Back in the Saddle

Diabetes moved away September first of last year.  Sadly this also means that my son did as well. It has been a struggle for me. I have had to adjust to a new role and honestly, I am not always sure what exactly that role is.  I am a hands on Mom and being a mom from a distance has always been a challenge but with a soon to be 20-year-old living in another province, I am slowly learning.

With the Christmas holidays, I got to be a hands on mom again! It was wonderful to have both of my boys with me. There was baking to eat, meals to prepare and even the odd bit of chauffeuring to be done. It was great.

There was also reminding about bg checks, counting carbs and doing site changes.  Diabetes was back as well. I was worried that I wouldn’t wake up for night-time tests but I did with no problem.  I would easily wake numerous times during the night and get up and check on my youngest son. I knew that he most likely was not testing a lot during the nights on his own so I decided to help him out. I woke every 2-4 hours and tested to give us some great data to look at.

Since my son was here, there was no need for a Wednesday night phone call or waiting for him to upload data.  I have a cable here, as well as his pump and meter.  We could sit down together and discuss the many highs because of the constant eating.  We could talk about basal versus bolus and see what may or may not need tweaking.

With each night test and each dead test strip, I felt grateful.  It seemed weird to walk into his room and test, knowing how many nights I hated doing just that.  This time it was a privilege. I was helping my son. I was giving him a break and keeping him safe while he was under my roof. I wondered if his wife will one day help him this way? I have no idea. He told me that he has a girlfriend now. I wonder what she knows about his care? Knowing how private my son is, I am guessing that she knows next to nothing. That’s okay for now.  When she is important to his life and worthy of his deeper affection, she will learn.

Until then, I will test him at night when he is with me. I will be surprised how quickly we both fall back into old routines. I will remain amazed how quickly time flies and how much my children have matured. I will be grateful for the ability and the opportunity to help my son if only in small ways now. IMG_0164

Its not my disease?

We are constantly told as parents of children with diabetes to remember that this is not our disease.  When you are dealing with a toddler or a small child, it is really difficult to take this advice to heart.  A two year old cannot grasp what is going on in their bodies. It is Mom and Dad’s burden.  The challenge as parents, is to realize that while it was our burden, our children’s diabetes is not our disease.

Last week my son was having technical difficulties uploading his pump.  After many messages and much frustration on my part, I finally decided to ignore our weekly diabetes education session for a bit. I began to wonder if my son was on overload.  He had been to two different diabetes educators in a matter of weeks and had Mom calling him to discuss what was going on.

I began to think about taking a total break. Maybe I should just be letting the “experts” handle this. Perhaps it was time for Mom to just step away.  I was finding myself frustrated and angered when I wasn’t seeing enough data to make educated guesses about my son’s care.  Things were building up and I wondered if I was better just walking away for a bit. I began to think that he would have more peace and learn more if I just let it all be.

As my emotions churned and became more negative, I was hit by a thought. It literally felt like I was hit in the side of the head with a 2×4.  The  weight of this realization made me sit down and shake my head and wonder why it took me so long to “get it”.  I did not need all of that information.  The person who needed it had it–my son! My job was to ask him the right questions. My job was to guide him towards the answers but let him find his own solutions.

With that realization, a huge weight lifted off of my shoulders. I was no longer carrying the burden of an impossible task. I was now sharing, teaching, and supporting–doing my job as a parent.  It felt wonderful!

When I picked up the phone and began talking to my son, I asked him if he had the pump program open.  He was shocked.  Why did he need it? I suggested that he might want to see it so he could decide what needed to be done.

We then discussed the areas that he felt needed to be changed. I asked him what needed to be tweaked, a basal or a bolus ratio.  He said his carb to insulin ratio was perfect.  I asked him why.  “Because the dietitian said so.”  I laughed and said that he needed to say so! We went through a process of establishing if she was right.  The next step was to decide when to make the change.  I pulled out my John Walsh book and quoted to him how to change a basal rate.  He then made the decision of when and how much of a change he would make.

I was proud of him.  I was proud of me.  We were both learning.  He was being empowered and it gave me a huge sense of relief.  This really is his disease. It my job to help him, encourage him and be there to help but at the end of the day only he can test, bolus and adjust. Its all up to him.

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But I’m not ready!

I began writing this blog to share with other people living with diabetes. I wanted people to know that they were not alone in what they were going through,  This has meant that I have shared feelings as they happened–both positive and negative, real and raw.   Today is no different.

I have been going through terrible Momma anxiety and guilt about my son choosing to move back with his father.  I know in my head why he made the move that he did. My head knows that it was not personal.  My head knows that this decision actually had very little to do with me and had everything to do with being 16 and wanting to stretch his wings.  My sister kindly explained things to me and helped me to understand the thought process of a teen in this position. My heart still feels bruised. It still wants to take everything personally but it’s not all about me.

“It’s not all about me” is a really difficult concept to grasp for a control freak like me.  I like to think that I am a lot less of a control freak than I once was….and the scary thing is that its true! Life has made me learn to let go a lot more than I once did but I am still far from perfect (but don’t tell anyone). I still would like more things to go my way on my schedule. Since my son felt that life should be on his schedule and his schedule said it was time to leave Mom, my compromise when it came to his diabetes care was that we talk each week about his readings, trends, and problems. This was fine and has worked well for the most part.

We have bumps.  I can get frustrated by what I see (or don’t see). I do my best to keep my words constructive.  Occasionally I fail.  Last week my son headed off to his first diabetes clinic without Mom in attendance.  Mom, being a bit of a control freak still, had contacted the clinic, reminded said son of the appointment, and forwarded his current basal pattern and carb to insulin ratios to the nurse.  On Monday the nurse educator contacted me with my son’s A1c, noted the changes she had made and let me know where she intended to take things from there.

Remember that I am a control freak.  Remember that I spent years going to that clinic and my level of diabetes knowledge was equal to or better than their’s in some cases.  When we attended, they asked me what was new in care techniques.  I was the person who brought in information on Lantus, the use of glucagon during illness as well as the latest in pump technology.  Each time I have gone into any of our clinics (the one he is now attending and the last one that he attended with me), the team was always interested to hear from me what was new in the realm of treatment.  I guess that means I have a huge ego to go with my controlling personality and that can’t be good.

Back to the new nurse (whom I have never met), she felt that my son would benefit from more work with a CDE and set up another appointment with an educator closer to his home.  He is off to see this person today.  The gamut of emotions I am experiencing is crazy.

The rational me says “its good that he is exposed to new ideas and new people.  Sometimes someone else saying the same thing that you have said can allow things to finally click.  He has a good knowledge of his care.  He will not easily be confused by someone else’s suggestions. This is a good thing.”

The emotional, still wounded momma in me says, “Whoa here!! We are doing okay thank you! I am very capable of teaching my son.  We may be apart in distance but I am still as involved as I can be.  I have managed to maintain excellent A1c’s in this child for 13+ years,  Even on his own, this A1c would be coveted by a lot of parents who have teens with diabetes. Why are you pushing me out of this?”

That’s what it boils down to isn’t it? A momma bear who has been so ferociously protective of her children for so many years feeling pushed away on all sides.  Is it really happening? No.  The nurse from my son’s clinic has kept me in the loop of what is happening and the changes that she made.  My son has kept me in the loop calling me and telling me what they talked about.  No one is pushing me out.  They are working to do the very best for my son.  They are exposing my son to new ideas.

Yes, he has already been exposed to some of the best minds in diabetes care in the world.  He knows that.  He has to be able to learn to say, “I know that already” or “thanks but this works for me because…” He is learning to speak for himself.  That is the goal for a parent–to raise strong, independent children. I told my boys to never be sheep.  Do what you feel is right. Never blindly follow.  My son knows that this also applies to his health care.  He also knows that everyone needs help now and again and that with knowledge comes power.

He is growing. He is learning. My role is changing and it is changing quickly.  That is painful.  That is my problem.  I have to adjust.  I have to remember that it’s not about me. It’s not personal. Its life. Its change.  It’s what happens when our children grow up.

For those of you who are also dealing with these issues…you are not alone. For those who have gone before me, thank you for reminding me that this too shall pass. Change is important in all of our lives. It can be terribly difficult but change is what makes the world go around.

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