I look back on that sweet time of Jaxson's beginning years often. It was intense, but passed too quickly. I started motherhood having absolutely no idea of how to take care of a baby. But I quickly settled into this new-found love with the realization of knowing this is something I was born to do. Raising Jaxson was, is, and will always be, the most important thing I will ever do in my life.
There are so many fond memories of looking down at his precious face as I nursed him. I remember singing to him and caressing the side of his face as he drifted off to sleep. Like mothers have done through the ages, I would catch myself watching him sleep--looking for that gentle rise and fall of his chest. Even going up a size in diapers, especially when he was out of swaddlers, was a bittersweet milestone. So many times, the passage, "we may never pass this way again", would ring in my head. I wanted time to stand still, but it seemed to grow in momentum with each passing moment.
He rapidly achieved all the anticipated milestones; walking, talking, weaning, potty training, counting, saying his ABC's, and becoming more independent with each step. He's always been ahead of schedule. His height and weight were off the charts every time we saw the pediatrician. He began talking before he turned 1 and could easily converse at the age of 18 months. I'll never forget little Jaxson being upset because none of his friends would talk back to him. Yes, I'm his mother and more than a bit biased. But he truly is a special child and he has given us many reasons to brag.
The good memories are peppered with the kinds of things you would prefer to forget. He had to have 8 caps and crowns on his teeth at the age of 23 months. He broke his left arm when he was 2. It never failed--we had to hold him down for every injection, immunization, and throat swab at the doctor's office. It took more than one person to restrain this young, yet mighty, child. James would hold his shoulders and I held his wriggling hands as the nurse would brace his legs between her thighs. Yes, he was THAT child. The one you heard screaming at the top of his lungs in fear and defiance.
One particular bad memory stands out. We were in Santa Fe at the Children's Museum when he was 5. As he was finger painting, he turned to look at me and said, "Mom, I can't feel my legs. I think I'm about to pass out."
He was pale and in a cold sweat. We rushed him to the bathroom because he felt nauseated. He struggled with dry heaves and continued to complain of not being able to feel his legs. My husband scooped him up and we quickly got into the car with my husband holding him as I frantically tried to remember where the hospital was.
On the way to the hospital, he begged to have something to eat. He insisted that he was starving. I did realize that he had not eaten well that day. He had been so excited about all our vacation activities, we couldn't get him to finish any of his meals. In spite of my nursing background, some kind of instinct kicked in. My husband agreed that he needed something to eat...NOW.
I spotted a McDonalds and quickly whipped into the vacant drive-thru line, hurriedly placing an order and almost throwing the food into the back seat. Jaxson ravenously inhaled the food. The color began to return to this cheeks. The nausea went away. He said his arms and legs felt okay. He returned to his usual self rapidly and was asking to go back to the Children's Museum.
It seems crazy now, but my husband and I decided not to take him to the hospital. He seemed perfectly fine. And he was--for the time being. We didn't know this would be a foreshadowing of things to come for him.
Because of my family's history, I have always suspected--almost known--that Jaxson would become diabetic someday. When we returned from our Santa Fe vacation, I took him to see his pediatrician. In spite of James's reassurance, the experience had unsettled me. I asked his doctor if we should test him or if I needed to regularly check his urine or get a glucometer. She casually passed it off and somehow made me feel as if I was just being overly paranoid. She was certain he had just experienced a mild hypoglycemic attack from not eating well. After all, he had fully recovered from a miraculous 6 piece chicken nugget happy meal.
After his 5th year, I breathed a small sigh of relief in knowing I had done what I was supposed to do. At the very least, I had kept him alive. I had helped him navigate infancy, toddlerhood, and guided him into thriving well in his childhood years. Surely, the most physically intense part of raising him had passed. After all, he was learning to do more and more on his own. He needed me less than before, which filled me with pride and broke my heart all at the same time.
Fast forward to January 6th of his 7th year; the day of his diagnosis. You know the rest of the story. In retrospect, I would love to go back to that place in time just after Santa Fe and ignore the doctor's lack of caution. But, we can't go back--can we? It is one of my biggest regrets--that I didn't listen to that little voice inside of me, telling me something was wrong with my child. Maybe we could have caught it earlier. Would it have made a difference for him? It is something we will never know.
I'm thankful for my instinct and that we didn't wait too late. I read stories of children who don't get diagnosed until after they have seized or slipped into a coma. Thank God I knew what to look for and knew to take him in and insist for him to be tested.
I still had the crazy urge to push away the overwhelming fears in my mind, telling myself I was imagining things or even, Heaven forbid, willing things to happen by these nagging thoughts that would not go away. Why was he so thirsty? Why wouldn't he eat? Why was he going to the bathroom every few minutes? Why did he look so pale at sometimes, then flushed at other times? How had he lost so much weight in just a week's time? Was I watching my child die? It terrified me. But I knew what his symptoms indicated. And I finally gave in to what I KNEW was going to change the rest of our lives--his life, most of all. And his new pediatrician confirmed our new reality.
Jaxson did have type 1 diabetes. My son--my baby--had a life-long autoimmune endocrine disease. There was no cure. This was "the bad kind" of diabetes. It can't be controlled with diet or lifestyle. He would have to check his blood sugar and inject insulin several times a day, every day, for the rest of his life--to stay alive. I knew this disease all too well. I had seen its ugliest side. It killed my sister in 1987 at the age of 30.
I tell myself every day that Jaxson's journey will not be the same as my sister's. It is a new age. Treatment and technological advances have changed the game. I'm so grateful for the medicines and gadgets that make managing this disease so much more efficient.
Did you notice how I used the word 'efficient' and not 'easy'? That's because this disease is NEVER easy. Just when you feel half-way confident and think you have things under control, diabetes will throw you a curve-ball. It is unpredictable, at best.
There is another saying, "type 1 diabetes parents never sleep". It's true. In case you don't know why, this is the reason: children with T1D have a tendency to go low in the night. Moderate lows are treated with food to build the sugar levels back up in their bloodstream. Critical lows are treated with emergency glucagon injections. If they go too low, they could easily go into a coma--or worse--they never wake up.
It is scary, to say the very least. I set my alarm, depending on how he is doing, to wake up for checks every 1 or 2 hours. Once again, I silently watch my child as he sleeps. I've returned to the days of vigilantly watching for the telltale rise and fall of his breathing. And there's more. I lay a hand on him as my mind repeats the addage, "Warm and dry, sugar high. Cold and clammy, get some candy".
More times than not, I seek reassurance via the glucometer. I hate everything about this disease. But most of all, I hate having to puncture my child with needles. So many needles. Every day. All through the night. Finger sticks. Injections. I HATE IT! I hate it so very much--for him.
He has become my hero. The boy who used to kick, and scream, and fight has changed into a determined, compassionate young man. Even though he can do his own checks and shots, I try to take as much of the burden away from him as I can. After all, he's still just a kid--and no child should have to endure what T1D kids go through. Every time I stick his finger or give an injection, I say, "I'm so sorry, Boo." (that's my term of endearment for him). He always replies, "It's okay, Mom, I can handle it." He reassures me each time that I'm not hurting him. He hasn't resisted or complained since the day after his diagnosis.
In the midst of our challenges, I am constantly reminded to be thankful. As I write this, we are awaiting something very special. A device is on its way to Jaxson. It is something that will make this disease more managable. It will make his life easier.
We found out this week that our insurance will cover a CGM--that's a continuous glucose monitor. He will wear a sensor and transmitter on the the upper back of his arm that will check his blood glucose level every 5 minutes. A receiver will display his results and show us his level and indicate if his blood sugar is trending up or down. It will alarm us when his level rises or falls outside of his parameters, either going above 200 or below 100.
We will even be rigging up a system to upload the data so it is remotely accessible to me and my husband. If you see me sporting a cool Pebble watch, you won't see me checking the time or cruising the internet. Look closely and hopefully, you will see a number somewhere between 80 and 120 with an arrow pointing to the right.
All of us who live in the T1D world constantly hang on the promises of a "bionic pancreas" and better still, a beta cell transplant. But in the meantime, there has been a passionately dedicated team of T1D rock stars who have vowed, "We Will Not Wait", who have created a system that gives our children control, peace of mind, and better health--and helps their parents sleep a little better at night. It is the Nightscout team who have fostered the CGM in the Cloud movement. A mother's heart overflows with gratitude because of these determined people who have not let government, big pharmacy, corporations, or any obstacle for that matter, stand in their way.
When my sister was diagnosed in 1967, my parents were constantly told that a cure was only 5 years away. It turned out to be a time warp and an empty promise. Every passing year, the cure was only 5 years away. Each year passed, along with the hope of a cure, as they watched her body ravaged to death by this disease.
The cure is visible now. It is within reach. We have the technology. We have the science. We have the knowledge. It WILL happen. Jaxson will never lose hope. Hope is his favorite word.
We need everyone's help. If you ever need a good cause to back, please consider funding research through JDRF. And if you already have a charity of choice or no extra funds to donate, then we ask for your prayers. Get down, look up, and send some knee-mail to the Big Guy.
And if you happen to spot Jaxson wearing his sensor or with his "rig", please feel free to ask him about it. He loves to educate people about this part of his life. Someday, I hope and pray not too far away, maybe this will all just be a bad memory for him. It is time for a cure.
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