T1 Family: 5 Years
Five Years. Five ridiculously long years that at the same time have gone by in the blink of an eye. I remember that night...five years ago. The night our world shattered. I remember holding you in the emergency room while your sweet little body was violated in ways that would become your normal. I remember the absolute terror I felt thinking about your future. I remember the black that followed. The guilt I felt over that black. We had just had dear friends loose their precious little boy forever to cancer, you see. So, what possible right did I have to experience such absolute devastation over this? I remember holding you down while you screamed for those first shots. You have to know without doubt that your dad and I tried absolutely everything we could think of to avoid having to hold you down. But we, above all else, had to keep you alive. And, when games and bribery didn't work, we had to hold your little body down even though it killed us. I remember the day you stopped screaming. The day you went back to school, less than a week after diagnosis, and read a book to your class about diabetes. I remember the note you wrote me two days after you were diagnosed:" I'm really glad your my mommy. When can we go ice skating again? I bet I'll be really good." You saved me. You were ok long before I was. And, your strength gave me strength. What resilience children have. You became my hero.
Watching your child hurt, and being powerless to protect them. This is devastating. As your mom, my job was to protect you. And, I couldn't. Like so many other moms I know I have looked back. I know there is no point. I know rationally it is not my fault. But, that doesn't stop the thoughts...I know now I had undiagnosed celiac during my pregnancy with you...did this contribute? I put you in daycare when you were six months old...was this where you caught a virus that could have caused it? And, now...new theories that weren't around twelve years ago...I gave you gluten in your first year of life...this could have caused it. I know these thoughts are futile. Ridiculous. Pointless. They rarely enter my conscious now. But, tucked away, they are still there. And, I'm sorry. I am so sorry that I could not protect you.
Five years. Why did this anniversary bother me more than any other since the first? I was so relieved to go to bed that night. So glad the day was done.
Maybe it is because it has been five years and there is still no end in sight. Five years ago, I was still naive enough to believe a cure was coming soon. I still have hope it will come, but I now know that "five or ten years" is a joke in the diabetes community. They've been promised a cure in "five to ten years" for decades. Maybe it is because now that you have had diabetes five years, I feel this time bomb ticking louder....complications....more than anything else time allows complications. You will have had diabetes ten years by the time you are seventeen. I panic when I even think about that. I know that luck has so much to do with developing complications. I have seen people who have worked so hard still get them. You will have had diabetes twenty years when you are only twenty-seven. Twenty-seven. I was newly married, hadn't even finished my medical training. And, by that time you will have had it twenty long years. And, perhaps the scarier part is that the days that I have any control over the one thing that could prevent or delay those complications is marching closer. You will likely leave my house in six years. Already, I am losing control over helping you to manage your blood sugars. And, I should be. As much as I wish it wasn't, this is yours. And, to succeed at all you must own it. Gone are the days when I could feed you your precisely measured meals and have the luxury of you wearing the dexcom 24/7. These days are about compromise, and fighting the effects of hormones. They are about you becoming the young adult that you will be. And, you will be an amazing one.
Five years. Five years of sleepless nights. Guilt for feeling anger as yet another night is interrupted by beeping machines that intrude into much needed slumber. Guilt for having days that I am just tired of it all. And, what right do I have when you must live with it forever? Five years of explaining to people who don't get it. Five years of hearing upsetting comments that aren't meant to be. Five years of refraining from screaming at yet another person who stares at your pump or dexcom, or asks "what is that thing on your arm?" And, yet five years is just a drop in the bucket compared to the journey you must take.
I hate it. I wish I could take it for you. It is not fair. You did nothing to deserve this.
But, you are going to be ok. And, because of that I, too, am going to be ok.
For every single negative that diabetes has brought, there have been so many absolutely amazing positives. It has changed you. You are the person you are because of it. Your strength astounds me. Your empathy amazes me. It has connected us to a community that we otherwise would never have met. A community that envelops us and supports us. A community filled with super-hero children with type 1, and their un-sung hero siblings. A community of adults with Type 1 that show me that you will be ok. Yes, you may struggle. Yes, you may get complications. But, you will have support. And, that support will carry you. You have friends in Texas, Wisconsin, California...and you support each other. You would never have them if not for diabetes. You have saved your dad. He was alone and because of you he is not alone anymore. He has found what he was always searching for. And, because of that, I know he, too, will be ok. Your journey has led us to work that we never would have done otherwise. Important work. Work that needs to be done.
And, better times are near. The Bionic Pancreas will change your life. Yes, you will still have to wear so many things attached to your perfect little body. You will still have the pinholes and skin breakdown. But, the emotionally exhausting part---the thinking about diabetes every single moment of every single day....it will go away. An amazing man with an amazing team is developing an amazing little computer that will do this for you. And, he too is my hero.
And other amazing concepts like encapsulation...they may be a reality.
So, five years. Five years since diabetes came to live with you. You've lived well. You've traveled across the country, hiked mountains, rafted down rivers, rode across deserts on horses. You've left behind the elementary years and are thriving in middle school. You are exactly where you are supposed to be despite diabetes. You have thrived. Five years, and I couldn't possibly be more proud of you.
TraceyOctober 9, 2014 at 8:40 PMThank you for sharing all these feelings, Tamara. My sister was just about Jessica's age when she was diagnosed, and it's so easy to recall HER journey from then until now by reading your words. You are exactly right...Jessica is going to be ok. I see my sister, the beautiful, brilliant woman that she is, and diabetes is the last thing I think of when I think of her. It doesn't define her, it's just part of her. We are wishing for the cure too. XOXOReplyDeletek2October 13, 2014 at 2:12 PMI LOVE you all so very much. Jessica is going to be OK - more than OK - She's going to soar! XoxoReplyDeleteKellyOctober 13, 2014 at 6:45 PM((HUGS)) Beautifully written! I have all the same feelings still to this day, we are at almost 8 years of Diabetes.-Sigh- Sure is a BEAUTIFUL young lady you have there! ReplyDeleteAdd commentLoad more...
T1 Family: 5 Years
Five Years. Five ridiculously long years that at the same time have gone by in the blink of an eye. I remember that night...five years ago. The night our world shattered. I remember holding you in the emergency room while your sweet little body was violated in ways that would become your normal. I remember the absolute terror I felt thinking about your future. I remember the black that followed. The guilt I felt over that black. We had just had dear friends loose their precious little boy forever to cancer, you see. So, what possible right did I have to experience such absolute devastation over this? I remember holding you down while you screamed for those first shots. You have to know without doubt that your dad and I tried absolutely everything we could think of to avoid having to hold you down. But we, above all else, had to keep you alive. And, when games and bribery didn't work, we had to hold your little body down even though it killed us. I remember the day you stopped screaming. The day you went back to school, less than a week after diagnosis, and read a book to your class about diabetes. I remember the note you wrote me two days after you were diagnosed:" I'm really glad your my mommy. When can we go ice skating again? I bet I'll be really good." You saved me. You were ok long before I was. And, your strength gave me strength. What resilience children have. You became my hero.
Watching your child hurt, and being powerless to protect them. This is devastating. As your mom, my job was to protect you. And, I couldn't. Like so many other moms I know I have looked back. I know there is no point. I know rationally it is not my fault. But, that doesn't stop the thoughts...I know now I had undiagnosed celiac during my pregnancy with you...did this contribute? I put you in daycare when you were six months old...was this where you caught a virus that could have caused it? And, now...new theories that weren't around twelve years ago...I gave you gluten in your first year of life...this could have caused it. I know these thoughts are futile. Ridiculous. Pointless. They rarely enter my conscious now. But, tucked away, they are still there. And, I'm sorry. I am so sorry that I could not protect you.
Five years. Why did this anniversary bother me more than any other since the first? I was so relieved to go to bed that night. So glad the day was done.
Maybe it is because it has been five years and there is still no end in sight. Five years ago, I was still naive enough to believe a cure was coming soon. I still have hope it will come, but I now know that "five or ten years" is a joke in the diabetes community. They've been promised a cure in "five to ten years" for decades. Maybe it is because now that you have had diabetes five years, I feel this time bomb ticking louder....complications....more than anything else time allows complications. You will have had diabetes ten years by the time you are seventeen. I panic when I even think about that. I know that luck has so much to do with developing complications. I have seen people who have worked so hard still get them. You will have had diabetes twenty years when you are only twenty-seven. Twenty-seven. I was newly married, hadn't even finished my medical training. And, by that time you will have had it twenty long years. And, perhaps the scarier part is that the days that I have any control over the one thing that could prevent or delay those complications is marching closer. You will likely leave my house in six years. Already, I am losing control over helping you to manage your blood sugars. And, I should be. As much as I wish it wasn't, this is yours. And, to succeed at all you must own it. Gone are the days when I could feed you your precisely measured meals and have the luxury of you wea
ring the dexcom 24/7. These days are about compromise, and fighting the effects of hormones. They are about you becoming the young adult that you will be. And, you will be an amazing one.
Five years. Five years of sleepless nights. Guilt for feeling anger as yet another night is interrupted by beeping machines that intrude into much needed slumber. Guilt for having days that I am just tired of it all. And, what right do I have when you must live with it forever? Five years of explaining to people who don't get it. Five years of hearing upsetting comments that aren't meant to be. Five years of refraining from screaming at yet another person who stares at your pump or dexcom, or asks "what is that thing on your arm?" And, yet five years is just a drop in the bucket compared to the journey you must take.
I hate it. I wish I could take it for you. It is not fair. You did nothing to deserve this.
But, you are going to be ok. And, because of that I, too, am going to be ok.
For every single negative that diabetes has brought, there have been so many absolutely amazing positives. It has changed you. You are the person you are because of it. Your strength astounds me. Your empathy amazes me. It has connected us to a community that we otherwise would never have met. A community that envelops us and supports us. A community filled with super-hero children with type 1, and their un-sung hero siblings. A community of adults with Type 1 that show me that you will be ok. Yes, you may struggle. Yes, you may get complications. But, you will have support. And, that support will carry you. You have friends in Texas, Wisconsin, California...and you support each other. You would never have them if not for diabetes. You have saved your dad. He was alone and because of you he is not alone anymore. He has found what he was always searching for. And, because of that, I know he, too, will be ok. Your journey has led us to work that we never would have done otherwise. Important work. Work that needs to be done.
And, better times are near. The Bionic Pancreas will change your life. Yes, you will still have to wear so many things attached to your perfect little body. You will still have the pinholes and skin breakdown. But, the emotionally exhausting part---the thinking about diabetes every single moment of every single day....it will go away. An amazing man with an amazing team is developing an amazing little computer that will do this for you. And, he too is my hero.
And other amazing concepts like encapsulation...they may be a reality.
So, five years. Five years since diabetes came to live with you. You've lived well. You've traveled across the country, hiked mountains, rafted down rivers, rode across deserts on horses. You've left behind the elementary years and are thriving in middle school. You are exactly where you are supposed to be despite diabetes. You have thrived. Five years, and I couldn't possibly be more proud of you.
TraceyOctober 9, 2014 at 8:40 PMThank you for sharing all these feelings, Tamara. My sister was just about Jessica's age when she was diagnosed, and it's so easy to recall HER journey from then until now by reading your words. You are exactly right...Jessica is going to be ok. I see my sister, the beautiful, brilliant woman that she is, and diabetes is the last thing I think of when I think of her. It doesn't define her, it's just part of her. We are wishing for the cure too. XOXOReplyDeletek2October 13, 2014 at 2:12 PMI LOVE you all so very much. Jessica is going to be OK - more than OK - She's going to soar! XoxoReplyDeleteKellyOctober 13, 2014 at 6:45 PM((HUGS)) Beautifully written! I have all the same feelings still to this day, we are at almost 8 years of Diabetes.-Sigh- Sure is a BEAUTIFUL young lady you have there! ReplyDeleteAdd commentLoad more...