There really is no in between. No, I’m not talking about diabetes per se, yes, you either get it as in get diagnosed or you don’t get it and you are not diagnosed, but I mean people either get this disease or they don’t. Most people, even the ones we need to get it, caregivers of our children, endocrinologists, pediatricians, usually don’t get it. They may be knowledgeable about the facts: how to treat highs, how to treat lows, insulin for carbs, but knowledge is a far cry from feeling. I can know a lot of things about a lot of things, but I don’t truly know until I am in them, and they are in me.
Type 1 diabetes is blood glucose, yes. Type 1 diabetes is insulin, yes. Type 1 diabetes is carb counting, yes.
But…
Type 1 diabetes is also pain, yes. Type 1 diabetes is also fear, yes. Type 1 diabetes is also unrelenting, yes. Type 1 diabetes is also exhausting, yes. Yes. Yes. Yes.
As a mom of a son with Type 1 diabetes, I truly get it. I feel the pain that my son feels when he has to check his sugar over 10 times a day. I feel his little fingers as they get calloused and rough at the tender age of 7 because he has to check his sugar to stay alive. I feel my son’s pain when he winces instead of screams because he is so freaking brave when we have to change his insulin pump every 3 days. The pain is there, it does not go away. It can’t, pain and diabetes go hand in hand.
I feel the fear. I feel the fear that my son will not be alive when I check on him in the morning. That’s a fear that cannot be explained or understood unless you live it every day. No mother should wonder if her son will be alive in the morning. I feel the fear when my son is outside playing and I see him hanging upside from the slide as if he has passed out, only to scream, “WHAT ARE YOU DOING!?!?” Just to have said son answer quite simply…”Nothing”. He knows the fear too. He knows he cannot leave the house with fast acting sugar and his meter. He knows it is dangerous for him to be far from another person. He is 7!
I feel the fear of a blood glucose reading of 45. It’s as if a chainsaw murderer is chasing me to my front door and I only have seconds to get the key in the lock so I can be safe inside. When I see a 45 I feel as if I only have seconds to grab that fast acting sugar to ward off a low blood sugar seizure. Who am I to test the fate of a reading of 45?
I feel the unrelenting power of diabetes. There are no sick days, time off, vacation days, holidays, mental health days when dealing with Type 1 diabetes. You are on and working 24 hours a day 7 days week. There is a joke that you can rest when you are dead, well, that’s about right for caring for diabetes. You can stop caring for diabetes when you are dead. Or if you turn it, you can stop caring for your diabetes and you will be dead. Either way, you’re off the hook, but until then, you keep on keeping on. My son is well aware too, birthday parties, water parks, the beach, the pool, Great Adventure, diabetes is there. Uninvited. Unwelcome. Yet, always there.
Exhausting. No, not the “I worked all day on my feet” exhausted. But more like the “I haven’t slept more than 2 hours in row for 3 days because I have to check my son’s sugar every 2 hours” exhausted. That’s an exhausted that many people will never have to know. Exhausting to my son, who is the recipient of all those blood checks. Who would want someone to come into their safe space, their bedroom, and stick a needle in their finger to draw out a tiny droplet of blood? Not I. My son wakes up sometimes more tired than when he went to bed and he has no idea why. He doesn’t wake up with those checks, but I know he knows I’m there. He sticks his tiny finger out when he hears the glucose meter beep. If that doesn’t break your heart…
I get it, I do, and I love the people that get it with me…you know who you are.
Thank you. I sit here waiting for the next glucose check reading your blog instead of sleeping. I am so tired I am certain I will sleep through my alarm so no sense in trying to sleep – the price of failure is too high. Unless you live with T1D you really have no idea what living with it is like.
Most people think it’s a few shots and you have to watch what you eat but it is so much more than that. The fear, the exhaustion, the constant balancing act of coping and being overwhelmed ALL DAY AND NIGHT, EVERYDAY. As a mother of a T1D son, I watch as he is so exhausted from constant disturbances in his sleep because of fingersticks, insulin shots or site changes, having to get up to check his ketones and he does it without complaint because the alternative is to not do those things and risk his life.
I get so tired of those people that have the attitude “is it really that bad?”
Yes it is for every T1D child and the parents that care for them and only we know, only we get. Thank you for getting it.
Liz,
I’m so glad you found this on facebook. It’s the whole reason I joined in the first place, to share my blog. People try, but it’s just not possible to understand what we and our kids go through. I am glad you have your husband’s support, that means the world.
Thanks for reading and writing.
Leslie
Hi Leslie I just ran across this on facebook and it felt like you weretaking the words right out of my head and not only my thoughts but my little boy is also 7 and is on a pump…no one will ever understand unless you walk in their shoes….I am very fortunate in the fact that my husband also has the same fears for our son so I have that bestfriend to walk s long beside me. thanks for sharing your words with us <3
Thank you so much for reading. I am sorry you are going through another life altering diagnosis. Autism, as well as diabetes, is sometimes just too much. Hugs to you during this trying time.
Leslie
Thank you so much for this blog. I definitely get it!!! The fear of sleeping through my alarm!!
I am extremely grateful that my daughter was 10 when she developed type 1 diabetes
As at least she was more able to understand. At the moment though I am now having my
Four year old hyperactive son being diagnosed with autism. So triple exhaustion on it’s way
And no rest in sight for a long time. I can’t say to him ‘let mummy sleep a but longer cos I was
Up all night’. He is still being his hyperactive self first thing in the morning!! Thank you so much
For this blog, it truly makes us feel we are not alone. <3
Oh Dana, I am so glad you found my blog. I do get it and so many of my friends at http://www.type1parents.org get it too. I know how it feels to feel so alone. We are over 4 years into this and I feel like I do every single thing by myself. Yes, my husband will help out every once and a while but it is not the same. I crunch, I make changes, I stay awake. I do get it Dana. Hugs to you and your little one.
Leslie
Nobody gets it. You do. Thank you! I feel so alone! My baby was diagnosed in September. On Labor Day. He was 15 months old. And already it has all become routine. But even my husband doesn’t lay awake worried that our little guy is okay. He doesn’t do the middle of the night checks (trust me, its better this way). He doesn’t know why I freak out when I don’t wake up to my alarm. And no one understands why I worry when he is so asleep that he doesn’t stir when I first pick him up or try to wake him up. My in-laws don’t seem to even want to know how to take care of him and yet they want to care for him for a long period of time. How can I trust him with them if they can’t even handle doing his sugars and shots in a short period while we are visiting? Instead of dealing with our day to day reality they are posting things and talking about cures. Cures are wonderful and I really really hope that they find one. Soon. But I have to deal with a minute by minute reality of sugar checks, highs, lows, ketones, shots, and a upset baby. I have to count the carbs on everything that he eats. I have record those carbs, sugars, shots and report them to the doctors. I have to play with the math and hope that we are getting it all correct so that my little one doesn’t have the extremes. Not them. Not my husband. I do it. Its a lot of responsibility and causes a lot of fear. So when I say I am exhausted, that I need a break, and that I hate this disease, I can’t stand it when a parent of non-diabetics try to tell me that they understand. They don’t understand. They don’t feel the same bone numbing exhaustion and worry that I do. And yes, they may worry about their child, as all parents do, but they are not faced with the serious possibility that their child could go into a coma or have a seizure and never come back from it because their sugar was off. If that were to happen I would forever blame myself as I would think it was because I was not “controlling” the disease well enough.
Thank you for “getting” it.
Thank you all so much for reading. Jesicalyn, I am so very sorry for your loss. You are never alone. Please visit here often. I find just knowing people are out there like me makes a world of difference. Hugs.
Leslie
It is hard even for the children of diabetics as well. I had to watch my mother with her diabetes. Blood sugars, carb counts, and seizures. About 4 years ago she took a turn for the worse. Her kidneys were shutting down. Then not only did I have to help check her blood sugar, I had to help her do dialisis. Dialisis and insulin kept her alive for 3 years. I lost my mother May 11, 2010. Diabetes is a silent killer. It will take the ones you love in a heartbeat. All you can do is pray for a better future for those that still have it, and also pray that a cure will come soon. Noone should have to watch anyone suffer with diabetes. Whether it be your parents, children, grandparents, aunts, uncles, cousin, or friend. Thank you so much for your blog. Its nice to know that others share the same pain and suffering that we have to live with every day for this horendous deseise, and that I am not alone.
Thank you for your blog. It helps me know I’m not the only one with these feelings! My son was diagnosed 13moths ago at the age of 6. We live in England but obviously type 1 is universal.
Mamabear, my in-laws are exactly the same, so frustrating.
Thanks Lynda
My 11year old son was diagnosed in February, my sister was diagnosed at 12 and I thought I got it! Not until your child has this disease will you get it! Thank you for your words, they are everything I feel!! I have sent this to everyone who needs to understand!
Thanks again!!!
What a wonderful thing that you are doing with this blog. My son is 28 years old now. He was diagnosed at age 7. I got it, but my husband never did. He thought that it was no big deal, and thought that I was weird because I went to support groups. I have prayed daily for a cure, and I was always sad that he never could take a break from this unrelenting disease.
His grandparents didn’t get it. They put out bowls of candy at their house when they had parties. All of the grandchildren wallowed in the sugar, and my son didn’t. He told me that he was sad “because Grandma and Grandpa didn’t care that he had Diabetes”. I was furious with them, and I told them that it was thoughtless and cruel.
Children’s Hospital was a wonderful resource for us. We were fortunate to have Dr. Glasgow who always told my son the truth, and came up with creative ways to make holidays easier. My son would go trick or treating on Halloween, and then we would buy his candy at 10cents a piece. My daughter, who does not have Diabetes, thought that this was a great deal, so she sold most of her candy too!
College was the hardest. I was terrified that my son would die because of partying or not getting help in time when he had a low blood sugar. Fortunately, he had great roomates, and he finished college in good health.
He got married this year, so I am breathing a little bit easier. His wife shares the responsiblity with him, and he has never been happier.
Well said Leslie! Hopefully spreading the word can bring more awareness! Ignorance is awful!
love it leslie!!
Man oh man!! well said, i just saw this today. Love it Leslie!
Thank you all so much for reading and responding. It means the world to me.
Leslie
Wow – Fantastic description of the emotional end of this disease; I have a grandson that was diagnosed at 4 – just turned 7 – and every word you just wrote hits home; thank you for articulating for the world the parts of the disease that the families and especially Moms deal with…..blessings to you and your son.
Thanks for writing this sometimes I feel sooooo alone. The exhaustion is truly unrelenting. My husban wonders why I don’t sleep. My heart hurts every day. I just wish we could run away from it if dor only a day.
<3 to you, too, and thanks.
fantastic
My daughter has a 3 year old son with Type 1, thank you for helping me “get it” a little better. my grandson is my joy and when I really get it is when nana and papa babysit for a few days to give her a little break, I know she’s a phone call away. I try not to call because she needs a good night sleep at least every few months. God bless the Mom’s and the Dad’s, most of all God Bless these little children who live with diabetes.
PS – if you are on FB, please send me a friend request. Debra Alexander-Clarke. Thank you!!!
I am printing this out and sending it to all my relatives that ‘don’t get it’. Bless you, this read was awesome. My daughter is 8 diagnosed at 10 months old. I wrote an article – now almost a book – and the name I had for it is ‘Beyond Exhaustion’. I do get it . . . Hugs to you and your son!
Love you too Leslie.
I get it. Hugs.
What a perfect post, I get it. I would love a D break instead of a March break anytime.
yes to the exhaustion, the fear, and the unrelenting-ness! i wish this stupid disease would just give my son a break every now and then 🙁
<3 So well said Les.
<3 Patty. <3.
and we love you too