I don’t talk about a lot of personal things on this blog. It’s mostly about my home and business and you learn about me along the way. I sometimes talk about clothes, food, fitness and things that may be on my mind, but this isn’t a blog about keeping you updated on all the details about my family. When my five year old son was diagnosed in January with type one diabetes, I wasn’t sure if I wanted to share it on my blog. My initial thought was to not share it. But it was a lot and I needed support and encouragement. I get a lot of that from my blog readers, many who have followed me for over four years and have cheered me on. So, I took a deep breath and, in the wee hours, in a plastic hospital room chair, with tears in my eyes, I poured my heart out about my son who was asleep in the bed just a few feet away from me.
And your response was amazing. It was exactly what I needed…encouragement, permission to grieve and inspiration from those living with T1D. Even at Lucketts, amid the ironstone shopping frenzy, people stopped to ask how my son was doing and how I was doing.
So, this is an update.
My son has been so accepting of his diabetes, which has made everything so much easier. When I learned about the injections, I was imagining a daily battle that would involve sitting on top of my little boy as he screamed. It was nothing like that at all. We needed to hug each other through it the first few days, literally embracing during each shot, but after a few days he didn’t need that anymore. Now the finger pricks and syringes are just a part of everyday…just like brushing teeth and going potty and putting your shoes in the cubby.
He has started drawing pictures of himself getting insulin and testing his sugar. (Notice the smile he drew on his face with a needle is in his arm!) He has started to change the band color on his medic alert bracelet, so it’s a reflection of personal style, not just something mom is making him wear. He’s been taking ownership of putting snacks together that reach his carbs goals and he’s starting to understand his body and when his sugar feels low. He constantly amazes me.
We’ve slowly been plowing our way through the health care system. Between insurance companies and state health programs for those with T1D and everything else that’s involved, it is not an easy task trying to get it all figured out. We’re getting settled into a routine, though, and carrying the supplies around is habit…just like grabbing my purse on the way out the door.
When we first sent Calvin back to school, I was scared and I’m sure I scared the teachers as I threw out the worst case scenarios and kept stressing the importance of everything. Now, when we sent him off to day camp, I let them know what to keep an eye out for and I typed up some information, but I assured them it wasn’t a big deal. And, even as a five year old, he knows a lot of what he needs to do to take care of himself.
Of course, there are days when testing the blood sugar is a disruption from playing Legos or sleeping in and he has a fit like a normal five year old. There are times when he feels special and brave and other times when he feels “different.” There are bad days with extreme blood sugar swings that freak us out and affect his behavior. But, that’s how life is anyway…ups and downs, good times mixed with challenges.
We have been getting involved in our local chapter of the JDRF to get support and so that we can support the efforts to find a cure. We attended a Hershey Senator’s baseball game and JDRF picnic, which was so much fun.
Most people are familiar with type 2 diabetes, since most people with diabetes have type 2. Less than 10% of diabetics have type 1 and only 15% of those with T1D are children. T1D cannot be prevented and it cannot be reversed. Right now there isn’t a cure, only 24/7 management. But so many advances have been made over the last few years and more are just within reach. I get tears in my eyes when I read about the bionic pancreas. We have hope that a cure can be found in our son’s lifetime, so we’re joining the effort.
On September 28, 2014, in Hershey, PA, we’re doing our first JDRF Walk to Cure Diabetes. If you’d like to help, you can do a few things. You can donate to our team, you can join us and walk with our team and/or you can pray and virtually cheer for us as we walk. Click HERE to donate to or join our team, The Calvinators. You don’t have to click anything to pray and cheer us on.
If you’re a business and would like to sponsor our team, I would love to partner with you. I’ve never done anything like this before, so send me an e-mail with your ideas and we’ll figure it out!
So, that’s where we are at the six month mark.
Sending you love and prayers from Southern Oregon. I, too, have Type 1 diabetes…wasn’t diagnosed until my late 30s. I have a lot of autoimmune diseases and diabetes is one of them. It’s a struggle, at times, to deal with this 24/7 disease but what else can one do? Tell Mr. Calvin to keep up the good work! It’s amazing to see what our children are capable of! I saw that in my son, Michael, who fought leukemia for almost 6 years. We do not give our kids enough credit for the wisdom, control and tenacity that shines through when they are presented with one of many of life’s challenges!
I have loved everything about your blog since I discovered it. We have so much in common. Now I found out we share something else. My daughter was diagnosed with T1D when she was 10. I too expected lots of drama daily due to her fear of shots and her drama prone nature. It hasn’t been like that at all. She took charge as soon as she understood the rules. I am not saying it gets easier but it does get better. I can tell you now that if you thought you had a close relationship with God you are in for a much more intimate relationship with him going forward. I have learned the true meaning of “pray without ceasing”. I will add you and your family to my prayers. Thank you for sharing your life with me. Susan
This blessed my heart. I love to paint and I am a huge fan, but my first job is a being a school nurse in an elementary school. I get to first hand take this journey with these amazing kids and their families. It is such a privilege to watch these kids conquer their fears, make huge choices, and all the while just be an amazing kid. I know there are definite challenges, fears, and sometimes it is down right hard, but it awesome to see how families like yours reach out and connect. Thank you so much for sharing your story 🙂
Love your blog. As the mom of a 19-year-old Type 1 diagnosed at age 8, know that it won’t be long until you can’t believe how routine the whole thing is. We’ve made it through sleepovers, camp and even this past year him going to spring break for a week with his buddies. He has been able to do anything he wants, just with a little more planning. When he was diagnosed, I heard that Type 1 diabetics are easier teenagers… perhaps because of the close relationship we maintain with them to manage their health. I found this to be true. I think Type 1 has made my son a little more mature than his peers, but he hasn’t missed out on a minute of the fun of being a kid or a teenager. Best wishes to you both!
I’m a T1D mama, too, of an amazing 8-year old son. Some days are just plain hard, really hard. And others are the most inspiring I could imagine. Knowing we’re not alone, we’re in it together is the greatest blessing. I thank God every day that, if He had to chose our family He chose the right child. Even at his young age, he gets it.
There are also service dogs that detect low blood sugar in diabetics. I figured since your son seems to be so independent and responsible, a service dog would be a great addition, and he’d serve a great responsibility. Just a thought! Diabetes runs in my family and
I follow your blog because , of course, I paint & love shabby chic furniture. I, too, have a son that has type 1 diabetes, he was diagnosed when he wad 9, that was 18 years ago. I wanted to let you know that we kept our daily lives on a normal track. Yes, we planned meal times, the foods that we ate, always had snacks with us, and his “kit”. But what I want to emphasize is that he did go on sleepovers, birthday parties , played league baseball & basketball, started running when he was 11 years old, and joined track & cross country from 7th grade all the way through college. During his college days he would run up to 70 miles a week., and he ran the Chicago marathon as an elite runner. We did have our ups and downs of blood sugars but we were able to detect if he was running low and would handle it. We always made sure that his teachers, school nurses, friends, parents of friends, relatives, college roommates, coaches, etc knew that he had diabetes and what to do if he ever went low. Everyone was & is always so helpful and understanding. I hope this helps somewhat to see your sons future in a positive way, I always needed that boost to see how people have dealt positively with their diabetes.
Hi Marian! I am also a T1D adult onset. Yay for Calvin for realizing he has to take care of himself. I was wondering if your doctor has discussed the insulin pump with you? I have had one for about 7 years. It disperses small amounts of insulin just like your pancreas, and you control the amount of insulin at mealtime based on the amount of carbs you consume. It is amazing how much more your blood sugars stay close to normal versus taking injections. You still check your blood sugar (I check mine 6-8 times per day) but it eliminates the numerous shots you take everyday.
I have the Omni Pod, which is a remote unit, it does not have the tubing you have to worry about hiding. I am also in the process of getting a Dexcom, which alerts you if your blood sugar is starting to go low or high. That way you can treat it before it goes too low or high. This definitely helps as you get older from having complications if you can KEEP it at a normal range, which is very difficult to do. I don’t have any experience with it yet, but will soon have this set up also. I wish Calvin continued success with treating his diabetes.
Thank you so much for sharing your story! I too am a Type 1 diabetic. I am so impressed at how well your son is handling everything!! Kids amaze me!
I wanted to share one thing that I have found to be so very helpful. I have a Dexcom continuous glucose monitor. I gives you a reading as to what your blood sugar is currently and predicts where it is going. It alarms if it is rising rapidly, or falling and has alarms when it is high or low. You can set the limits. It allows you to treat before it has bottomed out, etc. The Dexcom has given my husband a sense of security during sleep, he knows that the alarm will go off before I get too low. The other good thing is that it helps you learn what specific foods do to your levels, pizza is the worst for me.
I wish you and your family all the best!!
Gretchen
The beginning is challenging, that’s for sure, but it gets easier! My son, now nineteen was diagnosed at five as well. I would say the BIGGEST help for us as a family was learning to eat well. That will differ from family to family but for us it means eating no pre-prepared foods from a box, can, or freezer bag. Exercise is a huge weapon against blood sugars and my son played soccer and ice hockey. He will be a junior in college soon at a school about five hours away. It is important, as your little guy gets older, that he learn to take charge of his condition and not let it take charge of him. Definitely get educated about the glycemic scale. Take the days in stride and don’t be overwhelmed if a good intentioned person tells you a diabetes horror story about one of their family members. Thank God for the blessing of each day and focus on being positive and He will get you through! When your son gets an insulin pump you will all love it! No more needles!!! 🙂
Dear Marian,
I have a friend who was diagnosed with type 1 diabetes in her 30’s and is still doing okay after 30 years. She has recently gotten a pump which has given her better today’s and better tomorrow’s along with a positive attitude. Another note of interest is that a local child going into kindergarten also has the disease and just recently received a guide dog who was trained in diabetes and will be attending school with her. Thank goodness for medical advances like theirs and for others as you continue your fight and your support for further studies, etc. wishing you well…NaNcy
Marian, Thank you for sharing. My uncle came down with diabetes 2 shortly after he got married in 1939. He lived to be over 80 years old and also had TB. Then his two daughters came down with type I when they were under five years age. Eileen lived to be 78 years old. We often talked
about childhood diabetes. She said that today it is so much easier for children because children learn to take responsibility for their needs very early on thus more self-esteame. She said she was not allowed
to give herself a shot till she left home. Thus she said she always felt inadequate. She was absolutely amazed about the advancement of treatment etc. in her lifetime. She refused the pump because she so set in her ways. Maybe in the not so distant future there will be a cure
or an alternative to the present day methods. Best of luck to you and your family. Remember every family has something to deal with and best to do one day at a time. Mary
I love your blog no matter what you choose to speak about. Thank you for sharing this personal side of you and your family. I think you are doing a great service to your “viewers” by choosing to speak about it. I’m learning a ton about diabetes just in the few things you’ve shared with us. I have T1 (dad’s side) and T2 (mom’s side) running in my family so I take every chance I get to educate myself. So thank you.
>>>making sure you have an IEP for your son in school… due to the medical issues… If there isn’t an IEP (Individual Education Plan) – is there something attached to his “written records”…. this is a must for the state of PA…. have you been to any administrative meetings to request a review and get this all in writing for him so that you can ensure that he is always safe… Please …. If you need any help with the advocating part – I can point you in the direction of a free advocate closer to where you live (I am too far away to go to his IEP meeting) – never never go alone! (just you and your husband) – always bring someone with you who knows the ins and outs of advocacy within the school system …. if he needs daily visits to the nurses office – it all needs added – how it is going to happen, when it is going to happen, if there is a fire drill, what is plan b, what is plan c if he is on a field trip, etc etc…. if it isn’t written they will not be held accountable….
I can empathize with your fears and challenges and also with your routines, successes and delight in your sons acceptance and bravery. My husband has had T1D for 27 years (diagnosed with leukemia and diabetes at the same time at age 15). One thing I was wondering about while reading your blog is if you have thought about using an insulin pump. I know other children that wear one. My husband’s blood sugars were so out of control and he had to be so careful about when to take his shots but shortly after we met, he changed to a pump and things have been so much easier to control and a lot less daily pokes. Just wondering. Thank you for sharing your story.
Yes, that’s the goal we’re working towards with his endo. He’s still on small doses and they’re trying to figure how he responds to insulin for a few more months and then they’ll get him on the pump. We’re really looking forward to that!
Marian, As a wife of of a type 1 diabetic on the insulin pump, I know that living with it is not always rosy but I am so proud of your family and the support that your son receives. Here’s to hoping that a cure will be in your son’s future!
I appreciate all your feelings in reference to you sons health. Ediaying him and your family on what to watch for and keeping mindful of diet especially with exercise not to fall short of calories. Hope all works well.
I missed a great find today. I was at a Big Senior Center rummage sale. I saw a Locke white bowl with a lid a ladle and a dish sitting under it. They had it marked $4. It had ribbed areas on the lid, some ornate markings on the lid’s handle . Soon it was time to open the doors to the large rooms where donations took place and I needed to get in line for the good deals. Lol well I forgot to come back for this dish until much later so someone else liked it too. I didn’t know if it was ironstone and don’t recall markings on the bottom . There’ll never be another but I read your tales about finding some and want to ask you what I look for ? Thanks ,MJ
Educate and look are to replace the misspelled words in my recent post
Marian, I rarely respond to blogs, but this one really hit home. My son was diagnosed with T1D at 28 months. Yep, 28 months. I won’t tell you it wasn’t hard because it certainly was. There is so much I would like to say to you, and I have a lump in my throat now just remembering it all again. The most important thing though is that he will be 34 this month and is doing great. In fact, he is in Australia this week on business and then onto Japan. You have a great family and will get through this together.
God bless your family Marian.
Great blog today M. Looking forward to see you all next week. The cousins are all charged up.
Love you, love your family, love your blog…<3
Marian, My son Andrew was diagnosed at 18 month old. I remember like it was yesterday Nov, 6 1985. I was 6 months pregnant with my other son. I remember Andrew being so small, his fingers so tiny he was so very ill. He lost 6lbs in less then a week, he could talk some, he was so very thirsty, I caught him drinking out of the dog bowl, he kept saying “juice Mommy, juice”. He had been totally potty trained and started peeing on himself and could not hold it in. I have a brother with T1D who was diagnosed at 8yrs old. I knew immediately what it was, my husband and pediatrician didn’t believe he could have possibly have T1D. The Dr did run a blood test and put it in stat when he saw how Andrew had lost weight. I was so scared, so many things rushed into my thoughts. Fear, guilt, pain for my son. We lived in Marietta GA. Andrew was admitted to Scottish Rite Children’s Hosp part of Emory University and Hosp. He had the best of care. We were in a long time, over a month. Andrew’s Blood sugar was just over 400, I was told it was so good I recognized it and caught it early, with in a couple days. It was Christmas when we got out, Andrew adjusted well, he was so tough, such tiny amounts of insulin even 1/4 units. He started doing his own blood tests and shots by the time he was 2 I always supervised. By the time he was 3 he would critique his Dr’s and nurses on how they did their shots and bloodwork. Our other son Matt wanted his bloodtest and snack every night just like his big brother. I have to say a I never had any problems with my sons getting their shots. They liked showing off to everyone they they were not afraid and it didn’t hurt. Fast forward to 2014, Andrew is 30 years old. He lives on his own, he runs marathons, he plans on running the NYC Marathon for the JDAF he is raising 3500 so he can run in it. Do I worry about him, every single day. I still carry a snack in my purse for him even though I don’t see him everyday. I always keep certain things in the house for him. When he does get sick he calls me, I usually go to his place until he is better and feels like himself again. My brother is 58 he used the Omni Pod I highly recommend it. Andrew is looking into it. It is made in Ohio, it was made for kids, but adults love it. No tubes, you can shower, swim with it, you can put it on many different locations.. A nurse I know loves hers. You can call them give them your insurance info they will check your insurance for you and coverage. There are You Tube videos on how easy it is to use. Do check those out, my brother says he feels like he has no diabetes at all now. He loves how well he has his blood sugar controlled and how he feels no roller coaster highs and lows. He says he has so much more freedom with his diet and schedule. He wishes it had been available years ago. He said his life would have been a lot different. My brother was diagnosed 1964, there were no in home blood tests, glass syringes that had to be sterilized, beef and pork insulin. It was hard to manage his diabetes. He is a nurse and takes care of others. Marian good luck and God bless you and your son, I pray for a cure.
My 8 year old granddaughter was diagnosed at 6 years old. She’s my little hero. She carries her little bag everywhere she goes and is such a brave little girl. It doesn’t seem right to have to give a grandchild a shot. I know God has a special plan for her life. She’s such an inspiration. My husband has had it since he was 12. He wears a pump and hopefully little Charlotte will get her one soon.
I hope to see you at the Chapel Market in Montgomery AL. I live right near there!! I love your Blog.
I was a teacher. I know kids with what your son has and my cousin via his mom (? Is it hereditary for she had it too) has it as did another cousins child. And a very close friends two grandkids.
So I know the difference but it doesn’t make me happier.
In fact as I read about glitter I wondered about your son. I do not know you nor you me. But I can pray. Especially because I was a teacher who was upset with the parents who did NOT care for the child’s condition and the secretary kept him right beside her to keep checking. The nurse room was too far. Yes, schools care that much.
So I am praying for now and the long haul. Jesus said, Let the little children come unto me. I see your son safe in the Son’s loving arms as he has to rely on being obedient to all the rules of the game. Hmmm. A sermon from that?
Very inspiring Marian. I will be praying for you and your son, as well as the rest of your family.
If you can’t share your cares and problems with friends and people who care about you, then you can’t share at all. May God bless you and your family. Praying for a cure in the very near future.
Love you blog.
Was thinking about how we have a family in our church who has 3 children with type 1 diabetes which is extremely rare. I have heard of some of the same struggles in their family-only with 3 I’m sure you can imagine how difficult that is for them. Yet they have grown closer to God and to each other through this and they’ve had opportunites to travel around and speak to others and how the Lord is helping them through this. Pray your walk with the Lord is strengthened through this as well and that your son will live a long healthy life realizing that his life is in God’s loving hands.
I cried last week as I first read about the bionic pancreas, and when I told my 8 year old son his eyes went wide and his smile lit up his face. Of course I warned him first that this was something he would maybe get to use in college! 🙂 I’ve been thinking of you this summer as we just hit the 1 year milestone. My best friend asked me what Heidi today would tell Heidi on diagnosis day. It was an amazing thing to think about. There’s plenty of challenges, and there’s still baseball practices that get ruined by low blood sugars, bedtimes that get pushed back because of a site change, parties that are nerve racking because of guessed carb counts, but I wish I could tell Heidi on diagnosis day how much better my son’s quality of life would be just one year later 🙂 Keep at it Miss Mustard Seed!! You’re doing a great job and all of us T1D parents and kids (and adults!) appreciate you getting the word out and helping raise money for the JDRF 🙂
I am sure you have by now; did you get an ID wrist or neck that says he is T1D? At his age or any age very important if there is any type of emergency.
My husband began his journey type 2 and he is now both ; on meds in 2 different types of insulin. I am very proud of your young champion dealing with his T1D like a trooper 🙂
Thank you for keeping your readers posted 🙂 it lets us know how to pray for you and your family.
I forgot to ask, did your husband serve in Viet Nam? My husband 3 yrs. ago found out through the VA that agent orange exposed veterans his age were becoming diabetic. They ran test and found that my husband’s diabetes even though his Mom and uncles had it was due to agent orange.
It can effect the children and grandchildren.
Marian, my heart goes out to you and your son. I have chronic pancreatitis, so T1D is a possibility in my future (as well as a bionic pancreas). I’ve done a lot of reading about diabetes. It can be overwhelming. It sounds like you guys are handling it really well. You probably already know about this, but there is a great online support group called Tu Diabetes. Thanks for sharing with us.
Hi there,
I think its brave that you shared your story. I’m in the medical field, and now work as a nurse practitioner in psychiatry.
To be able to share , i believe is to first have digested the changes within your family , wrap your head around it than to give it words.
I wanted to share a resource with you. It’s called psychcentral and is a wonderful resource for folks going through life with all its ups and downs. the contributors are a bright group of psychologists that are able to put you in touch with so many of our every day struggles in a meaningful way. Take a look.
when I am not seeing patients i too am cutting down tables , sanding and painting. My outlet.
Best to you,
marisa
Good Morning…
I wanted to share my knowledge..I am a school nurse and with school approaching it can be a stressful time for parents and child. I admire your family’s approach to dealing with Diabetes. If you have any questions feel free to contact me.
Karen
So happy to hear the update and that all is going well for your family as you adjust to life with a Type 1 diabetic in the house. I just passed my 30th year and, thank you Lord, no complications! It’s a day to day walk, trusting God to carry me through each day. But isn’t that what a Christ follower is supposed to do anyway?! 🙂
I know a young lady, 22 now, who was diagnosed at 7. She now wears an insulin pump and loves that it takes care of much of the management for her.
Thank you for the update Marian.
My son is 15 and was diagnosed with T1D at 4. It’s amazing how knowledgable they become at such a young age and Lachlan has been great at reading labels, calculating insulin and keeping track of his carb intake from day 1. We were also blessed to have an easy journey when it came to his acceptance of testing and injections.
We are currently going through a rocky teen/hormone phase, but great support from family and medical staff are helping us fare the storm and I know we’ll come out the other side, closer, even more educated and ready to help the next family who faces the same hurdles.
I still sometimes grieve for what might have been if our lives were not impacted this way – but I know my son is the very compassionate and mature young man he is today because of his journey with type 1 diabetes.
Good luck with the walk and your fundraising. We haven’t participated for a few years, but it is a wonderful event, not just for the money raised toward research, but for the gathering of the JDRF community and the opportunity to make wonderful friends who truly understand what you live through 24/7 with a T1D child.
xx
I was talking to a friend at football practice about your products and she told me about your son who was diagnosed with T1D. I really wanted to read your blog and see how he was doing and how you as a mom were coping. I guess I was looking for inspiration,
My son Luke (9 years old) was diagonosed August 9th while we were on vacation in CO. All week he had been showing signs of a stomach bug but on the last day my husband and I googled signs of diabetes and he had all the signs. We were planning on heading back home the next day and have his pediatrician look at him but we decided to go straight to the ER at Children’s Hospital in Aurora. Immediately we asked for a blood glucose test and within 30 min of arrival they had diagnosed him with T1D and began treatment. We truley believe that God did not give Luke T1D but he guided us to the right place and gave us the knowledge to ask for that test.
Like your son, he has been amazing through this whole process and has been extremely brave. He has great days and bad days and we had someone tell us that we need to give up on the idea that 1+2=3 because in Diabetes world it never does.
We will be walking in the Tulsa JDRF walk on Novemeber 1st. Would love to hear how your walk went. You are a several months ahead of us on this journey and would love to hear how he’s doing and how you are doing. Like you and many others, we pray for a cure daily! JDRF is getting close and the money raised only helps us fight the battle!
Soni, Oh I want to give you a huge hug! I know it’s such a difficult thing and, while T1D has become a normal part of our lives, it’s still difficult. I still have those days when I realize that this is always going to be with us and him. Yes, whoever told you that diabetes is tough to figure out and doesn’t make sense a lot of the time is right! It is so frustrating that you think you’re doing everything right and the numbers don’t make sense. Hopefully Luke will quickly learn how to recognize when he’s feeling low and high, so he can manage it better.
Calvin, our son, is on the waiting list for the pump right now and we’ve heard that’s a life changer. We just got him on the continuous glucose monitor two weeks ago and that has been amazing. Since Calvin is so young, he doesn’t know when he’s feeling low, so this lets us know when he’s getting into trouble and it’s also helped us with correcting his highs.
The JDRF walk was a really great event. It was nice for Calvin to see other people with the “I’m T1D” stickers, so he knows he’s not alone. The progress towards a bionic pancreas is so encouraging, so it’s something I definitely want to support. I think in Luke & Calvin’s lifetime, they’ll have a better treatment or even a cure.
Thanks so much for reaching out. 🙂