I have been wanting to write about this feeling that I have had over the past few weeks. However, part of me is very reluctant to share what I am feeling. In part I am afraid that people will judge me and in part I am ashamed that I feel the way that I do.
So please bare with me as I search for the right words to use to adequately explain the emotions and feelings turning inside.
Lately it has been a struggle to keep my son on track with his diabetes care. Don’t get me wrong we have made many strides in getting to a better place but it has been a struggle. In my efforts to help him to be well I often get frustrated by his unwillingness to take care of himself. I sometimes get down right pissed off that he gets upset with me when I bring the meter to him or prepare his insulin for him.
This is where I beat myself up. I know that this has been an even more difficult transition for him. Anger for getting a diagnosis that has no cure and will be with him for the rest of his life. That even when I am not here for him that he will have to take care of this health on his own. That sucks. I know that he has days when he is tired of this disease and that he wants to hide from it. I also know that I am the only parent he has to help him through this and I am the one person he can show his true emotions to. I also know that he is a 14 year old boy. Still a kid, that has not developed all the skills to take care of himself.
Having that knowledge sometimes does not help, because sometimes it makes me mad, and sometimes it pisses me off when he doesn’t care for himself and sometimes it hurts to see him hurt and sometimes it frustrates me that I am the only one taking on his care.
I would love to say that I am a picture perfect parent when it comes to helping him manage his diabetes and emotions. I am not. I try my best with what I have but it is a struggle as a single parent to make it all work. It is really tough to know how to help him and to know when to push him.
This is a dark time in my life and I know that others have been here before me but I am not sure that we openly talk about the feelings we have as a caregiver. I know that I am hesitating to post this because I am afraid that I will be harshly judged. The feelings that I have can’t be mine alone, but because they are not positive in relation to what I feel I am supposed to feel as a caregiver I do feel alone and not understood.
Yesterday, I joined the diabetes community by watching the Diabetes Hope Conference. This virtual conference was at times difficult for me to watch. Please let me explain. As most of you know my son was diagnosed at the age of 12 a little over a year ago. As a single mom, this past year and his new way of life has been one of survival. Some day’s feeling like we barely survived.
I did not have time to think about the ever lurking complications that diabetes brings. To be a little more honest I know that I have not let myself feel the scary feelings of what could happen to my son in the future.
The crew from TuDibaetes – Manny, Emily and Mike were very transparent and sincere with their comments, which led me to attempt to feel fully my emotions of what my son could possibly face in the future. Their honesty was refreshing in that they truly explored the fear and anxiety that many face with this disease but worked without effort to share that they too don’t wish to think about complications.
This virtual conference gave me an understanding that hope in regard to Type 1 Diabetes is not in the belief that my son will be free of complications in his life, but hope being an understanding that he will be surrounded by a community that will support, encourage and uplift him in his journey.
Emily Coles of TuDiabetes shares her thoughts on this subject in this post.
This has been a really tough year one that has tested not only my patience but my strength. Brandon has struggled with accepting diabetes and he has spent many months angry. Frankly, I have spent many months angry. Diabetes stole from me this super funny kid that laughed and joked and left me with this kid that slammed doors, and cursed and broke plates.
During this time there were days that Brandon refused to test his blood sugar and take his insulin. His therapist suggested some extreme forms of getting him to be compliant. Things I was not ready to do and struggled with. I wrestled with the ideas she gave me and the kid that I know. A sweet boy that is uber funny. When spoken to gently can be reasoned with. One that I knew was trying in his own way to come to terms with what life just dealt him.
I on the other hand was dealing with increasing anxiety of making sure that my son would not die. That he would not damage his body with the highs. This anxiety took over. This anxiety made me angry when he would not take his insulin because I was scared that he would die, that he would cause damage because of the highs.
It took time and patience, it still takes time and patience. And by the expectations of his therapists he may not be making the progress that they would like him to make, but he is making progress. What makes me believe that he is making progress other than the lowering of numbers? Let me tell you.
About two weeks ago I went into his room to wake him up for school and take his blood sugar. This is a task that I need to be throughly prepared for. I learned quickly not to sit by his legs during this new morning ritual. He rolled over and stuck his hand from underneath his blanket. “Hey bub, what finger do you want me to prick.” Remember he is still under the blanket except for his hand, facing the opposite direction. He slowly pulled back four fingers to revel his middle finger. There it was, his humor. It’s back. Giving Diabetes the middle finger was absolutely priceless to me.
I remember being shuffled into the hospital room and the many doctors and nurses coming in and out of the room getting Brandon settled in to his new safe place for the next four days. While this was happening and while I was trying to understand and process how our world was changing, I remember thinking how am I going to do this? I am barely making it. With working all day and sometimes really long hours, how am I going to make sure that he gets what he needs and that he is getting the proper doses and wil he take his insulin while I am gone?
I thought to myself how am I going to make this work? I have to work and I have to take care of my son.
My job and the needs of my son were consistently competing. I always felt guilty, a constant gut wrenching anxiety over took me. I felt guilty because I had to work and during the summer Brandon’s A1C skyrocketed. I felt bad that I had to call off of work or skip a networking event because of my son. The tugging at my heart of making money to put food on the table and getting my son to all of his appointments and being there to monitor and make sure that he received the insulin he needed was making me sick.
As a single parent there is always that struggle to strike the right balance of being at home with your children and keeping your job. I remember when the kids were younger that constant feeling of failure was with me every day. When the kids got older and were able to do things on their own I felt a little more at ease. However, the anxiety returned that day in the hospital when the staff was floating around us. How am I going to do this?
I would like to say that my ex-husband is highly involved with his children and knows what is going on with Brandon’s care. I would like to say that he is my support team as we wonder along this path of diabetes. He did make a valiant attempt in February to say that he would be there when he was sick or needed to go to the doctor. The really sad fact is that he has not been around. He doesn’t even know all the changes Brandon has been through with his insulin or that he did a saline trial with an insulin pump and he determined that he didn’t like it. He hasn’t even talked to his children since July.
When I look back at all that we have been through since February I look at my son and see how he has struggled and how he has triumphed. I see the days when he is sad and frustrated and the days he feels like he is a champ. Through all my anxiety and worry I am the one that holds his hand when he is scared and chokes back tears to show him how to be brave. No matter how hard this journey is or how tired I become I know that I get to experience this with him and watch him grow every day into a super brave and confident young man. This is what helps me to make it work (along with phone calls to my best friend and daily conversations with my higher power.)
Every ex-spouse has a reason that they divorced and often we have negative feelings toward our ex’s. We often curse them under our breath. I have felt and done all of those, but interesting enough the feeling I have for my ex husband is sadness. I am sad that he does not get to see Brandon grow and develop in to the wonderful human being he is becoming.
Our first day in the hospital there were so many thoughts going through my head. As I followed the ambulance to the hospital, I made a call to my sister in Ohio to tell her about Brandon. We quickly made the decision not to tell mom for a few days. At the hospital the Endocrinology team advanced upon the room. Doctors and nurses and diabetic educators and dietitians all came in to talk and to learn about his history and to reassure us that it was nothing that we did that caused the diabetes. They asked us about his eating habits, is there a family history of Type 1 Diabetes, autoimmune disorders?
I first thought did he get this from me? His father? Would he have to be on a pump for the rest of his life? I didn’t want him on a pump for the rest of his life. Would he have to eat snacks out in the hall way at school like my next door neighbor did when we were kids. I can’t cook – will I have to start cooking? Will we have to eat vegetables?! I am a single mom how am I going to handle this when he is home by himself? I am a disorganized mess how am I going to add this into the mess we already have?
Then I saw the changes that first day, he had spunk, his cheeks had color, the circles under his eyes began to go away. The food, he ate so much food! I then saw something that humbled me. He was amazing. He handled this with grace and humor. I was not only proud of him but he was and is my hero!
It was amazing to have such a dedicated team to help us through our first days. Our first four days with the disease were spent in the hospital with a support team to guide us and teach us and hold our hands. The place we didn’t want to be became our refuge and leaving the hospital was scary.