So, along this diabetes journey I have learned so much about my daughter. Throughout her life we have tried to protect her, as most parents do their children. I remember right before she was diagnosed with Type 1 we had called every pharmacy within 2 hours looking for flumist (the nasal flu vaccine) so that she would not have to undergo the flu shot. You see, unlike her sister, she has always had such fear and panic over medical encounters, and especially shots. I remember feeling the irony when just a few weeks later she was diagnosed with a condition that would require four shots daily. Kids are programmed so differently, and I have been blessed enough to have one daughter who allowed her forehead to be stitched up without anesthesia and who laughs when she gets a flu shot, to her sister who reacts as I've already described. I say that I have been blessed because it has taught me so much empathy as a physician. I have often listened as staff have talked with disgust of the child that must be held down for shots, or who panics when he needs even a rapid strep. Oh, I think to myself...they don't have one of those children. I do, and since I also have her fraternal twin who has been raised exactly the same way and yet handles things so differently, I appreciate the genetic differences between children. And, perhaps just as importantly I also appreciate the stress and embarrassment their parents feel when they take them to the doctor. We have tried many different ways to handle her fears throughout her life, and thus have spent a great deal of time trying to protect her from those situations she fears so much.
What it took diabetes to teach me was that she is actually the bravest little girl I know. Behind that veil of terror and panic is a child made of steel. A child who is not afraid to be different, a child who has stood up to mean accusations as to why she has diabetes, a child who checks her blood sugar 10-14 times a day (which is more than any of my adult patients), a child who gave herself 4 shots a day, and a child who tonight inserted her own site and did every step of a site change at the young age of 8.
But, she doesn't always look brave, and it took diabetes to teach me how to help her realize how brave she is. I remember back to when she was first diagnosed. She would cry and beg us not to give her the shots. She then came up with this routine where she would count to 100, then tap her fingers all before we could give her the shot. All the while she would be shaking and sweating. A good friend reminded me at that time that I should be happy she had found a way to cope. This was good advice, but what I didn't realize until recently was that allowing her to do those things was actually the worst thing we could have done. What I have learned about Jessica is that for her the "before" is so much worse than the "after." She is a child who is consumed by fear so much so that she visibly shakes and sweats, but when the experience she is so afraid of is done she immediately is relieved and moves on without a look back.
We spent weeks trying to compassionately help Jessica give herself her first shot. She was so close so many times...her little hand shaking as she tried so hard to do it. Many times I reassured her that it was ok she wasn't ready, only to watch her try over and over night after night. How surprised I was when we went to a family support weekend and one of the counselors watched Jessica trying and then assertively, forcibly told her "Put it in!, just put it in!" I watched with shock as she did it. It was then that I realized for the first time that perhaps the kind, gentle approach I had always taken with Jessica was not actually helping her at all.
Tonight, for the first time she announced "I want to do a site change." I don't know what sparked this decision, and I have to admit I was definitely more than a little nervous as our pump trainer had told us the average age kids attempt this is around 12. But, I was not about to dissuade this interest. I led her through step by step all the preparatory steps and she did amazing. Then the time came to actually insert the set. We have the spring loaded sets, and I have to admit they even make me a little nervous with their quick and somewhat loud insertions. Jessica panicked and cried and begged me not to make her go through with it. But, I have learned. I saw through the tears and the pleas and realized that what she needed was not for me to tell her it was ok, and we could try again later. What she needed was for me to tell her that she is braver than she realizes, and that she can do it, and that she would do it. I did not back down, and even though it killed me to hear her cry and plead, I told her assertively that she would do it, and as I told her "push the button now!" she did it! I don't know if she was more surprised or I when we realized she had done it. She looked at her site with such pride and such relief. She proudly called her grandparents, and she instructed me to tell her diabetes care provider as she was just so proud of herself.
Thanks to diabetes and the lessons learned, we did not go through weeks of watching her suffer as she tried so hard to insert her own site. She did it the first night. I wouldn't know my daughter so well if not for diabetes. And, I don't think she would know herself so well either. I remember when I first met my husband I was so surprised when he told me that diabetes was his biggest strength. I didn't fully understand then, and maybe I still don't, but I think I am closer to understanding. I wish with all of my being that Jessica had not been given this burden of diabetes. Type 1 is a relentless, unforgiving disease. But, I can also see that it too might end up being her biggest strength.
Wednesday, January 26, 2011
Wednesday, January 5, 2011
A New Start
Time has flown and I have not emotionally been in a place where I could write. We went through a very rough fall and learned some very big lessons. This summer we had the huge gift of attending a Family Support Weekend for families living with diabetes. It was an amazing, life changing experience. While we were there we couldn't help but notice pumps, pumps, and more pumps! In fact, it seemed that every child with diabetes except our own was on a pump. The weekend was filled with wonderful classes, and deep bonds were created. We left the weekend with a new deep understanding of how much better Jessica's life and our own lives could be on pump therapy. The other wonderful thing that happened was I realized that while I had always thought Jessica wearing a pump would bother me I no longer was afraid it would. I met so many beautiful, happy, healthy children with their cute pump packs, spy belts, and big silly grins. I realized that I didn't see the pumps, but instead their big personalities and heroism. I had always been worried that if Jessica were actually attached to a pump I could no longer deny on any level that she was different. In between shots it is easy to deny this beast, easy to pretend life has not so dramatically changed. But a pump would be a constant, daily reminder. I had not, until that weekend, seen what the trade off was and that it would actually free Jessica from this beast in so many ways.
Armed with knowledge and full of optimism we went to our next follow up diabetes appointment and asked about pump therapy. We were coming quickly to the one year anniversary of diagnosis and I was anxious to take steps forward. We had been on a consistent carb plan (45 grams of carbs with every meal, rigid snacks of 15 grams each) and absolutely no flexibility. I was exhausted from telling Jessica that she couldn't eat when she was hungry. I was tired of telling her that diabetes wouldn't stop her and she could do anything, while at the same time constantly telling her no to all the other foods kids ate in front of her. I now had a glimpse of what life with a pump could look like and I was ready.
Unfortunately, our diabetes team was not. I could describe in great detail the barriers we faced, the tears that were shed, the sleepless nights wondering if we would ever be "allowed" a pump. I remember with great heartache Jessica asking us "Why won't they let me get a pump? Have I been bad?" We struggled and were paralyzed with what to do and where to go. Irrational thoughts would enter my consciousness such as moving to be near the best diabetes care in the country. But, where was that? It was so hard to know where to go, and whether it would be any different there.
And, then, as life has a habit of doing, it worked out. I came across the name of an old medical school classmate. I last saw him over 13 years ago at our wedding and haven't spoken since. Luckily for us, he ended up becoming a pediatric endocrinologist within two hours of us. We transferred care, and I kid you not, within two weeks Jessica had her pump.
Starting a pump is a blog entry all unto itself, but here is the lesson learned. If you know, deep in your heart, that your child's diabetes team is not a good fit, move on. This relationship, like others, is hard to break, but break it you must. The Children With Diabetes website has a column on how to know if you are receiving standard of care. Look at it. If you are not, move on. This disease is hard enough to live with without having a diabetes team that you trust, and that you can work together with.
We love Jessica's new team. Jess runs and hugs her nurse practitioner when she sees her, and my old medical school classmate is now her pediatric endocrinologist. It is reassuring to see him, and I trust him. He and the nurse practitioner are a team, and the nurse practitioner is my daughter's new cheerleader. She tells me she is counting on Jess to become the doctor who discovers a cure for diabetes. She reminds Jess every time she sees her that she is "Jessica- a beautiful, smart, wonderful girl who also happens to have diabetes...NOT Jessica, the girl with diabetes." Our new team has given me hope, and I felt a huge weight lift ever since we transferred there. I wish this for every family living with a child with diabetes. Until there is a cure, we deserve, at least that.
Thursday, July 22, 2010
Protecting Childhood
I worried when Jessica was diagnosed that she would lose her childhood. Of course, as fate would have it, she was diagnosed right before Halloween. There is no good time to be diagnosed, but we had already picked out costumes and Jessica had begun dreaming of bags and bags of candy. We coped as we had to. We read a book to Jessica about celebrating Halloween with diabetes. My mommy guilt fostered creativity, and the "Halloween Fairy" paid a visit, leaving a path of glitter across the kids' bedroom floor. Jessica still had fun trick or treating with her friends, and then both her and her sister saved 5 pieces of candy and put the rest in a bag that they decorated for the Halloween Fairy. I woke that morning to the gleeful sounds of their laughter and squeals as they saw not only the glitter path, but the presents that had been left in return for the candy. One big, huge milestone was successfully crossed.
Of course, the hurdles continued and many more lie ahead.
It has been an interesting year. I never realized how much every holiday revolves around food until Jess developed Type 1. Suddenly, the holidays were not just to be looked forward to. They were each a challenge to figure out how to maintain their magic, all while keeping Jessica on a strict meal plan. Candy and donuts poured into Jess's classroom and car rides home were full of tears of what no longer was to be. But, we survived and we learned from each experience.
Suddenly, the school year was ending and the big question loomed...what would we do about the summer? Jess and her sister have always gone to summer camp. They love it. They love meeting new friends, and all the fun summer camp brings. I don't think it ever even occurred to Jessica that she wouldn't go to camp this summer. My husband and I explored resources and struggled with what to do. I remember being so frustrated as I could not find anyone else who had sent their Type 1 diabetic child to summer camp...normal day camp...not the one week diabetes sleepover camps that I know are amazing, but leave working parents with the question of what to do with the child the rest of the summer. We called the local camps. None of them have nurses, and one downright refused to take her.
We took the leap and with great fear enrolled her in a local day camp. The beginning was incredibly rough...a future post will provide details and recommendations. I arrived at work crying and shaking with fear that I would be getting a call any moment that she was on her way to the hospital in an ambulance. The camp counselors are not allowed to use glucagon. If she gets that low then no one could help her and the ambulance would be called. She was only 7 and the camp counselors and director had no experience or knowledge about diabetes. We and a good friend have taken turns going at lunch to give her an insulin shot and check on her. It has been a terrifying summer.
But, with now only two weeks left of camp, I can take a step back and look at the victories and the growth that have developed. I have always felt that without fear and uncertainty there can be no growth. This summer has demonstrated that beyond leaps and bounds.
Jess has done it, She has learned to manage her diabetes almost entirely by herself. She came home one day so excited to tell us that there had been ice pops at camp. She had asked to see the box, looked at the serving size and carbs, and made the decision that since they were only 3 grams of carbs she could have one. We were blown away. I can't even teach half of my adult patients that concept. She has managed her lows. She has managed the increased activity of camp by adjusting what she eats. While we are not out of the woods yet, and I am still nervously counting down the last two weeks of camp, Jessica's accomplishments have surpassed our wildest dreams.
And tonight, we nervously checked her HgbA1c, and were surprised and elated to see the number 7.3 pop up on the screen. We had decided that it was more important to us that Jessica have a normal childhood this summer then have good blood sugar control. Once again, she surprised us and was able to do both.
Do not let diabetes stop your child. They can do anything at all if you just help them. Children are capable of so much if we give them the freedom and wings to obtain it. Support them, problem solve with them, and believe in them. But, don't let diabetes steal their childhood. It doesn't have to.
Of course, the hurdles continued and many more lie ahead.
It has been an interesting year. I never realized how much every holiday revolves around food until Jess developed Type 1. Suddenly, the holidays were not just to be looked forward to. They were each a challenge to figure out how to maintain their magic, all while keeping Jessica on a strict meal plan. Candy and donuts poured into Jess's classroom and car rides home were full of tears of what no longer was to be. But, we survived and we learned from each experience.
Suddenly, the school year was ending and the big question loomed...what would we do about the summer? Jess and her sister have always gone to summer camp. They love it. They love meeting new friends, and all the fun summer camp brings. I don't think it ever even occurred to Jessica that she wouldn't go to camp this summer. My husband and I explored resources and struggled with what to do. I remember being so frustrated as I could not find anyone else who had sent their Type 1 diabetic child to summer camp...normal day camp...not the one week diabetes sleepover camps that I know are amazing, but leave working parents with the question of what to do with the child the rest of the summer. We called the local camps. None of them have nurses, and one downright refused to take her.
We took the leap and with great fear enrolled her in a local day camp. The beginning was incredibly rough...a future post will provide details and recommendations. I arrived at work crying and shaking with fear that I would be getting a call any moment that she was on her way to the hospital in an ambulance. The camp counselors are not allowed to use glucagon. If she gets that low then no one could help her and the ambulance would be called. She was only 7 and the camp counselors and director had no experience or knowledge about diabetes. We and a good friend have taken turns going at lunch to give her an insulin shot and check on her. It has been a terrifying summer.
But, with now only two weeks left of camp, I can take a step back and look at the victories and the growth that have developed. I have always felt that without fear and uncertainty there can be no growth. This summer has demonstrated that beyond leaps and bounds.
Jess has done it, She has learned to manage her diabetes almost entirely by herself. She came home one day so excited to tell us that there had been ice pops at camp. She had asked to see the box, looked at the serving size and carbs, and made the decision that since they were only 3 grams of carbs she could have one. We were blown away. I can't even teach half of my adult patients that concept. She has managed her lows. She has managed the increased activity of camp by adjusting what she eats. While we are not out of the woods yet, and I am still nervously counting down the last two weeks of camp, Jessica's accomplishments have surpassed our wildest dreams.
And tonight, we nervously checked her HgbA1c, and were surprised and elated to see the number 7.3 pop up on the screen. We had decided that it was more important to us that Jessica have a normal childhood this summer then have good blood sugar control. Once again, she surprised us and was able to do both.
Do not let diabetes stop your child. They can do anything at all if you just help them. Children are capable of so much if we give them the freedom and wings to obtain it. Support them, problem solve with them, and believe in them. But, don't let diabetes steal their childhood. It doesn't have to.
Tuesday, July 20, 2010
Surviving The First Thirty Days
Welcome to the Type 1 Diabetes Club. It is a club you desparately want
out of, never wanted to belong to, and yet here you are. And, I hope this helps you get through this first month. If you are like most of us who have been initiated into this club, your world has been shattered, your mind is spinning, and you are not sure things will ever be right again. I, and many others, have made it through and I can tell you that things will be ok, but I hope this helps you make it through the first 30 days when it might be hard for you to realize that. My daughter was 7 when she was diagnosed, so a lot of my advice relates to young children being diagnosed. Some of it is applicable to families dealing with a diagnosis at any age.
So, lets get started. This is what I wish I had known.
I still remember the despair I felt sitting in the Emergency Room the night of my daughter's diagnosis. You may be feeling similar emotions, or emotions that are just as bleak but different. Anything you feel right now is normal. In general people facing the diagnosis of diabetes in their child go through denial, grief, anger, and depression. Based on my experience the phases werenʼt as orderly as the books lead you to believe. I felt as though I were in this bleak existance floating between denial and such despair.
Here are my practical recommendations for starting to heal in these first 30
days:
1. Be kind to yourself.
2. Try to accept that this is what life has handed you, and you will define
yourself by how you handle this. And, you can handle it well.
3. Know that your child will give you strength and become your biggest
hero.
Iʼd like to share with you a poem my daughter wrote 2 days after
diagnosis:
Diabetes makes me mad and happy
But mostly sad
How can I get through this way?
I just have to get through this day.
I hope I see the stars.
Then I want some chocolate bars.
Because sometimes the stars can make a shape like a chocolate bar.
Diabetes really hurts.
But sometimes I may burp.
I like this rhyming song.
And I like to rhyme along.
However your child chooses to express themself, you will be amazed by
how they handle this. I have been a Family Physician for many years, and
what has always overwhelmingly stricken me is that children always
handle chronic illnesses they get better than their parents. So, I feel
confident telling you that you will get strength from your child. As you
watch them learn to process and handle this you will gradually feel better.
4. Know that the beginning is the worst. The first blood sugar checks, the
first planned meals, the first shots...they are horrible. Just know they will
be.
5. Do only the bare minimum in every other aspect of your life for the first
few weeks. Recruit help. Even if you have never asked for help before
this is the time to do it. Tell people what you need. Donʼt make them
guess or they will guess wrong.
6. Try to give yourself ten minutes a day where you take a vacation from
diabetes. This will be hard at first as it consumes you. But it is important.
For me it was reading a romance novel while I blew dry my hair. Donʼt be
surprised if you have to keep re-reading the lines, but at least go through
the exercise.
7. Start seeking out a support group. Go to Juvenation, this is a
Facebook equivalent for Type 1 diabetics and their families. The JDRF
has a link to pen pals you can get for your child. See if your doctorʼs
office knows of a support group. Reach out---you will feel so much better
talking to others that have been here and made it out to the other side.
8. Know that this despair and these feelings wonʼt go on forever. There
will come a day when you wake up and things arenʼt so black. You will
realize that while things are not normal, they are a new normal and they
are ok. If you donʼt start noticing that things are better after the first 30 days
talk to your doctor. You may be depressed and it will help you, your child,
and your whole family if you get help for this. It is common and it is
treatable. You are going to need to feel your best to take care of your child.
9. Get a food scale and a good one. We have one that comes with a book with every imaginable food. You enter the code for the food, weigh the food, and push carbs and it gives you the number of carbs in the food.
10. Streamline the carb counting. Here's what I mean...I learned very quickly that 84 grams of grapes=15 grams of carbs. Pick your child's favorite food and learn how many carbs are in it. Label your boxes if that helps. One of the most helpful things anyone did for me was when my mom went through our pantry and wrote on our food boxes. For example, she put 5 crackers=15 grams of carbs. She did this for almost everything in my pantry. We don't do it now as we tend to buy the same things and have learned how many crackers or how much cereal equals one carb choice, but in the beginning it made things so much easier. I found carb counting initially very overwhelming, so anything you can do to make it easier helps.
11. Know that if your child is like mine they will be STARVING in the beginning. Jessica was constantly begging for food. When we went back for our follow-up they said "Oh yeah, we forgot to mention that kids are starving when they are first put on insulin." We went through bags and bags of string cheese that first month---come up with some carb free foods that you can give your child when they are starving and have already eaten all their alloted carbs.
12. Know that your child's crying or screaming or begging when you are about to give them a shot is just their way of coping. A good friend told me "aren't you glad she has found a way to cope?" It may be unpleasant, but that is really what your child is doing. They are just coping with the shots they must now endure. And soon she or he will find a more pleasant way to cope.
13. Don't forget your non-diabetic kids. This is scary for them and they may be feeling guilty. A lot of siblings wonder why their sister or brother got diabetes, instead of them. If your child is young, make sure you tell them it is not their fault and it was nothing they did. Young children often feel responsible for things they shouldn't. Try to spend some time touching base with them and seeing how they are doing too.
14. Make sure you arm your child with knowledge. My daughter's first day back she was greeted about questions as to why she got diabetes...did she eat too much candy? There is an excellent book called "Taking Diabetes to School," that we went with our daughter to read to her class her first day back. Depending on how old your child is this is something you should consider.
15. Try to keep doing all the things your family did before. They may have to be modified, but don't let diabetes take what you and your child enjoy away from you. My husband has lived with Type 1 diabetes for over 20 years---he has traveled to desolate parts of the world, gone through medical school and residency and has also become a Family Physician, and never let diabetes stop him. Don't tell your child they can't do something because of diabetes...ask them how they will do it. We love to travel and so we planned a short weekend away soon after my daughter was diagnosed. Proving to ourselves we could successfully still travel all while managing her diabetes was a huge sense of relief. Look at what your family likes to do and make an effort to keep doing it. Diabetes can be intimidating, but don't let it win!
out of, never wanted to belong to, and yet here you are. And, I hope this helps you get through this first month. If you are like most of us who have been initiated into this club, your world has been shattered, your mind is spinning, and you are not sure things will ever be right again. I, and many others, have made it through and I can tell you that things will be ok, but I hope this helps you make it through the first 30 days when it might be hard for you to realize that. My daughter was 7 when she was diagnosed, so a lot of my advice relates to young children being diagnosed. Some of it is applicable to families dealing with a diagnosis at any age.
So, lets get started. This is what I wish I had known.
I still remember the despair I felt sitting in the Emergency Room the night of my daughter's diagnosis. You may be feeling similar emotions, or emotions that are just as bleak but different. Anything you feel right now is normal. In general people facing the diagnosis of diabetes in their child go through denial, grief, anger, and depression. Based on my experience the phases werenʼt as orderly as the books lead you to believe. I felt as though I were in this bleak existance floating between denial and such despair.
Here are my practical recommendations for starting to heal in these first 30
days:
1. Be kind to yourself.
2. Try to accept that this is what life has handed you, and you will define
yourself by how you handle this. And, you can handle it well.
3. Know that your child will give you strength and become your biggest
hero.
Iʼd like to share with you a poem my daughter wrote 2 days after
diagnosis:
Diabetes makes me mad and happy
But mostly sad
How can I get through this way?
I just have to get through this day.
I hope I see the stars.
Then I want some chocolate bars.
Because sometimes the stars can make a shape like a chocolate bar.
Diabetes really hurts.
But sometimes I may burp.
I like this rhyming song.
And I like to rhyme along.
However your child chooses to express themself, you will be amazed by
how they handle this. I have been a Family Physician for many years, and
what has always overwhelmingly stricken me is that children always
handle chronic illnesses they get better than their parents. So, I feel
confident telling you that you will get strength from your child. As you
watch them learn to process and handle this you will gradually feel better.
4. Know that the beginning is the worst. The first blood sugar checks, the
first planned meals, the first shots...they are horrible. Just know they will
be.
5. Do only the bare minimum in every other aspect of your life for the first
few weeks. Recruit help. Even if you have never asked for help before
this is the time to do it. Tell people what you need. Donʼt make them
guess or they will guess wrong.
6. Try to give yourself ten minutes a day where you take a vacation from
diabetes. This will be hard at first as it consumes you. But it is important.
For me it was reading a romance novel while I blew dry my hair. Donʼt be
surprised if you have to keep re-reading the lines, but at least go through
the exercise.
7. Start seeking out a support group. Go to Juvenation, this is a
Facebook equivalent for Type 1 diabetics and their families. The JDRF
has a link to pen pals you can get for your child. See if your doctorʼs
office knows of a support group. Reach out---you will feel so much better
talking to others that have been here and made it out to the other side.
8. Know that this despair and these feelings wonʼt go on forever. There
will come a day when you wake up and things arenʼt so black. You will
realize that while things are not normal, they are a new normal and they
are ok. If you donʼt start noticing that things are better after the first 30 days
talk to your doctor. You may be depressed and it will help you, your child,
and your whole family if you get help for this. It is common and it is
treatable. You are going to need to feel your best to take care of your child.
9. Get a food scale and a good one. We have one that comes with a book with every imaginable food. You enter the code for the food, weigh the food, and push carbs and it gives you the number of carbs in the food.
10. Streamline the carb counting. Here's what I mean...I learned very quickly that 84 grams of grapes=15 grams of carbs. Pick your child's favorite food and learn how many carbs are in it. Label your boxes if that helps. One of the most helpful things anyone did for me was when my mom went through our pantry and wrote on our food boxes. For example, she put 5 crackers=15 grams of carbs. She did this for almost everything in my pantry. We don't do it now as we tend to buy the same things and have learned how many crackers or how much cereal equals one carb choice, but in the beginning it made things so much easier. I found carb counting initially very overwhelming, so anything you can do to make it easier helps.
11. Know that if your child is like mine they will be STARVING in the beginning. Jessica was constantly begging for food. When we went back for our follow-up they said "Oh yeah, we forgot to mention that kids are starving when they are first put on insulin." We went through bags and bags of string cheese that first month---come up with some carb free foods that you can give your child when they are starving and have already eaten all their alloted carbs.
12. Know that your child's crying or screaming or begging when you are about to give them a shot is just their way of coping. A good friend told me "aren't you glad she has found a way to cope?" It may be unpleasant, but that is really what your child is doing. They are just coping with the shots they must now endure. And soon she or he will find a more pleasant way to cope.
13. Don't forget your non-diabetic kids. This is scary for them and they may be feeling guilty. A lot of siblings wonder why their sister or brother got diabetes, instead of them. If your child is young, make sure you tell them it is not their fault and it was nothing they did. Young children often feel responsible for things they shouldn't. Try to spend some time touching base with them and seeing how they are doing too.
14. Make sure you arm your child with knowledge. My daughter's first day back she was greeted about questions as to why she got diabetes...did she eat too much candy? There is an excellent book called "Taking Diabetes to School," that we went with our daughter to read to her class her first day back. Depending on how old your child is this is something you should consider.
15. Try to keep doing all the things your family did before. They may have to be modified, but don't let diabetes take what you and your child enjoy away from you. My husband has lived with Type 1 diabetes for over 20 years---he has traveled to desolate parts of the world, gone through medical school and residency and has also become a Family Physician, and never let diabetes stop him. Don't tell your child they can't do something because of diabetes...ask them how they will do it. We love to travel and so we planned a short weekend away soon after my daughter was diagnosed. Proving to ourselves we could successfully still travel all while managing her diabetes was a huge sense of relief. Look at what your family likes to do and make an effort to keep doing it. Diabetes can be intimidating, but don't let it win!
Wednesday, July 14, 2010
Random Thoughts in the Emergency Room
October 7, 2009
As I sat in the ER that night I jotted down my thoughts. Writing has always helped me cope and I just found myself needing an outlet for all of the racing thoughts I had as I sat and tried to process the huge bombshell that had just been dropped.
Despair
Guilt
Such Sadness
Fear
I'm terrified for her future. How will I do? Will I be what she needs? If I fail will she be non-compliant? How will I do this?
My sweet, sweet perfect baby girl.
Fast-forward nine months, and I want anyone with a newly diagnosed child to know that we are fine. Life is not without daily struggles, but Jessica continues to amaze us. She is attending a regular day camp (we and a good friend take turns going at lunch to give her insulin), she is learning how to count carbs, and she has adjusted better than I ever would have imagined that night. Although your world is shattered, have faith that one day, sooner than you think, the pieces will fit back together. They won't be in the same order they were, but your world will once again be filled with happiness and hope.
As I sat in the ER that night I jotted down my thoughts. Writing has always helped me cope and I just found myself needing an outlet for all of the racing thoughts I had as I sat and tried to process the huge bombshell that had just been dropped.
Despair
Guilt
Such Sadness
Fear
I'm terrified for her future. How will I do? Will I be what she needs? If I fail will she be non-compliant? How will I do this?
My sweet, sweet perfect baby girl.
Fast-forward nine months, and I want anyone with a newly diagnosed child to know that we are fine. Life is not without daily struggles, but Jessica continues to amaze us. She is attending a regular day camp (we and a good friend take turns going at lunch to give her insulin), she is learning how to count carbs, and she has adjusted better than I ever would have imagined that night. Although your world is shattered, have faith that one day, sooner than you think, the pieces will fit back together. They won't be in the same order they were, but your world will once again be filled with happiness and hope.
The Beginning
We were traveling down life's road with its many twist and turns. As I spent time packing for our big, much anticipated camping trip I didn't give any thought to the marshmallows, chocolate, and graham crackers for the smores. I threw in hot dog buns, Capri Suns, and ketchup without even glancing at the nutrition label. Little did I know that within a few short hours my world would be spinning with information about carbohydrates.
Looking back could I have had any idea? I have asked myself that over and over, and I didn't see a single sign until that day. Had she lost weight? Maybe a bit...but she was playing soccer. Had she been eating more...well, yes, but maybe she was going through a growth spurt. That day on the way to the campground the writing on the wall was crystal clear.
The night Jess was diagnosed we were on our way to go camping for a long weekend. We had left 45 minutes prior and were headed down the highway. Everything had been great. She was totally herself, had played an entire soccer game 3 days before as we had no subs and was our leading scorer, had gone to a sleepover with one of my friends who is a doc and noticed nothing. It was just regular old normal life and we were so excited for the trip. The girls had helped me buy their first real sleeping bags, the tent was packed...it was a good time.
Jess asked for a drink and we thought nothing of it. Ten minutes later she asked for another. We had just picked them up from school so I figured she hadn't drunk much that day. My husband stopped to pump gas and she asked me for another drink. I told her she had had enough. She begged me for an ice cube..."my mouth is burning." I started to get an uncomfortable sense of dread. Forty-five minutes after we had left home we stopped at a McDonalds as Courtney (our other daughter) had to pee. Jess tried to drink out of the spigot of the bathroom faucet---something her germ-phobic mother has made sure she has never done. I came out of the bathroom, my heart racing, and told my husband we had better check. I thought I was over-reacting but didn't want to get to a campground late at night with unknown cell phone coverage. She begged us not to check. Jessica is my child that screams when you brush her hair. I always joke that she will have fibromyalgia...she just has such a low pain threshold. We held her down screaming and checked. The meter read "critical high" and my entire life shattered. We checked again....surely it must be a mistake...she was just fine...we are going camping...this isn't happening. "Critical High" it read again. Courtney reads our faces and screams "Jessica has diabetes?" Jessica panics "I have diabetes?" I can't think straight. Everything is happening so fast and we are outside at a McDonalds. I think surely the meter must be broken and I check my sugar---96. I am now completely panicked.
In the ER we tell the receptionist our daughter has new onset Type 1 diabetes. She looks at us like we are crazy...who referred you? We did...she looks like we have lost our mind. We get taken back and begin our ER experience. I ask for the child life specialist which thankfully I knew to ask for. We saw two very bad residents...my favorite phrase by the pediatric resident....after she happily skips in and sings "how we doing tonight?" I answer "could be better," to which she replies in front of Jessica..."Awww...does mom need a box of tissues?" Well, let's see...you just told me my child's blood sugar is 684, and I just had to hold her down while she begged and screamed for me not to let them put an IV in her. And, we have just had to give her her first two shots of probably a billion in her lifetime. I'm a doctor so I've admitted the horribly uncontrolled diabetics. I've rounded on them after they've had their legs amputated. I've seen the 20 year old--who decided to just stop taking her insulin while she used cocaine instead--code in front of me and die. I've delivered the news to her absolutely devastated parents that we did all we could, but we couldn't save her. I now see Jessica's face when I think of that night. Yes, Miss Pediatric Resident....I could probably use a box of tissues! Of course, I keep this to myself and tell her I am fine. Luckily, Jess was not in DKA and we were discharged at 1 am to follow up the next morning with the pediatric endocrinologists at 8 am for 8 hours of education.
The first week is black. I have never felt that way before. I've had some minor gray periods in life, but not black. Just when I thought I couldn't take it anymore...I'd have to start an SSRI or something, it lifts. And, Jessica is the reason. She stops screaming and being held down for shots. She comes up with a ridiculous routine instead that involves counting to 30, singing a song, tapping specific fingers before shots...but she stops screaming. She writes a song. She reads a book about diabetes to her class. She does what every child I have ever known does. She adapts to what is happening better than any adult. I begin to realize that while life will never be normal again, it will be a new normal.
And, that was the beginning.
Looking back could I have had any idea? I have asked myself that over and over, and I didn't see a single sign until that day. Had she lost weight? Maybe a bit...but she was playing soccer. Had she been eating more...well, yes, but maybe she was going through a growth spurt. That day on the way to the campground the writing on the wall was crystal clear.
The night Jess was diagnosed we were on our way to go camping for a long weekend. We had left 45 minutes prior and were headed down the highway. Everything had been great. She was totally herself, had played an entire soccer game 3 days before as we had no subs and was our leading scorer, had gone to a sleepover with one of my friends who is a doc and noticed nothing. It was just regular old normal life and we were so excited for the trip. The girls had helped me buy their first real sleeping bags, the tent was packed...it was a good time.
Jess asked for a drink and we thought nothing of it. Ten minutes later she asked for another. We had just picked them up from school so I figured she hadn't drunk much that day. My husband stopped to pump gas and she asked me for another drink. I told her she had had enough. She begged me for an ice cube..."my mouth is burning." I started to get an uncomfortable sense of dread. Forty-five minutes after we had left home we stopped at a McDonalds as Courtney (our other daughter) had to pee. Jess tried to drink out of the spigot of the bathroom faucet---something her germ-phobic mother has made sure she has never done. I came out of the bathroom, my heart racing, and told my husband we had better check. I thought I was over-reacting but didn't want to get to a campground late at night with unknown cell phone coverage. She begged us not to check. Jessica is my child that screams when you brush her hair. I always joke that she will have fibromyalgia...she just has such a low pain threshold. We held her down screaming and checked. The meter read "critical high" and my entire life shattered. We checked again....surely it must be a mistake...she was just fine...we are going camping...this isn't happening. "Critical High" it read again. Courtney reads our faces and screams "Jessica has diabetes?" Jessica panics "I have diabetes?" I can't think straight. Everything is happening so fast and we are outside at a McDonalds. I think surely the meter must be broken and I check my sugar---96. I am now completely panicked.
In the ER we tell the receptionist our daughter has new onset Type 1 diabetes. She looks at us like we are crazy...who referred you? We did...she looks like we have lost our mind. We get taken back and begin our ER experience. I ask for the child life specialist which thankfully I knew to ask for. We saw two very bad residents...my favorite phrase by the pediatric resident....after she happily skips in and sings "how we doing tonight?" I answer "could be better," to which she replies in front of Jessica..."Awww...does mom need a box of tissues?" Well, let's see...you just told me my child's blood sugar is 684, and I just had to hold her down while she begged and screamed for me not to let them put an IV in her. And, we have just had to give her her first two shots of probably a billion in her lifetime. I'm a doctor so I've admitted the horribly uncontrolled diabetics. I've rounded on them after they've had their legs amputated. I've seen the 20 year old--who decided to just stop taking her insulin while she used cocaine instead--code in front of me and die. I've delivered the news to her absolutely devastated parents that we did all we could, but we couldn't save her. I now see Jessica's face when I think of that night. Yes, Miss Pediatric Resident....I could probably use a box of tissues! Of course, I keep this to myself and tell her I am fine. Luckily, Jess was not in DKA and we were discharged at 1 am to follow up the next morning with the pediatric endocrinologists at 8 am for 8 hours of education.
The first week is black. I have never felt that way before. I've had some minor gray periods in life, but not black. Just when I thought I couldn't take it anymore...I'd have to start an SSRI or something, it lifts. And, Jessica is the reason. She stops screaming and being held down for shots. She comes up with a ridiculous routine instead that involves counting to 30, singing a song, tapping specific fingers before shots...but she stops screaming. She writes a song. She reads a book about diabetes to her class. She does what every child I have ever known does. She adapts to what is happening better than any adult. I begin to realize that while life will never be normal again, it will be a new normal.
And, that was the beginning.
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