by diabetesfoundation | Aug 29, 2017 | Events, News
My sister was diagnosed with diabetes when I was 4 years old; she was three. From then on, it was always, “Watch out for your sister,” and making sure she wore her necklace purse with the sugar cube in it. (We did not know at that time that sucking on sugar in case of “reaction” would have been too slow to help.)
I learned to be a light sleeper, sharing a bedroom with her, in case she woke up during the night having a reaction. I learned when to give her orange juice, and when to wake up Mom. I learned not to have dessert, since she could not, and to like sugar-free candy and cookies, which she could eat.
We worried about her as a child, learning to give herself her insulin injections. We worried about her as a teenager, rebelling against authority and eating what she should not. We worried about her retina detaching when she was twenty-one and her kidneys failing when she was thirty-six.
We worry a lot less now, as she is 8 years past a kidney transplant, although still struggling with a complicated medical regime and cataracts.
I would not wish diabetes on anyone. Life is complicated enough without it.
Fern Walter Goodhart
The First Day of School
I am a teacher and I watch over the most valuable of all treasures, your child
Your car slowly leaves the school as your son finds his way into his new classroom
(You wonder if I remembered all that you have told me about diabetes)
Your eyes gaze beyond the green light at the corner as the car behind you beeps to remind you to move
(You contemplate whether there is an unexpected birthday party with cupcakes at some random time today)
As you pull into your parking space at work, you close the car door and realize that your keys are locked inside
(You were distracted by the thought of me forgetting to remind your son about his ten and two o’clock snacks)
Lunch at your desk is something you packed at 1:27 this morning after you awoke to check your child’s glucose level
(You question if I have told the lunch aides to make sure your son eats his carefully calculated meal)
A co-worker notices you yawn in the afternoon, and she realizes that you never sleep more than four consecutive hours at night
(You pray that I will recognize the signs of extreme highs or lows in your son)
In traffic on the way home from work, you patiently wait for the line of cars to move
(You hope that I understand when your son becomes preoccupied in class worrying about his blood sugar level)
You are a parent and you grant me one of the most valuable of all gifts, your trust
When our daughter Lauren was diagnosed with juvenile diabetes two years ago, we thought that giving her shots was the worst thing in the world. We now think it is easy compared to regulating her blood sugar levels and dealing with her behavior when she has a high blood sugar level. We rarely feel confident about our decision on how much insulin to give her.
We remember a time when we had taken her to an amusement park, where she ate mostly chicken nuggets and a few french fries. We thought that chicken nuggets did not have any carbohydrates. As a result, we did not give her any short-term insulin. What a mistake that was! On the ride home, Lauren became so cranky she started screaming and punching the windows. I knew her blood sugar was high, and it was — almost 500! We had to stop the car to give her a shot of insulin.
Then there were times that she went low in the middle of the night. Once when she was sick and went to bed without eating a bedtime snack, we remember testing her at 2:00 AM and finding her with a blood sugar of 61. That night we had to juice her up and get up every hour and a half to do it again. We can’t wait for a cure for diabetes so that Lauren can live like any normal kid and we can sleep peacefully.
Nancy and David Rosenfield
How would it feel?
The question occurred
As I moved through my busy day undisturbed,
To be challenged by illness,
And ever reminded
That our lives are short
And often we’re blinded
To the value of love and friendship and joy
Or the plight of a neighbor
Who cannot enjoy
These gifts that daily
We take so for granted.
How would it feel?
I thought as I spent
The fruits of my labor
On baubles and rent
How would it feel?
If life weren’t so sure
And instead of these trifles
I dreamt of a cure.
My Sister, My Hero
Diabetes complicates our life. We cannot go on vacation or even a short trip to the mall, without taking appropriate precautions. We have to be prepared for any emergency! Having a sister with diabetes has made me a more cautious and more nervous person.
Diabetes complicates our life. During the summer months, Robyn and I go to a camp in Pennsylvania. Because our parents are not there, I have always felt responsible for her. There are people at camp who make sure that she is healthy, but I am her older sister, I must protect her. Diabetes has made me a more responsible person. It has made me more conscientious.
Diabetes complicates our life. After many years of living in a familly with a diabetic child, I know that I am blessed for I am healthy. Diabetes turns everything upside down. Shots, checking blood sugars, eating the right food balanced with the right exercise, make daily life a struggle.
Diabetes complicates our life. Life is hard enough when you are a teenager. Diabetes makes it harder. My sister has diabetes. Her life is more difficult than most. Yet, she handles it with grace and never complains. This makes her a brave person. My sister is my hero.
Diabetes complicates our life, but at least we are alive.
Samantha Hendel, age 15; Robyn Hendel, age 12; Melanie Hendel, age 3
Diabetes is a Force
Diabetes forced my cousin into the hospital.
Diabetes forced my family into the passenger seat as it took them for a ride.
Diabetes forced my aunt to be pro-active and retake the wheel.
Diabetes forced my young cousin to be brave, to be bold, to be stronger than the disease that unexpectedly knocked on her door.
Diabetes forced out of my aunt, a desire to fight this disease until the end and an ability to write which she probably didn’t know she had.
Diabetes forces you to be strong.
Diabetes forces families to come together.
Diabetes forces children to become adults, to be aware, to be conscious of their foe.
Diabetes is the steepest hill I know.
Diabetes forces families to climb, no matter how high they must go.
Diabetes forces eyes to tear and hearts to ache for those taken captive.
Diabetes forces courage and strength out of the soul. Why me, why her, why you?
Diabetes forces questions of resentment and anger out of all of us.
Diabetes forces doctors to strive for a cure, victims and families to fundraise, aunts to write, cousins to fight.
Diabetes forces my cousin, her sisters, my aunt and uncle to climb higher every day.
Diabetes is a hill.
Diabetes forces them not to look back, not to slip, not to fall.
Diabetes forces the weak to stand strong, the short to stand tall.
My cousin is an amazing person.
Diabetes forces her and her family to climb higher.
Diabetes is a hill. They will reach the top.
Eric Kaplan (Cousin of Robyn Hendel)
When I was a young girl, I never really realized the responsibility my parents faced raising three children – three healthy children. The only issues we faced were uncomplicated everyday problems.
Seven years ago, the only “unknown” we faced was our daughter Samantha’s allergies. She had a severe reaction to legumes and latex. We thought this was serious. Little did we know the challenges we were about to face. Soon, our life was to be turned upside down and inside out. Six years ago, while vacationing in Puerto Rico, our daughter, Robyn, was rushed to the hospital with blood sugar readings in excess of 1000mg/dl; she was in ketoacidosis.
Our simple, happy-go-lucky life soon came to a standstill. Now, glucose meters, insulin syringes, carbohydrate counting, and high and low blood sugar controlled our lives. Once your child has been diagnosed with diabetes, the family is in shock. Then the shock starts to settle and you discover there are many roads, or therapies, you can follow. There will be times when you will feel lost and alone. However, in time, these feelings will subside and you will reclaim the life you once knew . . .with a few alterations. My daughter was only 6 years old when she was diagnosed, so we made adjustments day-by-day. Today, we continue to modify her daily intake of food, exercise and medications as we see fit.
Several people influenced how our family began to accept Robyn’s diagnosis. Our pediatrician, Dr. Harry Banschick offered us a great deal of information – he assisted us in making the first choices in the treatment of this disease. Our nurse educator, Jo Nuzzo, was one of the first people to meet with my family after the initial diagnosis. She helped us to remember that Robyn was a child first, a child with the condition of diabetes. This was our first step to acceptance. My brother-in-law Glenn, a member of the medical profession helped me to realize that while diabetes is serious, it is treatable . . .it can be controlled . . .and there are many other conditions which are not as successfully managed.
The diagnosis of diabetes is devastating. The dynamics of this disease affect not only the family, but the entire community. Simple pleasures no longer seem simple. However, over time, we acquire knowledge and with that knowledge, our instinct to survive, flourishes. We look forward to that very special day, when the cure for diabetes is discovered.
Until then, we will continue to battle it . . .one day at a time.
Lisa Hendel, mother of Samantha, Robyn, and Melanie
A cure for diabetes is a priority in my life,
In the beginning, when diagnosed, we had much stress and strife,
A granddaughter, oh so beautiful, struck with the unexpected,
Without warning …comatose, and our lives were all affected.
Our hopes and dreams will come true in reality one day,
And diabetes will become a thing of the past,
This I hope and pray.
A cure for diabetes,
That’s what it’s all about,
Funds for research,
This disease must be wiped out,
With utmost progress,
Got to get right to the source,
Must go forward,
Moving with full force,
No steps unturned,
We’ve got to break through,
With help from researchers,
And volunteers like you.
My middle child, Stephanie, was diagnosed with Type 1 diabetes on November 11, 1994 at the age of 12 1/2. That was the day that my family’s life changed forever. Diabetes forced my husband and me to grow up. That sounds sort of silly, because we were already the parents of three children, one of whom had developmental delays and the eldest who was getting ready to graduate high school. But diabetes came into our lives and changed it forever.
The feeling of letting something happen to your child that you can not fix, is the most helpless feeling in the world. The idea of a disease that needs constant supervision with no end in sight is sometimes extremely overwhelming. So we grew up and we dealt with it.
Almost seven years later, I now recognize some of the side effects that my daughter has from living with this disease, 24 hours a day, seven days a week. I am not only speaking of the physical issues, because she is a very strong and mature young woman who is doing well, but I feel that she has been robbed of the childhood that was snatched away from her. I wish that I could have slowed down that process, but I know that most diabetic children with good control, are usually more mature than their peers.
My daughter is a sophomore in college now and doing great. I worry about her future and how this disease will potentially limit her possibilities. I started writing by saying that my husband and I “grew up” the day Steph was diagnosed, but I am ending by writing about how she had to grow up too fast.
She was a counselor at an overnight camp in the Berkshires this summer. After she came home she told me a story. A young camper who had been diagnosed with Type 1 diabetes a short time before camp had started, was introduced to Steph so they could get to know each other. One day the little girl came to Steph very upset. She had been testing her blood before lunch, as she did at every meal, and the other kids started telling her that it was disgusting and they didn’t want to see it. That part of the story was bad enough, but my daughter’s answer broke my heart even more. She told this child that unfortunately that was going to happen all through her life, and that it was something that she was going to have to face. Then they came up with some things that the young girl could say when it did happen.
What broke my heart was that I never knew that my child was used to dealing with the ignorance and insensitivity of others. I wrote about this small aspect of our lives with diabetes because it just happened. It is just a little thing really, compared to the whole package of life with diabetes, but I wanted to share it.
My close friend and her husband decided to spend the night in New York to celebrate her birthday. They felt confident leaving their 9-year old son in my care, as I also have a child with juvenile diabetes. I was so pleased to help my friends so they could relax and enjoy an evening on the town. It is not often that parents of a child with diabetes are able to leave their child overnight in the care of another person. Caring for a child with diabetes is constant. You never stop thinking about the next fingerstick, the next shot, the next meal, or the possibility that their blood sugar will go low. I had the major responsibility to lift that care off their shoulders for just one night.
I gave Josh his evening insulin shot, a combination of three different insulins – Regular (short acting), Humalog (fast acting), and NPH (long acting). He told me that he did not even feel the shot. I was thrilled. Everything was great. The kids were playing. I went to my bed to relax and read a book. I fell asleep with the television on, but shortly after 9:30 p.m., the telephone rang and woke me up. While I was talking on the telephone, I began watching the show, 20-20, about dreaming, the subconscious and anesthesia. My subconscious must have been alerted because I realized in a state of shock, that I had given Josh his morning insulin dose instead of his evening dose. The morning dose included a higher amount of NPH which works for 12-15 hours and peaks during hours 4-6. Panic set in…. We could have ended up in the hospital if I did not handle this right.
I immediately checked his blood sugar level, which was fine for the moment, but my major concern was the NPH dose which would not “kick in” for another four to six hours. I was up all night checking his blood sugar every hour while he slept. I gave him juice to drink to raise his blood sugar when needed. I did not sleep for one minute that night. I cannot even tell you how awful I felt. I did call my friend’s husband to tell him what I had done. I asked him not to tell my friend so she could have a Happy Birthday. I believe he never told her what happened until they got home.
Six years ago, during spring vacation, we were driving home from Baltimore to New Jersey. Eve-Lynn needed to stop at every rest stop to go to the bathroom. My heart sank when my husband remembered that his aunt had diabetes. We just happened to have a doctor’s appointment the next day for a physical. After a urine sample revealed high levels of glucose, Dr. Joffe, our beloved pediatrician, sent us directly to Saint Barnabas Hospital. I immediately called my husband and my mom. Eve spent the rest of spring break in St. Barnabas Hospital. The next day we were to celebrate my youngest daughter Diana’s first birthday. Our new life was beginning…
Despite the difficulties of living with diabetes, there are some positive aspects:
Eve-Lynn is my hero
My granddaughter, Eve, was diagnosed with diabetes at age 10. It is hard to believe that she has reached the age of 17 and that I am now watching her drive, shop at the mall, and prepare for college. She is really special!
For now, Eve goes about her life as a teenager. I know she has her own particular struggles. A visit to the dentist and having wisdom teeth pulled becomes a major medical event. For a diabetic teenager highs and lows do not refer to partying and having a good time. It is hard to see an adolescent “dare the disease” and forget the consequences.
Diabetes is a “shot” that the whole family takes. The “family dance” is different from that of other families. I know that it has been difficult for Susan and Alan to always look ahead and be prepared. I know for them going out to dinner or going on vacation is never without planning or thought. It is never with a mind or a heart that is fully at rest.
As a grandmother, I hope all good things lie ahead for Eve. I have gained so much courage and respect watching my daughter Susan and her husband Alan cope with this illness. I know Eve will be more empathic to the suffering of others. She understands that no one truly knows how it feels unless you are in their shoes.
My grandson, Daniel Honig, contracted Juvenile Diabetes when he was 6 years of age. It was the Mother’s Day weekend of May 1996. Since 1996, life has changed for my family and me in ways I never thought possible.
We are watching this beloved child cope day to day with sticking needles into himself and constantly listening to the “numbers”, worrying whether they are too low or too high. We are constantly making sure that he eats or does not eat, and does not run barefoot. I wonder, “Is he sick? Does he need an antibiotic? Is he wearing his bracelet?” These are all of the worries of any parent, and grandparent of a child with juvenile diabetes.
I watch my daughter cope in ways that I never thought she would have to cope. I am so proud of my child and her efforts to deal with this disease and her ability to maintain her sense of humor. She has given me the ability to share her the belief that this will end, and this child will resume a “normal” life.
It hurts to stand by and watch what they have to handle and feel that all I have to offer is my love.
Tanya and Charles Tabak
I was diagnosed with diabetes 40 years ago at the age of four. The therapies and treatment for diabetes were much less advanced in 1961 than they are today. I took one shot a day of NPH and regular insulin and tested my urine to measure my sugar level.
Though I stayed away from sweets, I went into a diabetic coma at the age of 20 with a blood sugar level of over 1,000. We would later come to realize that this amount of sugar in the blood would damage all the small blood vessels in my body. The following year, I lost the eyesight in my right eye after an unsuccessful vitrectomy.
Seven years later, my left eye hemorrhaged and started growing a cataract. At the age of 34, while being evaluated for a kidney transplant, my cardiologist discovered four blocked arteries in my heart and performed a quadruple by-pass that took me a year to recover from. Two weeks before the heart surgery, I went on dialysis.
I became very sick while waiting for the transplant. During my two-year wait, I had 54 blood transfusions and was hospitalized 14 times in one year with a wide variety of diabetic-related problems.
In February 1994, I became the 17th person to have an experimental simultaneous kidney/pancreas transplant. I was hospitalized for two months with a wide variety of complications from the surgery. That surgery also took me a year to recover from.
Now I am enjoying a somewhat healthier life without diabetes. The pancreas and kidney are both working fine! Though I don’t take any insulin shots anymore and NEVER check my blood sugar levels, I take 31 pills a day. I still have periodic insulin reactions, but for the most part, my blood sugar level stays in the normal range. I have since gone back to work and live a fairly normal life. I have had a sneak preview of what life will be like when a cure is found and it is wonderful!!
My daughter, Marcia, was diagnosed with diabetes at the age of four. I had to learn how to deal with this new situation, including insulin injections and sugar testing, in addition to new nutritional ways.
Her first day in kindergarten, I practically attacked Marcia’s teacher with all kinds of instructions for her well being. Marcia met other children who had diabetes when she attended Camp Nejeda. There she developed good eating habits and learned how to inject herself with insulin.
Diabetes never stood in the way of accomplishments. Marcia graduated from college with a double major in physical and health education. She went on to graduate school and received a Master’s Degree in Recreation and Administration.
Unfortunately, diabetes caused health problems that occurred over time. Despite keeping good control, Marcia had vision, foot, and kidney problems that developed. She needed dialysis three times each week.
More than seven years ago, Marcia received a pancreas and kidney transplant and now, she no longer has diabetes.
Marcia has been happily married for seventeen years to a wonderful man. She is currently working full time in sales.
I have always been proud of my daughter Marcia. Although she has had to endure many health problems, she has conducted herself with dignity and pride. She is truly a special person!
Most people’s days start when they wake up after a long night sleep. My day doesn’t. All night my mom sneaks into my room to check my blood sugar. She thinks I’m sleeping while she does it, but I’m not. As soon as the needle pricks my finger, I wake up only to fall asleep and wake up again the next time my blood sugar is checked.
Every time a piece of food enters my mouth, I have to stop and think about how many carbohydrates it has and the correct amount of bolus units with my insulin pump. Most people just sit down and eat a sandwich or a snack, I have to think about it, not just do it.
If I am at school and I have to go eat lunch, I have to first make a stop at the nurse’s office to check my blood sugar so that it won’t be too high or too low. Then it is hard for me to find where all of my friends are sitting in the cafeteria because it is packed with people. My friends can just walk in and sit next to each other, but I have to look around the room to find them.
When I go to gymnastics practice I have to disconnect from my insulin pump and check my blood sugar in the middle of a routine and bolus (release of a certain amount of insulin) are correct or eat a snack. If I don’t, I will have a high or low blood sugar at the end of gymnastics, not a normal one.
When I am about to fall asleep, thoughts run through my mind about whether or not I will wake up in an hour or two when my mom walks in and checks my blood sugar.
Maybe one day I won’t need to wake up at night thanks to a breakthrough in science. I guess I’ll just have to wait and see.
Through a Child’s Eyes
I wake up in the morning, check my finger and hope for the best
I guess I am different from the rest
Checking myself 8 times a day
Taking three shots, there must be a better way
I have to watch everything I eat
Or my body does things that aren’t very neat
Exercise, food, and weather too
Can change the way that I feel and there’s nothing I can do
(God help me if I get the flu)
The complications that may arise
Have definitely changed all of our lives
Worrying all day and no sleep at night
Thank God for my parents who took on this fight
I do look around and think it could be worse
But this disease is definitely a curse
With all of your support there is hope for a cure
For this is something that no one should endure
Don’t get me wrong, I am a happy little boy
But life without Diabetes would be such a joy
No checking, no jabbing, and eating to my delight
God I hope a cure is in sight.
I am a mother with a 10-year-old son who has had diabetes since his 6th year. It happened the summer my husband and I celebrated our 10th wedding anniversary. We had just gotten back from our family vacation at Disney World. Looking back at our photos, and thinking about how Matthew was feeling in comparison to our daughter and ourselves, I can’t believe we didn’t notice the signs earlier. We will always remember that summer as the summer that changed our lives forever!
A 10 year old boy should not have to worry about how much ice cream to eat, or what time of day to have it. I do not remember when food was ever an issue in my childhood. My son can’t wait for the day when he can eat whatever he desires, and whenever he desires it!
It is heartbreaking to watch his face when he pricks his finger at least 4 times a day, and gets a shot 3 times a day. We once worried about the pain from the routine shots at the pediatrician’s office, but now that is a piece of cake! Matthew can’t wait for the day without blood checks and shots. He said his life would be easier, and freer. We wouldn’t have to pack a bag with tablets, juice, snacks, meter, etc. every time we go out. His family could also live without the anxiety of “What if?” when he is not with us.
Until that day when a cure is found, we have to keep him healthy, happy, and responsible to live through what has now become a routine.
I finished my pediatric endocrine fellowship in 1982 and have been caring for children and families with diabetes ever since. I watched the children test their urine for a few years and then switch to self-blood glucose monitoring. I was a physician when the newer purified pork insulin became available, followed by human insulin and now lispro insulin and glargine. Although the early attempts at pump therapy were not so widely acceptable, I have watched with awe as children in the recent ten years have adapted so well to this form of therapy.
I estimate that I had to tell at least 25-30 children and families each year over the last twenty years that their child has diabetes. In my immediate family I have no-one with diabetes but every day for the last twenty years I have watched people I care about enormously, deal with the frustrations, fears, confusion, anger, and depression that comes with living with a child with diabetes. I too, have become frustrated, angry, afraid, and sad. Some of my most meaningful professional and personal experiences with the disease have come from attending diabetes camp with children with diabetes, where I never fail to be touched by their bravery and kindness.
I hope and hope that the next few years will bring revolutionary changes in the way we replace insulin in children with diabetes. I hope that the continuous glucose sensor can be hooked up to the insulin pump and make blood sugar testing a thing of the past. Ultimately, I hope that transplanted cells (or cells reprogrammed to become islet cells) can restore normal pancreatic function. In the mean time, we all need to remain committed to the children and their futures.
Irene N. Sills, MD
Associate Professor of Pediatrics
Albany Medical College
Albany, New York
Sometimes I hate having diabetes because . . .
I have to get shots
I get dizzy when my blood sugar is low
I get tired faster than other children do
I could one day become blind
I can loose control if my blood sugar is not monitored
My blood sugar is not always in good control and I can get into very deep danger without even noticing it
I hope I won’t die because of this disease
I want to be healthy!
One of my earliest memories is of a day when I was three years old. I do not remember many of the details, but I have a lasting impression of a hospital room where there was a bed, as well as a crib with bars. I was asked to choose which I preferred, but could not make up my mind for a long time. Finally, I chose the bed. I think it was because I did not want to be restricted by the bars surrounding the crib.
It was in this bed that I learned that my daily routine had changed and ironically, I would be surrounded by some kind of bars for the rest of my life. It was discovered I had Type 1 diabetes. I would now have to take daily blood tests and insulin shots. However, from these earliest days, my family and I were determined that diabetes would not lock me up behind “bars.”
It may seem strange to say, but as I grew older I could see some positive things about having diabetes. It taught me that I need discipline, as well as courage, to overcome obstacles. It taught me that my friends would help me in a world at odds with diabetes. For example, birthday parties, sleepovers, school schedules – all of these things had to be carefully planned thus I frequently had to eat something to prevent a dangerously low blood sugar reaction. Sometimes this planning was difficult because most people were not used to eating at set intervals and therefore did not understand how important it was to my health. From this I learned that my friends were those people who had compassion for me and who were willing to help me do everything they could to keep my disease under control.
Diabetes is a chronic, complicated, and destructive disease. I may never outgrow it. My only hope is a cure. Luckily, more progress has been made with this disease in the last five years than in the previous one hundred. Hopefully, a cure is near and others will not have to deal with diabetes. It requires a total lifestyle change but overall, I think it has made me a stronger person. I have refused to let it take control of my life.
My life has been affected by diabetes in several ways. First and most importantly, I learned how precious life is. I was diagnosed at the age of twenty and I was terribly horrified! I had just gotten married and what a blow this was. I realized from the beginning, I had to educate myself with regards to this illness. I have learned that you must become very involved in your diabetes care.
Having stayed in very good control for many years, I have come to see the advantages. Now I am watching our three grown up children become solid citizens in their own communities. All three have been trained to watch for any signs of diabetes and are being tested regularly.
I started using the insulin pump two years ago, and it has changed my life. I hope anyone reading this will be able to get information on the pump from a health care provider. Whenever I feel down and out, I have a little saying that usually makes me feel better. “Just remember, it could be worse”. Stay Well.
When I was five, I was diagnosed with diabetes. I was in the hospital for two days. It was really scary. I am now 10 years old. Now I am use to all of the needles.
When I first got diagnosed with diabetes I was really scared of the needles and doctors, but after a while I got use to it. All I did was sleep and have a lot of blood tests done. I still do not like getting blood tests done.
What I like to do in my life is read, sleep, play computer games, draw, write, play softball, swim, and hang out with my friends.
Ariel Glick, 10 years old
It is midnight, I am tired. The day doesn’t seem to end. I’m still awake thinking what will be my plan for tonight. At last checking, Asaf’s blood sugar level was 80. I’m thinking that his blood sugar might drop during the night. I’m setting the alarm clock for 1:00 a.m.
With my eyes almost closed, I arrive at Itai’s room. He is on an insulin pump. He seems okay, but something tells me that I must check his blood sugar. The countdown starts. I wait 15 seconds, the result is 432. I’m trying to check the infusion site, but I’m too weak to see. I go downstairs and prepare a shot. I get back in bed. The time is 12:35 a.m.
“Ring, ring!” The alarm goes off at 1:00 a.m. I am dizzy, but still know that I need to check Asaf’s blood sugar level. I’m doing his fingerstick and feeling how hard it must be for my children to deal with this disease. Shots, blood tests, diet, everything by schedule. Even when you do everything by the book, the results might not be the ones that you are expecting.
The countdown starts: 30, 29, 28 – His blood sugar level is 56. I’m going down the stairs again, opening the fridge and getting a juice. I’m calling, “Asaf, Asaf, drink the juice.” He takes the straw between his lips, tries to drink, but falls asleep. After a couple of seconds I have to wake him up again. Finally he finishes his juice. I give him a little bit of water and go back to my room. It’s almost 1:20 a.m. I set the alarm clock to 4:00 a.m.
“Ring, ring!” (4:00 a.m.) I’m so tired, I’m thinking of skipping this blood sugar test, but I know that it is necessary. If the infusion is clogged and needs to be changed, Itai might need another shot.
Half asleep, I open Itai’s glucometer. His sugar is 382. I know that we need to do another shot and change the infusion in the morning. I run downstairs and prepare the shot. I wash my face to make sure that the dosage is right and go on my way upstairs. Itai doesn’t seem to feel that I gave him a shot. That makes me smile. I go back to bed. It is 4:35 a.m.
“Ring, ring,” The alarm went off. Now it is 6:30 a.m. The children have to go to school and I need to go to work. I do Itai’s blood test, 245. Asaf’s sugar is 195. I prepare Asaf’s shot and get the infusion ready. The infusion is ready. Itai is not happy, but he goes to his room and changes it. Asaf gets his shot. I’m measuring breakfast. We are ready to start the day.
When I arrive at work somebody asks me, “How are you?” I say, “Ok, thank you!” I don’t think that I do anything out of the ordinary. I do whatever is necessary for my children to grow healthy. The instant that I brought my babies into the world, I knew that I would move mountains and cross-oceans for them. I work very hard to get closer to the day that my children will go through the day and the night like regular children and that a cure will be found for them and for all the children in the world.
Mother of Asaf and Itai
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