Wednesday, May 14, 2014
A D-State of Mind!
Day 3 of DBlogWeek and today's topic is-"What brings me down"
As a mother your worst fear is something happening to your children. All you want is for them to be happy, healthy and thrive in the world.
When your child is born completely healthy....all 10 fingers and toes, organs functioning perfectly and no health concerns, you breathe a sigh of relief.
For 3 1/2 years we had a healthy son (outside of the normal colds/illness) then one day out of the blue Type 1 Diabetes stole that away from us and more importantly HIM!
We now have to worry about our son's life, safety and health every single minute of every single day. It is mentally exhausting. The worry, stress, fear and lack of sleep take over your life. Will we be able to manage this disease well enough to prevent blindness, heart failure, kidney failure, death??? We are not a doctor or a nurse, yet we are solely responsible for managing an impossible disease. We make the decisions on how much insulin to give, we weigh his food and count his carbohydrates, we make the changes, we make the decisions! What other disease has to do that???? NONE! If he has a high or low blood sugar it is OUR fault, if he exercises too much and crashes it is OUR fault, if we don't count his carbohydrates correctly it is OUR fault! While we do the best that we possibly can and still allow him to be a "normal" kid, we are not a pancreas and we will never be able to get it right every single time.
We don't get to leave our son and get a break, the most we can be away is a few hours and we have to be attached to our phones because his status can change in an instant. One of us ALWAYS has to be available when he is at school to pick him up, answer questions etc. Diabetes never takes a break, it is there 24/7 for the rest of his life! As parents we will face many more obstacles and challenges than the average parents. What are we going to do when....Sleepovers- what will we do when he wants to stay the night at a friends house and the parents don't know anything about T1D? Driving- this scares me to death and we will have to teach him to check his BG before driving and always have low treatments easily accessible in case the need arises. School Field Trips- One of us will have to attend. Sports- extra steps and precautions will have to be taken to ensure his safety. Birthday Parties- we will have to be there to monitor his food and make sure he is given the extra insulin needed. Bullying- will he be picked on and targeted because he is different? School- we have to trust that the people at the school will be attentive to him, and take his disease seriously.
I am sure that I could make a laundry list of instances like this that we will have to face and manage, but I think you get the point ;)
We have to watch our son struggle and not feel well. We have to watch him grow up too quickly and be responsible for his health and cautious in the decisions that he makes. We have to watch him be in pain because he has to have injections, pump cannula's, cgm sensors, and finger pokes constantly. He will more than likely be hospitalized numerous times for blood sugars that we can not get under control. He is high risk for developing other autoimmune diseases. We have to watch our son battle the stereotypes that our society has on the word "diabetes", and he will have to learn to educate those around him, just as we have had to do and will continue to do.
I, as a parent have been forever changed by T1D. My brain works differently, and I now see the world differently. My heart has a dull ache that never goes away, and I wish daily that I could give him my pancreas and take on his T1D. I pray every day that a cure will come in his lifetime, so he can live carefree once again.
I wish this life upon no parent or child. Having a child with a chronic illness tears families and marriages apart. We have lost friends because we no longer have time to be social and they just don't "get" it. We are still fairly new to this life, so I can't speak to the long term effects that this disease will have on my mental health or my child's mental health but I can say this.....we have a long hard road in front of us! We will never stop fighting and we will continue to prove to J that this disease has only made him stronger and it will never keep him from achieving the life that he wants to live.
All we can do is hope and pray for the best, the rest is in God's hands!