Lately I have been struggling.....struggling as a mother and struggling with burying my feelings.
For the past 626 days I have been fighting, fighting to be strong and fighting to beat Type 1 Diabetes. It is my job as a mother to pick up the pieces and make everything better but since Joseph was diagnosed fate has dealt me an impossible card as a mother. There is no way for me to make this better, NO WAY IN HELL! I can't make it go away and I certainly can't control it.
I am not downplaying the fact that we are able to successfully manage Joseph's diabetes. We do an amazing job, but that is an over all picture. There are numerous times a day that we fail, and fail miserably. I am my son's pancreas.....how am I supposed to replace an organ in the body? There is no possible way that I can be as good as a healthy functioning pancreas, yet I am expected to be, to keep my child alive and to keep him healthy!
This takes it's toll on you emotionally and physically. I have watched myself lose sleep, health, patience and sanity to the point that I don't even recognize myself any longer. While I try my best to put on a happy face and pick up those pieces and move forward, I constantly struggle on the inside.
I see children playing soccer with Joseph and their parents watch them without a care in the world. Meanwhile, I sit there staring at a CGM trying to see what his blood sugar is doing and trying to predict what is going to happen next and prevent it from happening. I have to pull him off of the field to prevent a low blood sugar that is about to happen, forcing him to eat, and drink. While I want him to be a normal kid and play sports, it takes an extreme amount of work to make that happen. I find myself sitting in envy of those parents that get to fully enjoy watching their child play a sport, with no worry. I envy those children who get to play hard with no effects on their body. It doesn't just stop at sports, it is every situation, every single day!
I am sad and angry. I often sit and wish that I could just go back in time and change fate. I would give anything and everything to remove Type 1 Diabetes from our lives forever and go back to our old life.
I ask myself.......
How on earth am I going to do this for another 14 years until Joseph is an adult and on his own? How on earth am I going to feel when he is on his own and I can no longer make sure that he is caring for himself properly? How will I find the strength to keep pushing on? What am I going to do if Ethan develops Type 1 Diabetes?
I have hit a brick wall. This disease is going to be here FOREVER! Always lurking in the background and always stealing something from my child and my family. I feel like I am treading just enough water to barely keep my head out but I have something tugging on my ankles trying to drown my family. I read blogs and posts daily from other families and we are all feeling the same and battling the same demons.
How on earth do we all do it???
We have to keep on treading that water because we have no choice. Our children need us to take care of them, and need us to show them that nothing can or will stop them. However, I feel like I am teaching my son to just bury his feelings and keep moving forward because this is just something in life that he is going to be forced to cope with and manage.
I remind myself to be grateful for the discovery of insulin, although it is just his life support, it gives him life! I remind myself that they are making great strides in advancing the management of T1D and lowering the risks of long term complications!
I remind myself to keep the hope that we will have a cure, but I don't want to wait and hope. There are parents and diabetics that have been waiting and hoping their entire lives for a cure! So I force myself to stand up and do something about it. I am using my voice, sharing our story and trying my best to raise money to prove history wrong. I will not stop until my son has a cure and my family is free of Type 1 Diabetes once and for all. I am not judging those families that don't participate in raising money or advocating, I am just saying that I can't and won't sit back and wait and just hope for something to change.
Get up, Stand up and BE the change!
I am inspired and encouraged by the diabetes families that I have met. Without their constant support, I am not sure that I could keep pressing on, in the manner that I do. So thank you to those families and thank you to those who find refuge in my words. Just know that you are never alone and we are all feeling the same way and thinking the same thoughts. We are in this together and together we will beat diabetes once and for all!!!!