Melanie-
It is so tough to be strong for everyone while being torn apart on the inside. I know exactly how you feel. And not only do you want to be strong for your child, but it's expected of you simply because of your role as Mom. Uuugh! I have yet to find a venue or someone that allows me to to be weak, even if for only a minute! I started a Type 1 support group in my area and trying to get people together can be very difficult because even though there are so many Type 1s, they are scattered and you have to really route them out. Hang in there and if you ever feel like venting, feel free to email me and do so! You're totally allowed to feel whatever way you want to and still be a great Mom and caregiver.
Rita
Rita,
Thank you for the reply. I came accross this blog spot yesterday during my searches online, and let me tell you, I feel so much better knowing there are other parents out there who feel like I do.
Just as an update, I found out yesterday that there is a support group starting in my area next month. A co-worker has a friend who's daughter was diagnosed 9 days after my daughter was, and Francine is starting a group, but, unfortunatly, the first meeting is on a night I have tickets for myself and Hannah to go see Riverdance (can't wait, I love that show).
Thank you for the invite to email, don't be suprised if you hear from me :o)
Have a WONDERFUL weekend!
I read these stories and get so emotional - you are all so amazing. I had to run something in to our diabetic clinic the other day and I noticed a mom and dad with all the familiar literature, equipment etc. in front of them and the dazed, overwhelmed looks on their faces that I remember so well. The nurse introduced me as a mom of a child with diabetes and asked them if they had any questions for me. They asked a few and then the mom said, Do you ever stop feeling overwhelmed? I just started to cry with her and felt like such a dolt because the nurse was probably thinking I could say yes and offer strength to this mom. But no . . . not always sometimes I'm strong and sometimes I'm still pretty emotional. It's been 2 and a half years since my daughter's dx. My daughter Mackenzie is much stronger than I am.
Her diagnosis was 2 weeks before her 11th birthday. Her and I and another mom and daughter were on a 4 hour road trip to their hockey tournament. She was feeling fine but I noticed over the course of the drive that she was drinking a lot. Her water, my water, a pop, another water - stops to pee at gas stations and one on the side of the road. That night she got up to pee twice in the night which was unusual. The next morning she played hockey and I watched as her energy started out good and then it seemed to drop dramatically - she also waved her water bottle at me because she needed it filled up. I should add here that my husband has type 1 (since he was 13 - we were told our kids had a 2% chance more than any other kids to develop diabetes - I think now that statistic is higher) Anyway, I always have the symptoms in the back of my mind and when she got off the ice and said her legs were really achy I knew. Whenever her dad has a high blood sugar his first symptom is aching legs. I took her to a pharmacy and asked to use their glucometer and it just said HI. At the hospital it said critically high - we live in Canada and measure bg differently, she was 33 but with no ketones.
So we went to the hospital and I checked her in and between sobs told them I thought my daughter had diabetes. Mackenzie cried because she wondered if she could play hockey again - that broke my heart. Two days at this hospital and then they let us drive home to spend another week at our local hospital.
She was diagnosed 3 days before halloween so she pigged out on sugar free candy - and the next day payed the price!! The day after when we were meeting with the dietician for our education piece she taught us about sugar alcohols and how they are hard on little stomachs - we looked at each other and laughed because we learned that one the hard way and a day too late!
I remember wondering if I would ever lose the knot in my stomach, the anxiety. It took awhile but mostly now it's gone. It comes back on occasion but I know we have the tools and knowledge to deal with glitches. I try and remind myself that in the big scheme of things there are families dealing with worse diseases with possibly tragic results and I am thankful for the advancements in research and daily care and like all parents I dream of a cure. My husband was told as a child there would be a cure in his lifetime and he needed to take care of himself to take advantage of that cure - now I hope the same for my daughter too.
PS: She's still playing hockey :)
This is Cara's story:
On February 13th 2009 we realized that diabetes was our new reality. After one month and a half of sickness, a few visits to the doctors office, a course of antibiotics and 4 hours in an E.R. waiting room our 3 year old daughter was diagnosed with type one diabetes.
The first thing people say to me when they find out about Cara and diabetes is how did you know that she had diabetes? The answer that I give is that I did not know. It took about a month and a half to figure out that there was something really wrong. Maybe it was because she would get sick with the flu (so we thought) and then in four days or so she would begin to get better. Just as she was starting to seem better she would get the flu again. Every time that she would get sick a few of our other kids would seem to have the same thing. Cara started taking a little longer to get better and soon she was not getting any better and having very different symptoms then the other children. The weekend before she was diagnosed she formed a yeast infection. Which later I found out it was caused from all the sugar in her urine. I was socked and a little embarrassed, thinking that it was something that I had done, not bathed her well or not made sure she wiped herself properly after going to the bathroom. I'm not sure why mothers always seem to blame themselves. A few days after the yeast infection formed she began peeing A LOT. She was always in the bathroom about 2x's more then normal. So I thought a yest infection + heavy urination = bladder infection. Then soon after she was extremely thirsty, always asking for anything to drink juice, milk, water and Cara never asked for water she would actually complain about having to drink water normally. She also had lost a tremendous amount of weight in a very short period of time and that is what scared us the most, she was 26 lbs and when she was 18 months she was 27 lbs. We made another doctors appointment for Cara. The doctor ordered blood work, like it was no big deal and sent us home. We had lunch and Cara went down for a nap because she was so tired. When she woke up from her nap she vomited for the third time in about two months. I thought to myself there is no way that she has the flu three times in about 2 months. This is when I brought her into the E.R. I was actually scared they were going to think I was crazy for bring my daughter to the emergency room for the flu. I knew that something else was wrong. As I was getting ready to leave for the E.R., my husband said "it my be diabetes". Four hours later the doctor told me the same thing Cara had type one diabetes. Her blood sugar level was 53.2mmol or 957.6 mg/dl when she was admitted to the pediatric floor.
Just a side note: I am Canadian and our blood sugar numbers are measured in mmol's not mg/dl like the USA. So the blood sugar numbers that I give must be X by 18 for example Cara's blood sugar when she was admitted into the hospital was 53.2 mmol which is 957.6 mg/dl
You can read more about Cara and our lives with diabetes at The Ride of Our Lives with Type 1 Diabetes
Nicole, it's so scarey what you had to go through. That's just one of the things (although it's a major one) that I really detest about this disease/condition. It masks itself as so many common, everyday illnesses or the "signs" can usually be attributed to something else so that the majority of us never even think about diabetes.
I'm so glad she was diagnosed in time!
My son was diagnosed in December 2008 at the age of 3. The first sign was wetting the bed which he had never done before. I also noticed him drinking more than usual. My mom was diagnosed with Type 2 about six months prior so I had done some research. It crossed my mind that it might be diabetes, but being a bit of a hypochondriac I dismissed it. The symptoms continued for about 5 days. The whole time I am freaking out. I finally made an appointment with his pediatrician after he woke up one morning and his lips were pealing. Almost like a snake shedding it's skin.
The doctor had tears in his eyes as he told me the diagnoses and explained we would have to be admitted to the hospital. We spent four days learning everything we could about caring for him. I was petrified to go home.
Now, four months later we are all trying to get used to our "new normal".
Hi everyone, I'm new to this site, but not new to type 1 diabetes any longer.. Here is my daughters story:
Unlike several of the stories I have read on here this afternoon, ours is some what different. I didn't have the weeks, months or even days of symptoms from my daughter. Although I noticed she had lost a little weight, she didn't have any of the other symptoms until. January 28th 2008. Three months before her 8th birthday.
We were attending a fund raiser for a friend of ours who had been in a terrible accident. Soda, chips, and down home Texas BBQ was being served on that day. My daughter of course ate a little bit of this and that, just as she would have any other "special" occasion or BBQ.
However, this day was different. She was going to the potty almost every 15 minutes, and drinking soda like there was no tomorrow. That didn't peak my interest, because as mom's, you know if you let your kids drink soda, they'll drink as much as you let them. (One after another) What did catch my eye, was her frequent urination. But even that didn't scream out DIABETIC!!!!!! I just thought, well she's a little girl, and little girls can get bladder infections, so she's probably trying to get one. I'll make an appointment for her next week. No big deal right. Well, after being at the fund raiser for more than 8 hours, we went home (about 30 minutes away) and on our way I had to stop twice so she could use the restroom. I thought yeah, she's got a bladder infection, I'll go to the store and get her some cranberry and apples juice to help with the infection, I thought she had. When we got home, she complained of being tired, again I didn't think anything of it, because of where we had been most of day. I got her situated in my bed,(which is a treat in our house when the kid's are sick) and went to the store after the juice. Here's the part where I'd like to think it was devine intervention. Something just hit me....Diabetes??? Nahhh..No one on either side of our family has EVER been diabetic. But whatever "it" was, just nagged at me big time!! So, when I got back home, I grabbed my old nursing books and began thumbing through them and sure enough I found the symptoms of a juvenile diabetic. Hannah had every one of them. It was then that I noticed, how sleepy she was becoming. Yet still get up, get drinks of water and go potty and then "go back to sleep". I told my oldest son, to "hold down the fort" until we got back. I needed to take her to the ER.
When we got to the ER. I told the triage nurse what Hannah's symptoms had been all day and she was "thinking" the same thing I was initially. (Bladder infection) I asked her if she would please check Hannah's BG, just to make sure it wasn't what I am thinking now it could be. She said well you know if you have an infection in your body, your BG can go up a little. I know that I said, I went to nursing school too...Anyway we went back and forth for a few minutes when, I literally had to get ugly to make her check Hannah's BG. She kept telling me that, if there is no family history, then it was un-necessary. Well, like I said she finally complied. After she took Hannah's BG, she said, well her sugar's a little high. I said well, how high?? She was just going to put the meter away, without showing me.
It was 858!!!!! I was furious at that point. Oh a "little high" huh???? Oh I was SOOOOO mad!!
They took her to the back pretty quickly, but didn't administer insulin!! Her sugar continued to climb and she was going in and out of consciousness!!! There reasoning for not giving her insulin was, well maybe it was just a really bad infection. Ok, at this point I was completely livid and demanded they send her to the children's hospital... in which they did. She was in ICU for more than a week on intravenous insulin and fluids and in a regular room for another 4 days. We were educated with everything we needed in order to go home. In fact they wouldn't release her until we were at least 75% comfortable. The children's hospital was the BEST!! Let me explain something really quick...In nursing school, they don't teach you, that every person is different when it comes to an illness. Your taught to learn and think, in general terms and lord forbid you have emotions. So, no matter how much you learn, or you know, or you think you know about an illness, there is always more to learn/know. I had to learn this the hard way.
Since all of this, her diagnosis has changed...She not only is a type 1 diabetic, but she's a "brittle" type 1. Meaning her BG's change so drastically, that one minute she can be at 85 and just a few minutes later be at 260 or vice versa. She at times as a major resistance to the insulin and at other times her body reacts to it quite well. She has had a VERY tough year with these extremes. She's been hospitalized 8 times with some VERY scary hypo. going into grand mal seizures. Her heart stopped December 5th '08 and my oldest son did CPR and saved her life. (I lost it..I couldn't function, I was so scared)
With all of this...I have learned to follow Hannah's unwavering determination. When I am feeling sorry for her, or feeling sorry for myself. I just look at her, and how well she is handling this whole situation. She is truely a God sent and an example of what to do when you're facing a life long illness. Be like Hannah, smile and take each day as a gift. Live life to the fullest, be humbled and give all the grace to God. That is what I have learned from her.. My little angel Hannah :)
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Peter’s Week
Who, ever gets up in the morning thinking their life will be forever altered at the finish of it. I didn’t, my son didn’t. Still, I did wake up with a nagging feeling that something just wasn’t right.
It was a normal day, like always the kids and I got up, had breakfast and set out on our morning walk with the girls. Peter likes to take walks in the morning with “the girls”. They have kids slightly younger than he and peter enjoys seeing them. Andy was his normal happy self, going with the flow.
Peter is a little lethargic, I think he is sick. We have to cut our walk short today for the doctor’s appointment that I have scheduled for him. Yes, it is one of those times. I don’t know what is wrong with him. No, he doesn’t have a fever. No, he’s not throwing up. Why did I come in? He is acting funny. I will get them, “look and the talk”, for over reacting mothers, who bring in their children after one cough. I don’t care. Something just doesn’t feel right.
Our walk goes fine and it’s time to leave. I take the kids back to the car. I strap the kids in the car. It won’t start. There must have been a light left on or something. Eerily the first thing I think is, “if I don’t make this appointment, I’m taking him to the emergency room.” They will really love me there! There is no one around that can jump the car. I unpacked the kids and packed them back into the stroller. I start running. I know about where my friends should be. I catch up to them.
We hike it back to my car and thankfully we are able to make it start. Thank you God! (Blowing him kisses) The perfect person I am. I can still make the appointment. When you have children, always plan to be there a half hour ahead of time. Most of the time, you won’t be late.
The normal nurse questions while we weigh him check the temperature and blood pressure. No fever, throwing up…no, stopped eating …no, rash…no, seem in pain…no, why did you come in? He is acting funny. He seems to be breathing faster even when he sleeps. He is lethargic and fussy. That’s it? Yes. Have a seat; the doctor will be right with you.
Peter’s doctor comes in. He is always cheerful and a good listener. Peter likes him and lets him have a thorough exam. Today is not as tolerant but everything goes fine. He finds that Peter’s ear a little pink. Ear infection he says. Has he been rubbing or pulling at it? No. What about the fast breathing? It’s probably his way of dealing with the pain. I got a prescription for an antibiotic and some numbing drops. We waited for, Peter, Andy and I, for an hour and twenty minutes for the medicine. Finally we get in the car to go home. I gave peter his medicine before leaving.
On the way home Peter started to fuss and then gag. I pull over, worried. There is nothing I can do. He calms down after a minute. I keep driving home. We pick up Jake a little while after getting home. It time for Peter to have a nap. As time has gone by, he has been increasingly fussy. We decide it is just too much. We worry that Peter may be having an allergic reaction to the medicine that he had been prescribed. Jake and I loaded both kids in the car to go back to the hospital.
Peter’s breathing has become labored. He is even more lethargic than before. Peter is not paying any attention to what is going on around him. (It’s here the numbing action kicks in. A part of your brain kicks in, that suppresses emotions, so that they don’t interrupt and can deal with the situation appropriately.) It’s really quite tiring.
I carry Peter into the office. I told them I was just here (It was the same people) and I think he is having an allergic reaction to the antibiotic. A nurse yells, “he’s having trouble breathing”, and all hell breaks loose. People start attaching wires while I am holding him. We are being shepherded to a room with a ridiculous amount of medical junk in it.
They take him from me.
More wires are stuck to him. I count three doctors. An IV is put into his right arm. He is crying, scared, confused and trying to reach for me. All I can do is stroke his hair and wipe the tears from his face. Nurses and doctors are using their own language to communicate. By now, blood has been drawn three times in two different ways. The doctor is sweating. He looks nervous. The other one is poking at a machine. I don’t know what the last one is doing in the hallway. An Iv is put in his left arm now. They strap boards to his arms, from his upper arm to his hand. Peter is still struggling to breath. He has turned white and is not crying as much. He is weakly repeating, “Momma, Momma”, over and over again. He doesn’t talk a lot yet. “I’m here, Mommy is here”, is all I can say.
More nurses bring in a X-ray machine. They ask me to leave. I step into the hallway. Jake is playing with Andy. The third doctor looks at me and asks, “Why are you so calm?” (What are do you say to something like that?) I shrug.
I go back in. The doctor says. “We are moving him to the ER. The equipment we need is there. You’ll have to run along with us.” I run and tell Jake we are moving. He starts to pack up Andy. I run with the entourage to the ER with Peter. After we had been there for about 2 minutes, a nurse hands a phone to the doctor. (Apparently, it’s the lab.) He talks for a minute, hangs up and comes to me. He said that “peter is very sick”, He is in a state we call DKA. Peter is diabetic. This has probably been coming on for a while.
Deep breath.
Jake walks into the ER. I walk up to him, choke, and say Peter is diabetic.
So, Peter has diabetes. Well, at least they know what’s wrong, at least I didn’t let him drink cleaner or something. Nope, I don’t feel any better. The doctor steps back and says he is moving peter to Sacred Heart Children’s Hospital ICU. They are better equipped to take care of him there.
Jake takes Andy home to our amazing neighbor Jen. He also collects supplies to spend the night at the hospital. Peter and I are put into an ambulance to Sacred Heart. The sirens are not as loud inside the ambulance as I expected them to be. Peter has fallen half asleep out of exhaustion. It looks like he’s passed out. The paramedic or EMT, I don’t know, pulls out a small bear. He asks me to give it to Peter when he wakes up.
We finally get there. Somehow the trip through the hospital seems longer than the ride there. We are rolled in to ICU and the nurses swarm, again. Peter is moved to another bed in a room with all too many machines. To my dismay, the nurse does not like the IV that is already in his arms. She pulls it out and replaces IVs in both arms. She better secures his arms to new boards. His arms are now flippers. Yes, there was screaming through all of it. In come more nurses. All of the tests that were done at the navy hospital are now redone at the new hospital. I am starting to view the nurses as vampires.
The doctor comes in quickly. My amazing friend Deb has arrived. The doctor says,” Peter is very sick.” Thank you for that illumination. He speaks in something surprising like English for a doctor and I am very surprised that I understand most of it. To simplify it to a pee, he is diabetic and dehydrated to the effect that if we hydrate him too quickly it will kill him. At this point I’m not sure how long I’ve been holding my breath.
Jake arrives at the end of the language lessons. It is all quickly gone through again.
It is another 24hrs before the doctor said that peter would be all right. We spent most of our time at the hospital with peter the next four days. It was filled with comforting peter as much as we could. We spent endless hours trying to learn about diabetes and how to take care of Peter. Culture shock to the extreme. Give him shots? Poke his figure eight times a day? He is just a baby; we can’t do that to him!
My most vivid memories of those few days are when peter would ball in complete despair and try to reach his arms out to me… he couldn’t bend his arms to give me a hug because they were to boards with needles coming out. Whenever a nurse or doctor walked in the room peter would burst into tears because he thought they were coming to hurt him. In his mind he was right.
I was so surprised when he started to feel better. He enjoyed toys and walks and the little things again. Any adult would stew or get depressed but not my boy. If you want to see strength, look at a child diabetic.
Now, Peter just turned 4years old. He is as happy as ever.
I didn't know this topic was here. My son's story is on my bio. He was diagnosed when he was 12 months old.
Sarah-
So well told.
Our children are amazing, aren't they? The role of a mother to stand strong for their child supercedes any other role we serve. I am a Nurse Practitioner. I too remember standing so strong and calm. And even though I spoke the language, I tuned them out, my intellectual mind shut off and all that I could process was my daughter's developing fear of death and those big blue eyes watching me for any sign of weakness to confirm that fear, the tubes, wires, and obnoxious sounds surrounding such a beautiful healthy child.
Yes, our children are amazing. As are my other children in supporting and caring for their sister as well. I volunteer as Medstaff for weekend and summer camps for diabetic children and it is the most rewarding experience in the world. I was looking over the mass of children one day trying to figure out why they were all so wonderful and I concluded that each one was loved and cared for so much, that love simply eminated from them. So you just pat yourself on the back too!
Thanks for your response. It's weird to bounce back from angry to sad to happy and confident all on one subject so constantly. You actually mentioned a subject I have been wondering about. I wanted to find a summer camp that I would feel comfortable with Peter going to. I don't mind traveling for a good camp. You mentioned you volunteer at one. Peter is a little young but I have heard about weekend camps for families with young children. Have you heard of that? Sarah
All these stories just blow me away, and Diana yours brought tears to my eyes.
Here is our diagnosis story.
My daugher MacKenzie was always a "solid" girl...not fat, but not rail thin like her big sister. This summer she really got skinny. I commented to several friends that Mac just looked thin, and even once used the word gaunt. But she was never sick; never out of character, just thin. As fall rolled around, I did notice that during her sister's volleyball games, Mac wanted to go get a drink of water a lot...but I thought it was her escape to get out of the gym and run around (Mac had just turned 9 at the time). One night we had a BAD windstorm. The electricity kept going in and out. Everytime the electricity would flash, it would wake me and I would hear Mac up, going to the bathroom. This from the kid who ALWAYS slept through the night. And everytime I heard her, a voice in my head said "This kid has diabetes. Get her to the doctor". Now--there is NO diabetes anywhere in my family and I am (or rather WAS) really dumb and uninformed about the whole thing..but that voice was in my head...Mac has diabetes; go to the doctor. I know that God was speaking to me that night.
I went to work the next day and talked to my dept chair, who has had type 1 for over 20 years. She just shook her head, laughed ruefully as I described what I saw in my girl, and said 'You just described my life at diagnosis". Long story short, we went to the dr. that day and Mac was at 573--diagnosed Type 1 Diabetic. She spent 3 days in the hospital and was back at school immediately afterward. She has given herself her own shots from day 1 and has been a real trooper...much better than me. The only thing that is a mixed blessing is that she was never really sick...in her mind, she got up, went to school, mom said let's have a check up, and all of a sudden she's in the hospital. Therefore, I'm not sure she totally "gets" how serious this could be. Hope that doesnt' bite us in the future.
It's been 5 months and I have days of thinking "We can do this" and days of thinking "Oh dear God, what now?". It is still overwhelming, still scary, still a learning experience (You experienced moms...how long until I stop feeling like I should be able to FIX this???) But....I still feel blessed when I think of her diagnosis...it truly was divine intervention.
Our kids are all special...bless all you moms and dads out there dealing with this scary, scary thing!
Kim
Kim, I know how you feel. We all wish we could fix it. I often feel like I'm fighting with it. But honestly, the best any of us can do is work with it. I hope that makes some sort of since for you.
Sarah I wanted to find a summer camp that I would feel comfortable with Peter going to.
I wanted to find a summer camp that I would feel comfortable with Peter going to.
Hi, Sarah,
We're in GA, and we attended a family diabetes camp here last fall (called Camp Kudzu). It was really great for William (8) to be able to go off with a group of kids and facilitators, knowing that everyone at the camp was trained to take care of him if necessary. The days were packed full of great activities, he and his brothers all had a great time, and David and I didn't have to worry about him. There is also a week-long summer camp for just the kids, and they have teen camps, too. You may want to check the JDRF website, or with your endocrinologists office, to see if they have a list of diabetes camps in your area. It was definitely worthwhile for us.
Blessings,
Mo
There are family weekend camps that are wonderful and are great options for little children. For children over 8 there are week long summer and weekend high adventure camps. I got started volunteering by doing the weekend camp, then volunteered for the week long summer camp.
The children at camp are soooo well cared for. At Camp Possibilities http://www.camppossibilities.org/template/home.asp?form_camp_id=9063 we have Medstaff, counselors, counselors in training and Recreational Staff. Volunteer nutritionists/dietitians coordinate with the camp cafeteria. The Medstaff is comprised of Endocrinologists, Nurse Practitioners, Certified Diabetes Educators, Pump specialists, Nurses, and professional students. Counselors are well trained and live in the cabin with a group of campers. Also in the cabin are Counselors in training, 17 year old campers who are given responsibilities so that they can be groomed into counselor positions. With all of these volunteers, the children are able to participate in all camp activities safely. The kids have a blast! Initially, volunteering for the camp was for a bit selfish reasons. I was worried about sending my daughter off for a week alone. And though I saw little of her that week, just knowing that I was in proximity of her was relieving. However, now that I understand the camp and how safe my daughter is, and how easy it was for her to be away, I would send her even if I weren't volunteering. But, too late.... I'm hooked. I loved volunteering too much.
The High Adventure Camp that I volunteer for is in North East, MD on the Chesapeake Bay. http://www.adventuresforthecure.com/extremeWeekend.html Kids participate in the Rockwall, Kayaks/Canoes, Giant Swing, Zip Line, High RopesCourse, Low Ropes Course, Disc Golf, Hiking, Game Room, Beach Volleyball, and Sports Field. There is a bit less "roughing it" at this camp (my room actually has air conditioning). LOL
If you have any specific questions, I'm happy to answer them!