I'd choose to live

Blaine is our resident history buff.  He has loved learning about historical facts for as long as I can remember. A lot of history can be fairly violent in my opinion, however, it is not unusual for Blaine to read a book on Viking torture devices before going to bed. He is now reading the Hunger Game series for the third time (I read them first before I agreed to let him read them). Yes, they are violent, but they have opened the way for discussions of what living in a totalitarian government system would be like, leading us to conversations of what life may be like in places like North Korea. Later I’m sure it will lead to conversations about human rights.

When Blaine was four years old, my aunt gave him a dream catcher to hang in his room. It’s been hanging on his mirror for six years now. Coincidence or not, he hasn’t had a nightmare that he can remember since.  Maybe that’s why he can read such disturbing books before bed. On the other hand, Aislin would be traumatized by reading about a dog being temporarily separated from its family and would insist on sleeping in my bed all night. She will have to be 18 before she can read the Hunger Games, if ever!

The other day, out of the blue, Blaine asked an interesting question.

 

Blaine: “Mom, if you knew, before birth that you would die a horrible death, would you still choose to be born?”

Me: “Wow, I have no idea. What would you choose?”

Blaine: “I’d choose to be born anyway, even if I died a horrendous death.”

Me: “Well, that’s a pretty optimistic view point from a pessimist!”

Blaine: “Yeah, I know.”

I don’t know why he thought of that question, but I thought his answer was interesting. He’d choose to live anyway. 

Sometimes I think about friends and people that have been in my life that died before their time. For one year I worked and a speech and language pathologist on a preschool assessment team. For one year we had lunch together nearly every day. We talked about our families; we laughed together and shared the stress of being a working mother with children and a life outside of work. At the end of that school year she was in a fatal car wreck. She and her youngest son died in that wreck, while her husband and oldest son lived. There is not a day that I don’t think of her. If I’d known I’d only have one year to get to know her and enjoy her presence, I’d choose to spend that time with her, all over again. None of us know how long we have, but we can chose how we focus our energy on the time that we do have.

Hearing Blaine say he’d chose to live anyway makes me so proud. It comforts me on the days that I still want to scream, shout or sit down and cry. It wills me to keep going. I pray he will keep this veiwpoint in the years ahead. It scares me when I hear other parents talk about diabetes-burnout, but for now, all we can do is choose to climb the mountain and live each day.

Climbing the Mountain, Each Day

What is it like to live with diabetes? When we were first told that Blaine had diabetes I thought foremost that I was glad it wasn’t cancer.  Secondly, I thought that I would need to get over my needle phobia quickly. Then lastly, I thought that it would be as simple as doing a few shots a day.

While diabetes can be managed by insulin, and while my son will stay alive with this medical intervention, it is a far cry from being simple.

Living with diabetes, is dealing with diabetes. It is making the choice that each day you will be present and take part in the active management of diabetes. It is anything but simple. There are no days off with diabetes. It is an ever present disease that demands to be managed, some days it seems hour by hour. It is a chronic illness.

Recently there were a few days that Blaine remained in the 200s, no matter what we did. During this time as I was trying to determine what I must be doing wrong, I had this vision of us climbing a mountain.

I could see us climbing this mountain at all times of the day. We were climbing as the air was crisp and chilly, while the sun was rising. I could feel us climbing in the middle of the day as the sun bore down on us and we were tired, thirsty and out of breath. Then I could see us climbing still as the sun was setting and we were hungry and shaky. I could feel us climbing and willing ourselves to keep moving throughout the uncertainty of dark nights on this strange mountain. We were climbing this mountain that I never could get a good glimpse of the top. All of my energy was focused on climbing upward and encouraging Blaine to keep climbing with me.  While we climbed I’d see other kids Blaine’s age skip, jog or run past us.  They laughed and ran upwards without looking back while Blaine and I grabbed onto boulders to pull ourselves upwards with bloody fingers and distant looks in our eyes.

But I knew what would be on the other side.

I knew that if we could just get to the other side, Blaine would have all the things that his peers would have on the other side. The things that they would have without the battle of the climb: their eyesight, their kidneys functioning properly, their heart functioning and no nerve damage. These were the things Blaine could have too, if only we decide to climb the mountain every day.

While many days the mountain is every present and every inch of the climb can be felt, there are some days where rest can be found. Those precious days when his blood sugars stay in range. These are the days that he feels great. He is a funny child with a quick mind and great sense of humor. He is articulate and determined. Whether he is determined to lobby for a pet pig (which has been going on for nearly a year, although he has dropped his ban on eating pork products) or to work out to doing 150 pushups and sit-ups each day. These are the days when I don’t feel the climb.

I can sit back and rest for a minute and enjoy the view. I don’t worry about his fingers becoming raw from the constant pricks. I don’t worry about his extremities becoming numb or him losing his eyesight. I feel like we can sit back and breathe in the mountain air and reflect on how far up the mountain we have climbed in these last 5 months.

These are the days when I can be thankful. I can be thankful that I still have my son. A century ago he would have been given 6-12 months to live. I would have had to watch him wither away as he lost his eye sight and kidney functions. I would have had to watch his body turn on himself and then watched him die as I stood by helpless.

To an extent I am still helpless. We are fully dependent on the insulin he receives via mail delivery to keep him alive. It is a conscious choice that must be made each day. But we have the tools to keep him alive, and if we chose to engage in the climb each day we can keep him healthy too. His risk of complications will always be there, but hopefully we can manage them by actively choosing to climb each day. No one knows how many days any of us have left. Worrying too far into the future is futile, but making active choices to prepare now for the future is key. Enjoying each moment and choosing to live each day is what is most important, we cannot let tomorrow rob us of today as long as we are doing our best each day.

Six Degrees

Prior to Blaine’s diagnosis I didn’t think I knew anyone with Type 1 diabetes. Since his diagnosis the following series of events happened:

· We learned that there were 3 other children at his school with T1. Two are his same age. One is younger, just finishing 1^stgrade. The younger one rides Blaine’s bus. All three of these children live in our neighborhood.

· Blaine’s pediatrician has T1. I thought he wore a beeper. Turns out he wears a pump. He called to check in on Blaine at the hospital, offer his support and let us know he’s on the board of Camp Kudzu, and to also let us know he is T1.

· Blaine’s good friend’s mother is T1. Again, I thought she wore a beeper. She too wears a pump.

· When I took Blaine to have a retina scan (since blindness is now a risk factor) our eye doctor let us know his son who is in college is T1. He spent extra time looking over Blaine’s scans and talking with us.

When I think about these things I know we’ve been relatively lucky. Blaine’s school nurse was very experienced with T1 management. Blaine, when diagnosed, already knew two other kids his age with T1. He has a friend whose mother immediately reached out to us. His pediatrician is T1 and reached out to us. His eye doctor understood why I made an appointment for my 10 year old to have a baseline retina scan. We’ve gotten more support than most I would imagine.

But, still.

"Everyone had their thing"

During spring break Blaine, Aislin and I met up with one of Blaine’s friends, PJ, and his mom. Shortly after Blaine was discharged from the hospital and back at school PJ’s mom reached out to me. I didn’t, and still to a degree, have the energy to tell everyone I know about how diabetes is now part of our life. I haven’t made a Facebook announcement, I’m not on twitter or instagram, and I usually only like to talk about positive things with others. My journaling and hit or miss blogging is where I get my negativity out. I don’t feel that I’m completely in a good place to be positive about diabetes yet, so I’d prefer not to talk about it. With my closest friends, I will tell them exactly how I feel, but with most people I just prefer to steer the conversation elsewhere.

What I didn’t expect when PJ’s mom, Maria, left me a voicemail, was her telling me that she also has Type 1 diabetes. Whoa. I realized once she left the message that all those times she leaned over to check what I thought was her beeper, she was checking her pump. Maria is a school counselor at a high school in our county. I assumed that for whatever reason, she wore a beeper for emergencies, although I knew she had a cell phone. I just thought with county budgeting, maybe they still used beepers. In her message she told me that she knew that I’d be busy, but to call her back at my convenience. I knew it would be a while before I was ready to talk so I sent her a text and thanked her for calling and told her I’d get in touch soon.

A month later, I felt like I could talk. I knew I’d have a ton of questions, but at the same time I really didn’t want to be forward or nosey, but I knew if anyone would understand and have answers to some of my questions, it would be her. I asked if they wanted to meet at a local pizza place for lunch during spring break, being that we both had the luxury of a week off. That lunch was probably one of the most important lunches I’ve ever had. During our two hour lunch Maria normalized the process for me. She told me “everyone has their thing”. For her son, it was learning to cope with ADHD. For her it is coping with her diabetes. She stays incredibly fit, she eats healthy, she listens to her body and takes care of herself. She manages a career and takes care of her son, who stays busy with travel ball and other commitments.

She told me when PJ found out that Blaine had diabetes, he became very sad for him. Because he knew what it meant. He has spent his whole life watching his mother check her blood, manage her pump and take care of herself. He was so sad that one of his friends now had to do the same.

I can’t remember everything we discussed. I know we talked about numbers, and pumps. We talked about exercise and diet, I told her that we had our first eye doctor appointment for a retina scan, since blindness is now another risk factor.

I just remember that being with her was such a comfort for me. She was entering her freshman year of college when she was diagnosed. She still finished college, and graduate school and had a child. Yes, diabetes sucks. It is an inconvenience, but it is something that can be managed.

Everyone has their thing. Each time I see Blaine touching his finger tips to find the best spot to prick, or patting at his arms, legs or stomach to find the least sore spot for his next injection, I honestly want to sit down and cry. Or go into a rage and destroy everything around me. Or scream and beg a surgeon to remove my pancreas and give it to him. Just give me his pancreas. Let it be me! Let me do the shots and finger pricks! He is just a child. A sweet little boy that never deserved any of this. But, then I hear Maria’s voice, telling me “everyone has their thing.” And I know that it is true. He will be fine. He will cope with this, and so will I. After all, it’s our only option. Seeing her and knowing that she copes every day gives me hope.

Two weeks

Two weeks. Two weeks have passed since our new lives have begun. Yesterday was Blaine’s 10^th  birthday. I’m thankful he had 10 years free from constant monitoring and insulin calculations and corrections. I still have moments where it hits me. My son has diabetes. He will deal with this the rest of his life. We were admitted into the hospital two weeks to the day, probably on the hour of his birth and received the Type 1 diagnosis. We stayed for three days before being sent home with a 100 page manual of important information to help us cope and care for him, and about 700$ worth of medications to last us through the first month.  Since the day of discharge, and leading up to his 10^th birthday, he has had no less than 88 finger pricks for blood glucose monitoring and 60 insulin shots.

He is still handling it amazingly. I’m doing better. I find it is crucial to only stay in the current moment and current day. I cannot think too far ahead.  When I see that he is happy, I feel happy. Maybe that’s the best I should hope for, for now. I

 have ventured out to the web to look up a few blogs, either written by adults with Type 1 or by mothers of Type 1. It is overwhelming. Posts on diabetes and illness, pumps versus insulin shots, diabetes and depression, treatment of highs and lows, DKA, additional complications from having diabetes.

I force myself to stay in the current moment, that’s the best we can do.

5 days since diagnosis

It’s been five days since our diagnosis, and I still can’t wrap my head around it. I can’t sleep. When I do sleep it’s not restful. And it’s not because I’m doing the 2 am BG checks, Brent is. I close my eyes and can’t go to sleep. The second I drift off I immediately begin dreaming of different numbers. Is he too high or too low? How do I treat it? I don’t have enough experience to draw on to make judgment calls. My short term memory is gone. I can’t make simple decisions like what to eat or wear, let alone decisions about how many units of insulin to give.

I’m irritable; I find I have little tolerance for anyone around me. I cry easily.  I have this overwhelming urge to sleep and then wake up and this all be just a bad dream.  Reality hits me at odd times. I was in a meeting with a family who had received a diagnosis of Autism for their adopted son nearly a year ago. We sat and talked about various strategies and how going through different stages with their son on the spectrum would be different than their experiences with the neurotypical child.  I was able to lose myself in talking about their child for about 10 minutes. Then, it hit me full force, like someone knocked the breath out of me by punching me in the stomach. “My son has diabetes. There is no cure. He will be dependent on insulin for the rest of his life, because his body will never produce insulin on its own.”

And that’s how it goes. He has a good BG level, I’m happy and feeling like I can handle things, he goes low, I panic. He goes high, I’m not sure what it means and doubt my decisions. I’m double checking my math, and then triple checking by having Brent check it for me.  I don’t want this new normal. I want my old life back.

I’m not responding to emails. I don’t want to schedule a girl’s night out with my closest friends, even though they check in on Blaine and ask if I want to get out. I don’t want to be away from him. I’m at basketball practice now with Aislin. Blaine had his first track practice this morning. He looked so precious. He wore a new lime green Puma shirt I had bought him a few weeks ago, one that I noticed looked bigger than it should have when he tried it on. This morning we measured his breakfast, counted carbs, packed a water bottle and bag of snacks, along with the now-standard bag of BG monitoring supplies.  He was ready to get to practice and looking forward to it. I was nervous. They told us before leaving the hospital that it would be like bringing home a newborn. At first we wouldn’t know what to do and we would doubt ourselves, but that it would get easier.

In my opinion, it’s more like bringing home a fragile newborn. One that was in the NICU and was only released after swallowing on its own and gaining enough weight. We are given knowledge and insulin, but not experience. That we will only get through time, trial and error, and living every day. Every parent is given the job of keeping their child alive and healthy. Now we are told we have a child with an autoimmune condition. A condition in which his body began attacking itself, and we are taxed with keeping him alive.

Its indescribable how that feels, the weight of it is crushing.