I found these 3 words as journaling prompts at caregiving.com. Hold on tight here we go!
Last Sunday, I dropped Brandon off at diabetes camp. This is his second year at camp and when I pick him up he is full of energy because he is so excited to tell me everything that he did during the entire week and without electronics. This year we had to pick up his sister in Ohio so the car ride was a little longer.
He taught me all the camp songs and told me about his adventures canoeing and playing volleyball and the skits that they performed during the week. Needless to say he had so much energy during the first 2 hours of the ride to Ohio, that soon faded to a very long nap.
My ride to camp to fetch Brandon was full of anticipation and energy. I had missed him and his humor. My energy was up because I got to rest a little. I got to sleep through the 2 am blood sugar tests and take a break from counting carbs.
I know that we both look forward to camp, it is a week that he can be with kids like him and spend a whole week having fun and not worrying about diabetes. He gains energy by being a kid again.
I gain energy by turning off the worry for a week and getting some sleep. It makes me so happy to see him after camp, his smile and excitement about the weeks events.
Listen to my radio interview with Denise Brown of caregiving.com here.
Today I watched. Today I cried.
What did I watch, a video chat on Tudiabetes with mom and author Moira McCarthy.
Why did I cry? It has been about a year and 6 months since Brandon was diagnosed with Type 1 Diabetes, and it has been hard. Hard to watch my kind hearted son, be angry, watch him deal with something that changed his entire life. Hard to manage and understand why his numbers are, well are what they are. Hard to not nag and pester my son because I am fearful. Hard to do the god damn math that changes every three months. Hard to wake up at 2:00am to take his blood sugars. Hard to make sure that I am not forgetting my daughter. Hard to do this all by myself.
I actually did not cry about any of these things. I cried because she admitted that it was hard, to watch her daughter lie to her about checking her blood sugars and taking her insulin. That is was hard to find the right words when all she wanted to do is scream. That it was hard to deal with the shame that comes with all of this.
I cried because I was relieved. I cried because I am not the only one that has these feelings. I cried because she said that as a parent you need that break to reset. I cried because she 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.
Adventures in Traveling with Type 1 Diabetes
In January I launched a radio program on Blog Talk Radio called Conversations In Care. Once a month I feature stories and information about Type 1 Diabetes. I decided to do this because being new to this disease I know how much we just don’t know or understand. I also wanted to include a way for us as parents, and those with Type 1 Diabetes a place to connect. To know and understand that you are not alone in this adventure.
Yesterday, I had the pleasure of having Michelle Weisenburg, mom (CIO – Chief Insulin Officer) to Jordan who was 9 when he was diagnosed and is currently 15 and about to get his driving permit. We had a wonderful conversation about being a parent, wishing we paid more attention in math class and tips on how to travel well with Type 1 Diabetes.
I had so much fun with her on the show that I want to have her as a regular. There are so many things to talk about that I am sure I can convince her.
Listen in and Enjoy!
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.
What a powerful reminder. Thanks Scott
Today I am launching my first episode of T1Day on Conversations In Care on blog talk radio.
Conversations In Care is a radio program dedicated to care celebrations and issues. When I launched the program a month ago I knew that I would dedicate one show a month to Juvenile diabetes.
My guest is Kit from GET Diabetes Education. We will be talk about the basics of Type 1 Diabetes. I am a little nervous because I will be sharing a little about my sons diagnosis with the listeners. I am praying that I do not cry!
If you have a chance to tune in, I would love to have you listen. You can join in the conversation through chat or even by calling in to ask a question!
Call in Number (646) 478-4343
Hope to see you there!
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.