That date will forever be remembered in our little family. My husband and I will never forget the helplessness and fear of seeing our beloved child at the brink of death. He had lost 12 pounds in the span of only a week. Initially, it was thought he was suffering from strep and scarlet fever. But he didn't improve on antibiotic therapy. He got worse. He had no appetite. He only wanted to drink. His thirst became voracious. He was urinating every few minutes. He looked frail and gaunt. His breathing was shallow.
I knew. I knew what I didn't want to acknowledge. My child...my only child...had the same disease that had stolen my sister's life 27 years before. Instinct rushed through us as we realized...we had to get help for him...quickly!
I can still envision the concerned look on his pediatrician's face as my husband carried the huddle of our son into the exam room. My listless boy winced with a weak cry as they pricked his finger to check his blood sugar...for the very first time. Everything seemed to be moving in slow motion as the doctor turned to me and confirmed my suspicions. The word sounded like a thud. Diabetes.
The next couple of days were a whirlwind. We rushed our son to University Medical Center as a direct admit. Nurses, the pediatrician, the endocrinologist, dieticians, counselors, admission clerks...it was a constant barrage. Each one added another layer of information for us to absorb and assimilate...as quickly as we could. Our son's survival depended on it.
In just one day, we learned about counting carbs, insulin ratios, how to use an insulin pen, the importance of ALWAYS having his emergency Glucagon kit with us. We were given a complimentary back pack, books and pamphlets, DVDs, a glucometer, syringes, and a Rufus bear for Jaxson to practice giving his own injections.
At the end of a very long day, my husband had to go home to get a change of clothes for us, my medications, and take care of our little dog, Ginger. I crawled into the hospital bed with Jaxson. He was finally sleeping. I cradled him in my arms. And I sobbed until my tears ran dry. I knew what this meant for him. I had to find a way to push through the shock of this situation and dig deep. I was aware of the strength with which I was going to have to gird myself...a strength that was going to be crucial. The way I responded and handled this would determine Jaxson's own strength and ability to face the onslaught of a life-long battle.
It has been a year full of challenges. I can't begin to list all the things we have learned. We have read. We have researched. We have kept many appointments. We have made a lot of phone calls. We have been in contact with several other families who are rowing in the same boat. We have attended events.
It all boils down to this: Type 1 Diabetes is an individual disease. There are similarities, but each person's experience is different.
In Jaxson's particular case, this is what we know...so far ~
He has to take insulin shots to cover elevated blood sugar levels and when he eats carbohydrates.
He has 2 different kinds of insulin...one he takes as a bolus for his blood sugar and carbs (Humalog) and a basal long-acting insulin at bedtime (Lantus), His insulin ratios and basal rate is determined by his blood sugar and A1C number (which is checked every 3 months).
When his blood sugar drops, he has to eat something carby to level him out.
Things that effect his blood sugar include...food, drinks, activity, weather, temperature, emotions, hormones, altitude, allergies, travel, and common illnesses like colds. Having the flu or a tummy bug can throw him into diabetic ketoacidosis (DKA) in a flash. That is life-threatening.
We, as a general rule, follow a low-carb lifestyle.
He eats constantly. My day is full of preparing low-carb fillers to tide him over between the essential carbs he eats at mealtime. I've mastered several different ways of preparing eggs. I make snack plates full of olives, pickles, ham, turkey, chicken, cheese sticks, cucumbers, tomatoes, carrots, celery, cream cheese fat bombs, slices of different deli cheeses, blueberries, strawberries, salami, pepperoni, sausages, little smokies, peanut butter, pimiento cheese, chicken salad, tuna salad, almonds...it's endless. Diabetes is always hungry.
We read labels on everything.
Grocery shopping takes longer.
We've learned to account for the glycemic index of foods. For example, pizza and cereal have delayed spikes.
We avoid anything that contains sugar alcohols...which are in a lot of sugar-free foods. Sugar alcohols make him very sick.
He can essentially eat anything...as long as we cover it with the proper amount of insulin. He does enjoy cake and cupcakes at parties. He eats pie and ice cream. He still eats burgers and fries.
Every insulin correction is basically a guessing game. Even if you go by the numbers, his blood sugar will still be a roller-coaster. Sometimes we follow-up with chaser boluses if I don't get it right. He ingests glucose drinks, tablets, or an applesauce Gogo if I overshoot.
Jaxson wears a continuous glucose monitor (CGM) that checks his blood sugar every 5 minutes. The sensor, which is inserted under his skin, is changed every 1-3 weeks, depending on how active he is. I wear the receiver. The parameters for his blood sugar are set at 90 and 200. If he goes high or low, it alarms me and I correct him accordingly...either with insulin or food. I hold the receiver during my sleep.
Speaking of which...diabetes NEVER sleeps. It is 24/7/365/Forever. Most parents of Type 1 children will tell you they rarely sleep either...at least not soundly.
We calibrate his CGM at least twice a day with regular glucometer blood checks.
We check his urine for ketones on a regular basis...just to make sure he isn't spilling any ketones.
We carry his supplies, monitor, gear, and plenty of snacks and drinks everywhere we go...everywhere!
This is Jaxson's disease. However, we can't lose sight of the fact that he is an 8 year old boy. I do my best to lighten his load and take as much of the burden away from him as possible. That is also a balancing act. Even with as much as I do for him, it is imperative that he assume responsibility for his own care. We encourage him to make good decisions with food. I involve him in making the decision of when and how much to dose with his insulin. He gives his own shots about half of the time.
The only way I can describe how a Type 1 parent feels is to compare it to a terminal heartbreak. It's the same sense of sadness and loss that leaves you with that ache in the pit of your gut. You want so desperately to take this away from your child...but you can't. I stay as positive and proactive as I can for Jaxson's sake. As I mentioned earlier, I know he feeds off my attitude. But, I'm human and I have chinks in my armour. I do take prescription medication to help manage the stress and anxiety. I have a lot of sadness and can't allow myself to think in terms of what our life was like before and after diabetes. Seeing pictures of Jaxson when he was sick break my heart all over again. My doctor says it is similar to post-traumatic stress disorder. I'm not ashamed of it. Whether it is situational or chemical, the medication helps me help my child.
Our lifestyle as a family has drastically changed. James works a lot of hours and is gone from home for long stretches so we can have good insurance coverage and be able to pay what insurance doesn't cover. Even with having good insurance, it has been expensive. And it will continue to be so. I rarely get any personal time and James & I find that couple time is rare for us. It's hard to find qualified babysitters and not sure we could trust anyone enough to be able to enjoy ourselves away from him. But we will roll with it and keep moving forward. We have no other choice.
Just last night, we were watching a commercial for St. Jude's Children's Hospital. Jaxson made the comment, "At least I don't have cancer." But then, he thought about it some more and changed his mind, "You know what? I think I would rather have cancer than diabetes. At least with cancer, I would only have to take shots temporarily and there would be a chance for a cure. And I could eat anything I wanted. There's no cure for diabetes."
And again, I felt my heart break for him. He's not alone. There are millions of children all over the world fighting the same monster. There are millions of parents fighting along their side. We worry about their numbers, what they are eating, if they are high or low, if they are getting sick, how to manage when we aren't with them, and how we will ever let them go to be on their own when they grow up and go out into the world. Will we be able to give them the tools they need to be successful and stay healthy...and safe? Will they come across people in their life that actually care even a fraction as much as we do?
Yes, this all sounds rather grim and depressing. I'm not expressing my feelings or putting all of this out there for sympathy. We need more awareness. More education. More understanding. More funding. More research. We need a cure!
We have faith. We know that God did not give Jaxson diabetes...but he made us strong enough to handle this life. We have hope. We constantly pray for those who are taking chances and have their nose to the grindstone for a cure. It can happen. We are ever so close to the elusive cure! So we ask that you give if you can. If you have money to donate, please consider funding JDRF or the individual doctors who are pursuing the cure. If you have no extra money, we ask that you pray. Not just for Jaxson...but for all of the people who live with diabetes day in and day out.
You will usually see a smile on our faces. Even if you tell us, "Oh, my aunt had Type 2 and it was cured." or "We had to give my diabetic cat shots for diabetes." or "He will get used to it." or "Maybe if he eats right and exercises, it will go away." or "Should he be eating that?"...we will still smile. We know everyone has good intentions. But be prepared...Jaxson may take it as an opportunity to educate you. He has matured and learned a lot in the past year.
So this is our life...until there is a cure. We will deal with it with as much courage and tenacity as we can muster. We won't let it beat us. We will attempt to live as normally as possible. I will not allow diabetes to label or identify my son. He is strong. He is smart. He is courageous. He is my hero. He is so much more than diabetes!
In spite of all his challenges, there have been triumphs! Jaxson is thriving. He is an 8 year old, 4'10.5", 90 pound ball of energy, curiosity, and wit! He is intelligent and compassionate. He loves spending time with his friends. He loves playing video games with his Dad. His dog, Ginger, is his constant companion. He is artistic and creative. Oh...and he's handsome! He loves Math and Science and Technology. It wouldn't surprise me one bit if he grows up and turns this negative into a big positive for others.
The day he was diagnosed was the day he was almost taken from us; and it was the worst day of our lives. Our community refers to it as a "diaversary". Some throw celebrations akin to a birthday. Others consider it repulsive to do so. How is one to properly show reverence or even possibly ignore THE day a terminal life-threatening disease is shackled to someone so young?
As for that "diaversary"...it will just be another day. While I would prefer just to forget that day altogether, Jaxson has found it might be a good excuse to ask for a special toy, a really super duper carby dessert, a break from school work, a get-out-of-trouble free card, and permission to say a bad word once. I just may indulge him. It will always be his day. It is his choice. It's the very least of which he has earned.
As always, thank you for caring. Your love, concern, and prayers mean everything to our family!
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