We have been prepped since the beginning of our relationship with our endo nurse and endocrinologist (insert my love for them here) about puberty and hormone reeking havoc on T1D and tight glucose control. No wonder they have visited this topic at every appointment we have had since the beginning…they were prepping us for this journey. PURE HELL are the only words I have to offer on this…but do not fret my mothers of T1D’ers not yet visiting this stage; not all hope is lost. You can and will do this. It is possible. You just may gain a few ( a lot) more grey hairs and a few (okay, a ton) of sleepless nights and shed a small amount of tears over it (omit small, you can water a garden all summer long with the tears). But, in the end; when it is all said and done, we survive and are stronger from it and more thankful because of it. Survival 101…keep your wits, follow your intuition and be ever-learning.
I was looking through my ‘facebook’ status’ and I must say I wish I could follow my own advice or even possibly keep the hope I have on certain days with me always. I do not, so I look back to get a little pep talk. Find that inner strength again. The following status rings true today, as a hard decision was made and followed through with:
“Today I am thankful for control. Learning when to take it, when to give it and when to share it… emphasis on LEARNING.”
It has been a long day. (shoot a long month, who am I kidding?) We have had many tasks to do today. One of which, was pull Kinzie out of school. What a tough decision that has been. We just have hit a bump in our ever-so-winding-road; and I am sure we will straighten out once again. Poor Kinz has just had a really, really tough time with highs and once we were done chasing the highs, we are met with a few lows (but not as many lows as I has expected) and it has taken its toll. She is up to her limits, nearly past them.
Kinzie doesn’t have much control over many aspects in her life. We have been advised from the beginning to give her control where ‘safe’ control can be given. Let her make choices when ‘safe’ choices are available and let her call the shots when they are a ‘safe’. So after our much hated and dreaded long past month and breakdown, Kinzie was still positive that she wanted/needed to stay home. I cringe sometimes wondering if the decision I make now will be the right decision leaving a positive lesson to be learned or a positive influence for my children.
This year in the public school system has been wonderful. It has given Kinzie back her confidence and taught her that she CAN…and she isn’t afraid to try anything once more. I think that in so valuable. Last year compared to this year has been complete polar opposites. Last year was a nightmare, this year has been such a blessing. I credit that to 1. a new and very understanding principal who is VERY much proactive when it comes to student safety. 2. a VERY loving and in-tune teacher who taught Kinzie so much more than just ‘school’. She let the light inside Kinzie grow once more and shine. She gave her control when possible and kept her safe. She let Kinzie feel love and secure. She gave us a great gift this year, which was just what Kinzie needed. 3. A nurse who is ever-learning. She always is open to learning. She makes changes when changes are needed. She is organized and communicated EVERYTHING. I love her.
I was saddened withdrawing Kinzie, but it needed to be done. The poor kiddo just needs to have a schedule that can be more flexible, stress free and where she can get some sleep whenever possible. Medical burnout at its finest dwelling inside her at the moment, and we just need to rise to meet her needs for the moment, flexibility with T1D is very much a necessity. Every teacher (librarian and nurse too) was overwhelmingly supportive and loving today, all sad to see Kinzie leave, but understanding her unique needs; every single one offering help, support, guidance, extra activities for her. How blessed have we been? How grateful am I? We are beyond lucky.
We have had so much support from friends in the home school community reach out and help me just get her out of the house. Letting us know of activities, etc. They are all so sweet, understanding and not once have said that they are too busy to help us start out. We love them, and are thankful for all of their help.
On top of it all, we have a wonderful loving, caring little 9-year-old boy who is battling a war with diabetes…not that he has it, but he too, hates it. He is worried about his sister and sees her current struggles and is feeling very helpless about it. He hates the time it takes from us and the focus it shifts off of him at times. He wishes it could leave (as we all do). But how blessed am I that he is vigilant and smart enough to articulate that in a very grown up way. These are ‘grown-up’ issues and he has to deal with them as well. He amazes me every single day. I love that guy so darn much, and every single day I am thankful for his health, heart, love, and smiling face. He lights my world up no matter how dark it may seem.
Needless to say we are in a tail spin of sorts. We aren’t loosing our footing, just finding a new part in the world of T1D. We are all experiencing new struggles and internal wars over it, but it is a very good thing we can communicate with each other about it. I have wise and strong children. I have a strong and amazing family…together I know we can do this. We are using skills we never thought we would, we are living through fears we never thought we would be faced with, and we are experiencing new things every single day that I would have never thought we would experience. But, for those of you finding yourself in similar situations, I am going to say the ever-dreaded words right now…IT COULD BE WORSE…because, well, it could. And it has. If you are able to relate in any way, and are in a tail spin…know that you can and will get through to the other side. There is always a solution. There is always a way. As much as I hate T1D, I know I cannot change it, so I look for the good; and every single time I look for the good in it, I can find it no matter how small it may be.
So when I think of control, and all the control we have lost in our lives, I am still thankful. I am still grateful. I am still optimistic. When I think of the control I have been given, I am even more thankful and grateful…without the control I do have, I would be one ball of nerves. When I think of sharing control…I think of working together for what is best for Kinzie. Everyone we allow in our life is willing to share control to an extent and responsibility. That is awesome. Not one person has turned their back or said it was too much to help with. I am currently working on ‘giving’ control. Haven’t even aced that task, but I am mindful of how important it is. I know I need to give it a little more…but baby steps. Noah didn’t build his ark overnight. It is all still in process, and I think it will always be ‘in process’ but control is something that comes up daily. Control is always there, whether we lose it, gain it, share it or grant it. Our trials are our trials alone, and what may be my mountain to me can appear to be only an ant hill to someone else. We are only granted what we can bear, or so I am told and believe to this day. Control, are you thankful for it, even when you cannot change what it is?