my place of work and let them know what was going on. And, that I wasn’t sure when I would be back. I was blessed to have wonderful bosses that encouraged and expected you to put your family first. I did fine until I called them. The phones would go to voicemail at 5:30 and it was around 5:25. I dialed calmly. But, as soon as the girl answered the phone, I went into a tail spin. I was not making any sense. She put me on hold and transferred me to my boss. It gave me a moment to get myself together. “Sarah has diabetes.” I got the words out. My life was never the same.

Over the next seven years or so, we went through all sorts of trials and tribulations. There were the fights to get her to eat when she was sick. (When you are diabetic, you don’t have the option of letting your child be nauseated. It is life threatening.) There were the last minute realizations that you are down to your last syringe at 8:45. And, you are 20 minutes from the nearest pharmacy. So, you start digging in the cabinets while calling all of the grandparents to see if they have left at their house. The debating over whether to go trick or treating or not, since she can not just gorge on her candy like other kids. The not wanting to let her go to sleep overs for fear that her sugars would drop.

Not every diabetic reacts the same way to highs and lows. When he sugar would drop really fast, Sarah would have seizures. Her first one happened at 5 in the morning. I remember the morning very clearly. Her little brother had come into our room at 4:30 in the morning saying he couldn’t sleep. I sent him back to lie down. Half an hour later, I heard him walking back down the hall. I decided to go take him back to bed and maybe lay down with him or a bit. But, I realized that was not what I was hearing. I looked in Sarah’s room. She was having a full blown seizure. She had a day bed and her right arm was stiff and she was hitting her bed and wall with it. I do not think I have ever been so scared in my life. We rushed her to the ER. The guess is that her sugar went to somewhere in the mid-twenties. I rode in the ambulance to the hospital in Abilene, again. Her insulin was adjusted and we moved on. But, when her sugar would plummet, she would have a seizure. And, the oddest things would cause it to drop. Bad weather would even do it since she would get rather freaked out by it.

There is something upsetting about being calm when your child has a seizure. After the first couple, it becomes habit. Make sure they aren’t hurting themselves, check their sugar and get sugar in their system. It happened at the most inconvenient times, too. She had one in the computer lab at school. Not long after her father and I separated, he called from our local Walmart because she had one in the front of the store. The employees and fellow customers were awesome. But, yeah, we were “used” to seizures.

We will never know why she had her last one. All anyone can figure is that it may have been a result of having so many before. Her sugar did not drop. And, her heart had an arrhythmia. She never woke up. I received a call from her step mother that they had to call the ambulance and that they had to do CPR. Somehow, it just didn’t occur to me that she was dead. In hindsight, I should have known. But, it didn’t. Sarah’s father was driving in from out of state by himself. Luckily, he was a member of the local volunteer fire department for where he lives with the kids. So, there were people there to be with her step-mother and brothers until I could get there.

I walked into the ER waiting room and was told to sit down. “We tried everything we could.” I don’t remember much past that. There was crying and primal screaming. I terrified my son. He ran out of the room. I thought that someone had taken them out. But, he told me later that her left on his own. We had scared him.

They had to wait until I got there to actually say she was dead. 

They were as tactful and kind as they could be. Since she was a child, the Justice of the Peace had to talk to me and explain that they had to do an autopsy. I was calm for a good bit of the day. But, the rest of the time I was writhing in the floor crying.

That was two years ago. I still live with diabetes to this day. It took my child. If you think that your child might possibly have the most remote chance that your child, or if you are showing any signs that something is wrong. GET TO THE DOCTOR. Or, even go to the store to the glucometer and some strips. Checking a person’s sugar is simple. And, it barely hurts. There are small children that check their own every day. So, suck it up and do it.

If you have a child in your family that you think the parents are exaggerating and that it’s not a big deal to let
them have candy, STOP IT. There is not a parent on the planet that withholds sugar to be mean. They do it for their child’s health. Ask questions. As a diabetic parent, it’s the people that do not ask questions when they are going to keep our children that make us nervous.

This is serious business. A person’s life can be at stake. Don’t let the last picture of your child be one of their coffin.


~~~~~~~~~~~~~~~~~~

I came to know Marlo through a mutual friend a few months back when I was struggling with my youngest child's possible diagnosis of Type 1 Diabetes. 

She is a talented writer as you can already tell, and you can find her on her blog, Nightdreams and Daymares here and on her Facebook page here

I've come to know many people who deal with this condition daily, many of them the mothers of children living with it. Most of them tell me to be strong and be brave and that everything will be okay. 

She never did. 

She told me that this disease was something to be afraid of. That it is a big deal. That it will certainly change our lives, that it could end his. She told me to be strong and brave, yes...but she knows better than anyone that things may not always be okay.

I have had to deal with a great many people in the past year who don't understand T1. Who can't figure out why I carry a glucometer around, why I have Smarties in my purse and water in my car all the time. Who wonder why I take my son aside quietly at school and poke him with a needle before he can have a snack in a class party. Who can't understand why he isn't allowed just one piece of candy right now. Who tell me to just calm down and stay positive. Who act like this isn't a big deal.

It's a big deal. It's a very big deal. T1 is life changing. It can be life ending. 

It is what makes us poke our kids while they sleep at night, what makes us watch them breathe, what puts us on edge when someone seems a little more thirsty than usual. These kids don't just get colds, because any weakness in their immune system sets their blood sugars soaring and dropping. 

Marlo is one of the strongest, bravest women I know. She tells her stories, she shares her experiences, she opens up her life, she shows us the scary, ugly, real side of this disease.

She does it for Sarah and for all the other kids out there, for their families and friends. 

Thank you, Marlo, from the bottom of my heart. 

Your girl would be so proud of you for sharing her story. xoxo

4 comments:

  1. wow. just wow. Marlo~ I am so very sorry to read of the death of Sarah. Thank you for sharing her story and for sharing KNOWLEDGE of this terribly misunderstood disease.
    Kelly~ I love you girl. I promise with my whole mommy heart that I will NEVER ignore symptoms, I WILL share knowledge and understanding. xoxo

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    Replies
    1. Thank you. It's not a story that should stay quiet. It wasn't Sarah's style.

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  2. To most people, it looks that it is just a poke, a number, then a shot. Easy peasy.

    It is so much more. it's fear, anxiety, and straight up panic. All kept internal because showing all of that could adversely effect blood sugars. Not your own, but your child's. The brain uses glucose to work. Blood sugars can drop with emotions, and intense use of the brain. Standardized state tests that take hours? Can bottom out a teenager in no time. And hormones in teenagers? A big old roller coaster. And then winter? with the flu going around? Blood sugars, and ketones are checked constantly.

    Marlo, I thank you for speaking up and telling Sarah's story.

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  3. I'm so sorry to read your story. Heartbreaking. My daughter n her two children have diabeties. My worst fear. Hate this illness.
    Wish you well for the future xxx

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