Category Archives: parenting a child with diabetes

A Salute to the D-Warriors

Back to it. Back to that new normal life…where diabetes isn’t in it 24/7. It is still strange but this past week with my son was also a bit of an awakening. One in which perhaps more people should be exposed to.
My son was diagnosed with Type 1 diabetes over 14 years ago. He lived with me the bulk of that time. In September he chose to move to finish high school with his lifelong friends. It killed me inside but it was a choice that he had to make.

In the past six months, I have not had to get up in the middle of the night to test bg levels, but I still wake up. I haven’t had to worry about site changes but I still am in charge of ordering supplies. My role has changed. It is still taking some getting used to.

I was thrown back into the fray last week. Diabetes came back into my life in a huge way. It gave me a new respect for my son and for all people with diabetes. It brought a new pain to my heart. I wished that others could have seen what I saw and experienced what my son experienced. Perhaps if more people did, then more doctors would fully get it. Perhaps if more people did then more politicians and insurance companies would understand. Perhaps then more research projects would be funded and there would be a greater understanding and drive for a cure.

My son arrived on a Monday after a 10 hour day of driving. He was high. I asked him what was up. He explained. “I should have set an increased basal rate to cover all of that inactivity driving in the truck. I ate at a fast food restaurant but the meal I chose wasn’t too high in fat. I may also need a site change.”

I looked up the meal that he had eaten. It was a lot higher in fat than he had thought. We discussed extending boluses to cover those high fat meals. We talked formulas and I hoped that he might remember the concept the next time he ate out.

Because of those small oversights, he was high for the rest of the evening. He went through gallons of water and found it hard to socialize when he was spending so much time in the washroom.

His visit continued this way. There were highs. There were logical reasons for them. There were mistakes made. He is only human. Together we worked to fix them. There were injections and new sites. Sites fell out and got kinked. There were replacement sites and more injections to cover the missed insulin and bring him down. There was more water. He spent more time in the washroom.

I was exhausted. He took it all in stride. We discussed strategies. I suggested changing sites a little sooner when he was having highs. He told me that when he got too high he felt a burning in his legs and after a bit he would smell a strange smell. He said it was like his brain was frying because he was so high and he would smell it happening. My heart broke.
After days of “stuff happening”…a bad site, a poor carbohydrate calculation, a bolus delivered wrong, we finally saw him in range for longer than an hour. He was able to sleep through the night without a trip to the washroom every half an hour. He was able to put down the water bottle and enjoy a casual glass of diet Dr. Pepper. The battle was over and he had won. The war would continue another day however.

As he got on the plane for his trip home, my hands-on role ended. I was no longer in the trenches with him until he had another break and came to visit. That was not the case for him. His battle would continue on the plane where I learned after he landed, that the air pressure of the plane would impact the insulin delivery on his pump. Once again, after the fact we would know the reason behind a high or low but were at that point powerless to stop it. We hadn’t known.

How stressful must this be for a person living with diabetes? My son told me how his doctor lectured him when he goes to his appointments (although I am guessing that the bulk of his lectures are just). He stated that he the CDE he was sent to was more concerned with reading him documents than teaching him something useful. He is just beginning his journey of learning to be his own advocate.

As much as I complain about his lack of self care. Each time we talk, I am amazed at how much he does know about his own care. Some of the information he has heard from my lecturing and teaching, as well as the things he has learned at CWD conferences has sunk in. He is a teen and may not always do what he is supposed to but he does have the knowledge when he chooses to apply.

It will be up to him to apply the knowledge. It will be up to him to show his medical team that he is very educated in his care. It will be up to him to decide to take care of his body. It is a huge challenge. As people who do not have diabetes, it can be easy for us to judge and demand better. It only makes sense to take care of you. You will feel better. It’s not always that easy. Stuff happens.

This week was exhausting and I didn’t have the physical toll that he did. I was the coach on the sidelines, offering help when I could. I made suggestions, I took over care, I carried a small amount of the burden but he carried the bulk of the weight.

I could see him sitting in a meeting with his diabetes team and having them see this past week’s readings. There would be questions. Would he feel defensive? I would have. Would he feel judged? I would have. Did he do his best? Yes. Do the numbers look like it? No…and yes. Readings were high, but then we had a victory and things came down…before the next stumble and up they went. Should we have known better? Yes…and no. Yes, he knows to increase his basal when traveling but no he didn’t know the carb counts for some of the restaurant foods. Even with calorie counting software, errors were made. How could we have known that the site that went into his leg would bend—twice? There are so many factors going into managing diabetes. Even for those of us who have lived beside someone for 14 years, we can’t fully understand.

As a parent it is torture. I want to fix this. I want to take it from him. He doesn’t ask me to. He knows that I will do my best. When he stumbles or appears not to take care of himself the way that I would like to see, I get upset and even angry. I understand the toll that it can take on his body. I know the toll that a causal attitude will take on him long term. I know that he has the knowledge and I pray he will chose to use it sooner rather than later. I don’t always remember the struggle to balance being a teen boy and being a person with diabetes however. It has to be hard.

I won’t quit demanding the best from him. I won’t be able to stop being disappointed when I don’t see adequate testing. I will take this week and use it as I go forward however. It has been a great lesson to share when advocating for better care for people with diabetes. It has given me a new respect for all that my son deals with when Mom isn’t there to carry some of the burden. It has reminded me of how much diabetes sucks and how despite the fact that a lot has changed in 14 years, we still have a long way to go.

She Exposed her Pancreas to the Storm!

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April 1 Mother Nature played a cruel joke on the area that I live in. We were subjected to an incredible amount of snow that just did not want to end.  I was not happy at all.
 
To make matters just that much worse, I actually had to go out in the mess and drive! I hate driving in snow. I hate having to worry about other drivers in snow. Basically I would much rather hide under the blankets until summer but despite my disgust, out into the not so lovely winter wonderland I went.
 
As I was cruising the city streets on my way home, I watched a young lady battling the elements to get to her destination. I was seated in a lovely four-wheel drive truck that was producing heat and warming my back with heated seats. This poor child was outside walking in the snow and the wind.  I shivered as I watched her.
 
When she walked in front of the truck I saw something on her belt. I looked again. There was no doubt. She had an insulin pump on her waist! What was she doing with her pancreas out in this weather? Wasn’t she concerned about the insulin freezing? I couldn’t see her tubing but I could plainly see the pump. It was exposed to the wind and biting snow.  That could not be a good thing. I was certain that having your pancreas hang out during a nasty spring/winter storm was not a good thing.
 
Despite my concerns, she crossed the street and my light changed. I continued to make my way home but I also worried about this girl. Did she have very far to walk? How long would she and her pump be exposed to the elements? Would she run high because of cold insulin?
 
I then began to worry about myself.  Why was I obsessed by this? Because I am a mom.  Because my mind thinks like that.  Because I worry…even about children with diabetes who aren’t mine. Oh my!

5 Things that I have learned about me over the past 14 years…

Diabetes has a very steep learning curve.  Some of us have no medical knowledge and yet are forced to learn about giving needles and drawing blood. We must learn about nutrition and exercise instantly.  We learn how to work with our children and help them to understand what is going on in their bodies.
 
In a moment, our world changes. As I have said before, it completely explodes your world and leaves you to work with a new landscape.  It does not end your world, it just ends that naive world in which you may have existed before. It certainly did for me. As we navigate this new landscape, we learn a lot about our relationships and about our children. I thought that today I would look at things that I have learned about me over the years…
 
1. I became more empathetic thanks to diabetes.  I like to think that I have always had empathy.  I try to never judge a book by its cover and I tried to teach my children to do the same.  We never know what is going on behind closed doors or what is going on inside another person’s body. Just because they look well does not mean that they are not struggling with something that we can’t see.
 
Kerri Sparling brilliantly illustrates this point in her book Balancing Diabetes.  If you haven’t read the book, you should do so.  You will read about her response to a dinner conversation in which one person slams a family member with diabetes who “eats whatever they want, and they never test their blood sugars, and they never go to the doctor.” (page 161) Kerri stands up for this unknown person and asks how they know that this person really doesn’t do all of these things? She had tested and bolused at the table without anyone knowing so perhaps this person did too.
 
Diabetes has brought me that same sort of need to defend others.  When you see my son, you think that he is perfectly healthy.  You don’t see his broken pancreas unless you look at his insulin pump and then many would still assume it is his phone.  I don’t want people to think that my son is broken. He isn’t but he does have to deal with things that other young men his age don’t.  He looks after his diabetes privately. He does not show people how much work goes into looking and being as healthy as he is.
 
2. I have an even bigger mouth than people thought. I have always believed that if you don’t like something speak up.  Things will not change if you mutter to yourself.  If you want to see things happen differently then talk to people who can help you to make that change. Listen to their perspective and together work to create something that you can both live with.
 
After my son was diagnosed with Type 1 diabetes, I had a greater need to fix things. I think every parent who goes through this diagnosis of a child has this same feeling on some level. We often feel that we let our child down by allowing them to develop diabetes (boy do we have egos! Like we could have stopped this?) Our only way to “fix” things is to work to make the world better for them.  We learn as much as we can, educate our schools to protect our children, and we work with our diabetes team to get the best care that works for our child.
 
Some people will write letters, lobby government officials, and become very active in educating the rest of the world about life with diabetes.  That was me.  I wrote letters. I started a website. I contacted government officials. I wanted life to be fair and just for all people living with diabetes. I wanted to protect my son and all of the other children out there living with this disease. I wanted to make things easier for them…and I still do. I stood up to administrators and Ministers of government. I learned that they were all just people who had families.  They were not scary people with a lot of power but loving people who were often willing to listen to you.
 
I always knew that I had a mouth. As I said, I always believed in standing up for what I believed in. I didn’t know that if I stood up for something others would stand with me and that together, I could lead people to create serious changes in policies.
 
3. I didn’t know that I could touch people’s lives as much as they touched mine. When my son was first diagnosed, I was lost and felt terribly alone. After a number of months, I reached out to a group of parents online.  They touched my life and helped me in more ways than I could imagine. The inspired me to do more.  I was therefore honored when I was asked to be a part of their Canadian Children with Diabetes Friends for Life conferences.
 
I am a huge fan of these conferences and all that they give to families living with diabetes. Each time that I am at these events, I am humbled and amazed by what I see. Families become empowered and stronger before my eyes. They meet new people, hear new philosophies and get the chance to just talk to people who “get it”.   When I get to speak about issues that I have dealt with and offer ways that have worked, it is wonderful to have people come up to me later and say, “Thank you! I can do this now.” It is something that I never imagined that I would be a part of 14 years ago.
 
4.  I am not in this alone.  Fourteen years ago, I knew no one with children with diabetes.  I was given a phone number of a family diagnosed just before my son and we talked on the phone one day.  It would take us years to meet up.  In the meantime, I would find an online support group that helped me find my way.  It empowered me and educated me.  The members of that group became my family. They had been there, were living there, and had experienced that. They understood milestones like your child lancing their finger for the first time. They got the sick humor of watching blood gush across the lunch table.
 
Over the years, that support team grew.  I found people in my community to meet up with. I became involved in national groups and met new parents who were also struggling. Eventually social media grew and I became involved there finding many more parents and people living with diabetes.  Being able to share milestones and fears gives me the strength to move forward. I are far from alone today.
 
And the fifth thing that I learned? Diabetes makes us stronger than we ever knew! Life presents challenges.  Life as a parent presents challenges. Life as a parent of a child with diabetes adds another level of challenge to the equation. Many people have it worse. Many people have it better. I have cried in the shower. I have sat alone in the dark and shed a number of tears. I have been grateful. I have been frustrated but most importantly, I am still here to tell the story…and so are my children.
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Fourteen Years Since My World Exploded

14 years ago today my world turned upside down. It was not a fork in the road. It was not a minor blip on the radar of life. A bomb exploded and it forever changed the landscape of my life. 
 
14 years ago this morning, I was looking at a sick little boy in my arms and was waiting to be able to take him in to see our doctor.  I was ignorant of what was to come. 
 
14 years later, my son is a young man making his own decisions and stretching his wings…who just happens to live with Type 1 diabetes.  I am stumbling to come to terms with my new role of no longer being a hands on mom and often find myself looking back to see what I have done in hopes of figuring out where I will go next. 
 
14 years have brought many changes.  Insulin pumps are more readily available and continuous glucose monitors are no longer things found in hospitals that are blinded for 7 days.  They are real tools that families and individuals are using in real-time to help fine tune their care. 
 
14 years ago, diabetes threatened to take the life of my son.  Today he is strong, vibrant and learning how to handle his disease.  Diabetes does not control him. Its just his “thing” to live with.
 
We have not always seen smooth sailing. We have had our moments.  He has driven me crazy at times–failing to test or change infusion sets. He still can drive me nuts. I have yelled at him because of my own failings and frustrations.  We are not perfect but we are living. As the commercial says, we are living with diabetes. It stops him from little. 
 
Diabetes has brought me the most incredible friendships.  I have friends throughout the world who have reached out at various times in my life to help me up or shove me forward. I hope I have done the same for them. 
 
14 years seems like such a long time and yet I can see us back in that ICU just like it was yesterday.  Some things you never forget…my son has but I haven’t. Instead, on days like today,  I look back and say thank you! Thank you to the doctors and specialists that kept him alive and have taught us through the years.  Thank you to the Higher Power that has been with us through it all. Thank you to the friends and family who have joined us on this journey. Thank you for 14 years of good health and improved technology! 
 
Diabetes sucks but life after diabetes…well its still life and that is pretty amazing!
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Five Tips to Surviving Raising a Child with Diabetes

This month marks fourteen years living with diabetes. They were not easy years. They still are not easy.  Each year has its own challenges–sometimes it seems like each day has its challenges!  I have had some amazing supports throughout the years however. I found a family online, some of whom I have met in person and some I still hope to meet one day.  They have helped to keep me going–offering support, words of encouragement and the occasional kick in the bum to send me in the right direction. 
 
I thought it would be a great time for me to share with you a few of the tips and tricks that have kept me marginally sane and allowed me to get up each day. 
 
1. It’s okay to cry.  We all have our moments. We can’t carry the full burden of worry and care. It’s okay to breakdown now and then. Do it in the shower where you can scream at the top of your lungs.  Allow your child to scream too.  When you are both exhausted, hold onto each other and look at how best to move forward together.
 
2.  Find people of a similar nature.  Meet people online or in your community who get it.  Seek them out, ask them how they handle things and simply enjoy being around other people who get it.  Allow your children to spend time with these people as well so that they understand that they are no alone. 
 
3.  Take a day off. As a parent, take time for you.  Leave your children with you someone you trust and focus on you for a few hours or an entire weekend.  It will be hard at first. Diabetes will be in every other thought.  Push it further away until you can slowly feel the weight on your shoulders lift just a little.  Feel the tightness in your chest relax just a bit and breathe.  Give your child with diabetes a day off as well. Test for them, bolus or inject for them, and count their carbs.  Let them just be for a day.  They get burdened as well. Let them have that small break without nagging or worry. 
 
4. It is okay to punish your child for not doing diabetes related chores.  This one was huge for me.  As a parent, we carry some guilt when our children are diagnosed. We are to protect our children and somehow we failed and they ended up with diabetes.  No this isn’t logical but being a parent isn’t always about logic.  This is just how we feel. This feeling makes it very difficult to lump testing their blood glucose levels into the same realm as making their beds.  It isn’t but it is in the same realm as having a bath and brushing their teeth!
 
Diabetes sucks. We all agree but this is the hand that we are dealt. Testing bg levels and somehow injecting insulin into their bodies is not negotiable…to a point.  As parents we may have to come down in our expectations of how often our child will test and we have to remember that occasionally they will be feeling so “normal” that they may forget to bolus.  It is important that we find a balance between our ideals and what is safe. We then have to remember that we can say “Since you did not test at least once when you were out with your friends last night then you will not be allowed to go out with them tonight.”
 
5. It really isn’t our disease.  If we are not the ones living with diabetes, it is not our disease. Even if you do live with diabetes and your child has diabetes, it is still their disease.  That is an incredibly hard concept to deal with! We want to take this burden from them. We want them to do it our way because we have been learning for years and we know best…but none of that will happen.  We will hope that most of what we have told them will sink in.  We pray that we will be that little voice in the back of their head when they are about to do something stupid.  We standby ready to pick them up and help them when they stumble along the way, but we somehow have to let them find their way.
 
For me, the last point is the hardest.  I do not want my children to have to learn the hard way.  I don’t want them to stumble.  I want to protect them at all costs…but I can’t. I have to let them fly.  I have to be confident in all that I taught them. I prepared them to be on their own.  They are smart. They are good children.  They are a reflection of us. 
suriving D

Is Ignorance Bliss?

Yesterday my friend Tom Karlya asked the question, “Do you wish you had a lot more knowledge about (not the managing aspect) of what ‘it meant’ when you or child was diagnosed with diabetes?”  It got me thinking back to our life in the early years of diabetes.
 
I had no knowledge of diabetes before my son was diagnosed.  My mom had a friend with a son with diabetes but I knew them in the days before reusable pens, home blood glucose testing and the popularity of insulin pumps.  He was just a child who sometimes got to lay on the couch rather than play outside with the rest of us.
 
A bit more knowledge of the symptoms may well have empowered me to ask more questions and demand better answers the very first time my son was taken to the hospital. Hindsight is always 20/20 however.
 
After diagnosis, there was also a period of ignorance. I knew about Dead in Bed and I was suitably terrified. I understood highs and lows and really didn’t want to leave the perceived safety of the hospital.  When we were forced to go home, terrible things did happen.  One day my son was whining and demanding to go inside. It was the first nice day after a long winter and I was enjoying getting some yard work done. I made him wait. He passed out in the dirt.  I didn’t know that his whiny toddler behavior was also a sign that his bg levels were dropping. I learned quickly after that.
 
Our first illness and broken arm were also dealt with in relative ignorance. I was still trying to wrap my head around what to do and how things worked. I gave him insulin no matter what. I prayed he would eat–he often didn’t but when he was sick, that seemed to be okay. Ignorance allowed me to continue somewhat buffered. I didn’t fear all of the things that could go wrong. I was clinging to my own sanity, overwhelmed by what I did know and not able to begin to think of all that I didn’t.
 
My heart goes out to the nurses and doctors out there who do know.  The ones who can “see” and imagine to the extreme.  Ignorance allowed me to learn at a pace that I could psychologically handle. A bit more knowledge before diagnosis may have saved us some serious stress but after? No thanks, the learning curve was steep enough.
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Sometimes your the bug…

In honor of “throw back Thursday”, here is a post from June of 2009…

Sometimes you’re the windshield, sometimes you’re the bug

Today I am definitely feeling like the bug. It was after midnight and of course I was dying to get to sleep. I set my alarm for early next morning…my boys’ last day of school. I found a meter and a strip. I grabbed a lancet, waded through all of the junk that my youngest son had left on the stairs to his room rather than putting away and was off to test. One last check for a few hours. One check and I could sleep! We had been out for pizza to celebrate good grades so I was sure that he would still be high. He had been 16 (288) earlier so I was certain that I was going to be able to rest.

Wrong! I took the meter. I filled his finger with blood. The strip refused to suck. What the???? Okay, I cleaned the finger. I got more blood. I tried again. It just barely accepted the blood. I waited for the reading…E5. Error! Not enough blood. Oh the lovely four letter words that were on the tip of my tongue as I headed back downstairs again. I would try this one more time.

New meter. This one had to be better. New strip. Same lancing device. Back up the stairs, this time grumbling and picking up items as I went. I threw the items off to the side for my young son to deal with tomorrow and headed to his bed. Once again, I lance his finger. Once again, I got a large amount of blood. The strip sucked this time. I walked towards the stairs not even considering that I might have to correct. Good thing…he was 3.2 (57)! More choice words as I shuffled off to get some juice. I filled a glass, found a straw and went back upstairs for a third time in less than five minutes.

My son was not keen on drinking. I finally got him to sip. He drank t all except the last few drops which fly out of the straw and all over his pillow.  My cream pillow cases now have spots of red strawberry juice on them! I am choked. I hate diabetes. I clean the pillow cases as best as I can and then I wait. Why are 15 minutes a lifetime when you are dead tired and simply want this day to end?

Yeah! 5.5 (99) and I was off to bed for two hours. Oh the fun! Oh the joys! Oh where is my DexCom Seven Plus????

Psychic Connection?

The other night was night two of tossing and turning which in itself is not entirely unusual. This night was different though.  I was completely tired and ready to drop.
I had read a few pages of my book, done some relaxation exercises but sleep would not come.  After awhile anxiety began to creep in. I tossed and turned some more.  My mind began to take off on its own. There was no way to reel it back in.
I thought of my oldest son living up in Alberta.  Had he been injured at work? I would have heard if he had. I tried to shut my mind down again. I tossed and turned some more.  I thought of my youngest son. Was he testing at night? Was he in trouble? Had something happened? I again worked to calm myself down. Both boys, or someone around them, would have contacted me if there was a problem.  I was being foolish.  I was overtired. I had too much on the go. I had too much time on my hands.  There were a million reasons for me to be tossing and turning. Driving myself insane was in no way helping the situation. By 2am I finally fell asleep.
When I got up the next morning, I wondered if this had just been a reaction to so many years of interrupted sleep.  Was my body going through some sort of withdrawal? It has not slept through the night for any extended period in 20 years.  There was bound to be some issues at some point. I decided that I would try herbal tea with my book the next night.  All would be fine. My kids were still alive. No friends or family had been injured during the night. Obviously my anxiety was unwarranted. It was probably just my body being strange….and then I talked to my youngest son.
After a bit of chatter, I asked him how his readings were.  “Good except for last night. I was up all night because of a bad site.  I got it fixed though and was perfect during the day.” BINGO! There was the source of my anxiety!  He was in trouble the night before.  Well not trouble, but you know what I mean.
I have spent almost 14 years somehow waking to most diabetes related events. I would wake at unexplained times when he was low or high.  Something would bring me out of a deep sleep and make me test him.  We have no CGM.  I just somehow often “knew“.  Perhaps this knowing did not know distance?  I am not sure. Some people would say that I was crazy and this was just a coincidence.  It could be. I am not sure but I do know that I slept a little easier the next night.  Any tossing and turning  I experienced that night didn’t have a higher level of anxiety attached.  As long as my son is also waking and dealing with things…well I will probably always worry and be concerned but hopefully I will find a level of calm. If I don’t, I will text! psychic


Its Little Things…

I made my first trip to Costco as an empty nester the other week. It was a bizzare experience when you factor in so many years of living with diabetes and children.

There were the normal things..the boxes of cereal that I don’t need because my boys are not here to eat it.  There was the flavored water that my youngest loved to drink that I don’t have to worry about buying until he comes to visit.  There were also the meats that were packaged into portions for two adults to eat rather than two adults and a ravenous teen or two.

Next came the diabetes things…buying items and not worrying what the carb count was.  Putting items away and not worrying about saving the nutritional information to be referred to later.

I can’t say that it felt good. It felt..well a little empty.  I have been shopping and cooking for a child for the past 20 years. I still chat with them each day.  We still FaceTime or Skype and call but not physically seeing them each day?  Not feeding them each day? Well its strange. I know my wallet will appreciate it but its a lot harder for the heart to get used to.

They will visit and old habits will quickly return. I will, and do stalk up on all of their favorite baked and bought goods for their arrival.  This is just another phase of life. It just takes a bit to get used to as well.

I still wake at night. I almost long to get up and test…almost.  Life changes. Children grow. Normally we have time to prepare.  Sometimes we don’t.  Either way we go on with our new roles and make the very best of them. I continue to be there for both of my children. I continue to teach my youngest son as much as I can about diabetes and provide him with as many supports as I can. Its strange how the little things impact you.
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A New Chapter

This is a post I have put off writing.  My life has taken a new turn. I have not been sure how much I would share and let alone where to start, where to end and how to collect my thoughts and feelings into something sensible. I still don’t.

At the end of August my world seemed to shatter.  It didn’t of course, it simply changed courses at a time when I was least expecting it. My youngest son broke the news to me that since he was about to turn 16, he felt that he was old enough to choose where to live and he wanted to exercise his right to make that choice. I have been divorced from my children’s father for a number of years and we now live hundreds of miles apart. My son wanted to go home.  He wanted to move nine hours away to live with his father and be near his life-long friends.

To say that I was hurt and upset would be an understatement. I came up with all of the reasons that this was a bad idea. He gave me all of the reasons that it wasn’t. He said that he only had two more years and he could move out on his own anyway. I countered that these last two years were vital for me to help him, guide him and teach him how to handle his own care. This was to be our transition years. He countered that transitioning for two years while living with his father was an even better way to learn.  He does the bulk of his own care when he is with his father but if he got into trouble, Dad would still be a bit of a safety net. We continued to go back and forth on other issues like school, responsibility and learning to drive.

I told him that I would not allow it. I would not put his health or his education in jeopardy. I was hurt. I was upset. I cried more tears than I had in a long time. I contacted my lawyer. I reached out to friends and family.  I was soon reminded that this was not about me.  No matter how much I felt like a failure, my son was not moving because I was a terrible parent.  He was moving because he wanted the chance to be an adult. Saying no was saying no to my son and no one else. It would put a terrible strain on our relationship and serve no purpose that he would see. They were right so I cried some more and got to work.

I contacted my pump rep and got my son a new, in warranty insulin pump.  I contact our diabetes clinic and asked for his file to be moved back to our old doctor.  I bought school supplies, picked up new shoes and clothes and filled his prescriptions. I stayed up every hour that I could to spend it with him. I teased him a little about the things that he would miss out on  like bonding with our goldfish, fighting the dog for space on his bed, and lighting every candle in the house each evening. I told him that he could change his mind and stay. It wasn’t too late. He would laugh and say no.

His birthday would happen after he moved. We had an early birthday dinner.  We had an early cake. I gave him his presents early.  Inside of his card I gave him a list of things to remember, the first of course being how much I loved him, how proud I was of him, and that no matter what I knew that he was capable of caring for himself. He read my note. He smiled and put it away for later. The next day his father arrived, we loaded his belongings, I held him tight, we both cried (him a little, me a lot) and off he went.

As a stipulation of going, we arranged to discuss his readings every week. He was to upload his pump to the Diasend website and I would go in and see what was happening. This was one of the reasons for switching pumps–I could see boluses and blood tests from nine hours away. He also said that he would gladly Skype at 10pm when he had an assignment due the next day so that he could get my input. I really appreciated that –not, but reminded him that as I did with his brother, I would be in touch with the school and would be apprised of his marks and his progress.

Some people have asked what the big deal was? He was going to leave at one point anyway. I have to learn to let go. The big deal was one week to prepare myself when I thought I had two years…or more if he went on to trade school here. The big deal was he had not shown in the past an ability to take care of himself when away from me. It was as if I carried diabetes in my purse. If I wasn’t with him, he didn’t have diabetes and therefore did not need to test or do any of his care. I was scared of so many unknowns.

As a mother, I want to be there to protect my children–both of them.  I don’t want them hurt. Its my job to protect them. In the case of my youngest, that includes keeping him healthy and alive.  Now that I have had to hand his body over to him sooner, I feel like I have not completely done my job.  As I told him I know that he can do this. He has the knowledge and the ability but the desire is often lacking. Hopefully this experience will change that.  Perhaps now he will have that desire. Thankfully I have wonderful friends who continue to guide me and keep my expectations in check.

They have also helped me to find my way into this new chapter of my life as an empty-nester. Amongst many notes of support, a wise friend wrote…” A spectacularly difficult time for you Barb. But you have done everything you can to set him up for success. Now it’s up to him. Probably the hardest thing for all parents: letting go. Sending much love your way. You going through this will give you the experience to help other parents, whenever the time comes for them.”

So as Sandy wisely told me, I begin this new chapter in my life and in the life of Diabetes Advocacy–sharing with you the joys, fears, and realizations of parenting a young adult with diabetes from afar. It won’t be easy but parenting is never easy. Parenting a toddler, a pre-teen, a teen or a young adult with diabetes is even harder but we make it through with love, support and amazing family and friends.
letting go