As I sit down to blog tonight, I am in tears. Tears of hurt, fear and frustration. The last two days for me have been hard. I have lived with type 1 diabetes now for 2 years with my oldest son and 2 months with my baby girl. But I have never had the experience of actually being a type 1 diabetic.
It started yesterday with taking the T1D4ADAY, a challenge by the JDRF, sending texts for 24 hours explaining this disease. I took the challenge, but seriously figured what could it possibly teach me that I didn’t already know. I get this disease, I really do. I do it non stop.
Well, after texts all day while trying to work, enjoy our company Thanksgiving luncheon, going to an appointment after work. I realized a lot of things. I realized, I really don’t know what it’s like to not be able to eat what I want, when I want, without carefully measuring every bite or sip that goes in my mouth…I realized that when my kids aren’t with me I can forget all the life saving meds, supplies and snacks. But my phone kept telling me I needed these things and my babies weren’t even with me. I realized I really have no idea what my 4 year old and 1 year old go through. Every time they want to eat, it’s stopping them first, checking fingers, dosing insulin, changing pumps, giving injections. Doing corrections. Waking them all hours of the morning and force feeding to treat lows. I just do it, after all it needs done. Their lives depend on it.
I really have no idea what it’s like to do this myself. These texts opened my eyes. Opened my eyes hard to exactly what this will be like for them when I’m not the one doing it all for them. It saddened me. This isn’t what I want for them. For anyone. This challenge made me put myself in their shoes…it really shattered my heart for anyone lives with this daily. The constant monitoring, measuring everything you eat, all activity you do, stress in their lives, even season changes need to be accounted for. My body produces insulin and the exact amount when needed, all factors considered. It is an exact science and works perfectly. Here I am just an external pancreas trying to take all these factors in and provide my children with the tools necessary to keep them alive and healthy. Sometimes we hit it exactly, other times we can’t get it right, no matter how hard we try. Sometimes, there is just not an explanation. It’s frustrating to me. But yesterday, I realized how frustrating it must really be for them. I can’t begin to imagine living with this disease myself. Even though I live it every day, 24/7 nonstop for them. What an eye opening experience. I even had some dear non type 1 friends take the challenge. I so enjoyed their texts and communications saying they just can’t imagine what we deal with day in and day out. But after the day, I feel the same. I just can’t imagine and I really try. I would do anything to take this from them and carry this burden, ANYTHING!!!!
Today was a new day, my texts stopped at 3:30am. I went back to normal. Left overs were put out at work and I went back to eating and grazing all day, never giving it a single thought that my babies can’t and won’t be able to do this. I spent my day at work, away from diabetes for alittle while anyways. I went home and picked up Darryn for his routine 3 month appointment. That dreaded day that I take him for his A1c test. They draw blood every 3 months. When he was diagnosed at 2 years old it was alittle easier as he wouldn’t throw such a fit. He’s now 4 and he totally gets it.
We pull up and he says, “Hey, I stayed here before and this isn’t Walmart.” My response, “Yes, sweetie you are correct, it isn’t.” Immediately walking in he starts. I don’t want this, they aren’t taking my blood. See, he gets this, he knows what happens next….and so do I. The older he gets the harder this seems to get. I register him, he continues to play with his train and repeating to himself he won’t do this. They won’t take all his blood. We get called back to the lab, he throws himself on the floor, he throws a royal fit. I’m positive at this point everyone in the waiting room and the employees think I’m the worst mom in the world. Why can’t she control him, what is his problem….I see it, I get it. I’m just as embarrassed. I have been here before, so has he. I finally drag him back to the lab and fight him to get on my lap. He starts kicking, he kicks the nurse and myself till I lock his legs into mine. Immediately before I’m ready he throws his head back into mine and hits my nose. So, I grab his head and other arm and lock them as well. The one nurse has his arm they are pulling blood from, the other nurse is preparing to take his blood. Tears start to stream down his face. I hold mine back, after all I am the strong one here. And I have to be for him. I am for him!! They pull blood to fill the tubes, I watch tears stream down his face, as I do every 3 months. But when he is done, he jumps off my lap and proceeds to tell me I am a mean, mean person. That he doesn’t love me anymore. I hear this over and over again. It stings! It hurts! Its real! For him and for me! I remain strong, I fight him another time to get his coat on, he refuses. I actually have to start leaving without him to get him to follow. It hurts because I just want to hug him and give him love. He finally comes outside with me and proceeds to our vehicle telling me I am so mean and his Daddy never does this to him. That I am the only mean one. It cuts deep. I get him into his car seat proceed to get in and drive away. I can’t take it anymore, I start to cry myself. I figure it’s dark, he can’t see. He hears me, he asks me repeatedly why I’m crying. It takes awhile to gather my words…we talk on the way home, both of us crying. Here I am, not a diabetic, trying to reason with and explain to a 4 year old why these tests are so important, why we do so many of them. I go on and on, I try to explain to him how I would take this away in a heartbeat, that I would do it for him, in an absolute millisecond!! No matter the wording I use, he really doesn’t get it. And that hurts me even more…why should a 4 year old have to get this?? Something so adult like, he shouldn’t have to get it. Hell, I shouldn’t have to be explaining it to him. We get home and life goes on for him. He’s happy. Mom is sad. Heartbroken, saddened and just trying to make sense of it all. That’s one thing I will never get, I can’t make sense of it.
I love my children with all my heart and I am a strong woman, they are strong kids, but I realized in the last two days that we all have breaking points….we all have weak moments…and it’s ok. I am beyond thankful for the friends and family that lifted me up the last two days and reassured me I am doing all I can. We are thankful in this beautiful month of November (the month of thanks) but I won’t deny these last two days just have me in a hurt and weak state. There are moments I think everyone needs a break from life…unfortunately, the D monster doesn’t know a vacation, a break or even a good nights sleep.
So, what have I realized in the last two days…my babies are strong, they are brave, they are courageous…they have and will continue to teach me so much. It’s hard to realize they have to grow up so quickly, they take on more than they should…but one promise I can make and absolutely keep for all the type 1 diabetics out there I won’t stop till there is a cure. HOPE. BELIEVE. FAITH.
Tomorrow is a brand new day, I will release blue balloons for all those that have fallen to this disease and all the “sweets” still fighting, for all the parents and care takers…we will release balloons for us all<3