The Difference a Year Makes

We have had a long year. 2012 was by far one of the toughest years of my life.
Yet I can honestly say there is a certain beauty and clarity that came in the midst of our struggles. It has taken me a year to be ready to tell this story in words, to describe those first days and to record the emotions I felt when Emma, our six-year-old was diagnosed with type 1 diabetes. The day used to belong to just myself in our family, as I marked another year. Now every May third Emma and I will celebrate another year of survival and life together.We awoke early in the morning to get ready to take Emma to her pediatrician. Dale and I were both quiet and somber. We hadn’t slept well. Both of us were dreading the appointment. We both knew what the diagnosis would be but we also didn’t want to extinguish the last vestiges of hope that there might be something that could explain it all away. We have nurse friends who had already prepared us for what was to come. Her symptoms and the results of a urine test done the previous evening all pointed towards diabetes. Still, we couldn’t help but pray and plead and beg for a miracle.

We awoke early in the morning to get ready to take Emma to her pediatrician. Dale and I were both quiet and somber. We hadn’t slept well. Both of us were dreading the appointment. We both knew what the diagnosis would be but we also didn’t want to extinguish the last vestiges of hope that there might be something that could explain it all away. We have nurse friends who had already prepared us for what was to come. Her symptoms and the results of a urine test done the previous evening all pointed towards diabetes. Still, we couldn’t help but pray and plead and beg for a miracle. We waited in the doctor’s office. It didn’t take long to confirm what everybody seemed to already know. We were tearful and confused. I was scared and lost and shocked. I remember thinking for days afterward that it just seemed so random like a lightening strike or being run over by a semi truck. My phone kept alerting me to thoughtful birthday wishes from friends on Facebook all wishing me happiness and joy. Only a handful of people knew that we were actually living something akin to hell.

We waited in the doctor’s office. It didn’t take long to confirm what everybody seemed to already know. We were tearful and confused. I was scared and lost and shocked. I remember thinking for days afterward that it just seemed so random like a lightening strike or being run over by a semi truck. My phone kept alerting me to thoughtful birthday wishes from friends on Facebook all wishing me happiness and joy. Only a handful of people knew that we were actually living something akin to hell.We had to wait in the waiting room while the pediatrician got us in to see the endocrinologist. I remember thinking about how stricken we must have looked. There were other parents waiting with their children. The doctor spoke to us so kindly, gave us condolences and asked that we keep them informed. I was thinking about what the other parents were thinking. As a parent when you see or hear of the illness of another child you breathe a prayer and hug your kids a little tighter. Today we were the catalyst for all of that in the parents around us in that waiting room.

We had to wait in the waiting room while the pediatrician got us in to see the endocrinologist. I remember thinking about how stricken we must have looked. There were other parents waiting with their children. The doctor spoke to us so kindly, gave us condolences and asked that we keep them informed. I was thinking about what the other parents were thinking. As a parent when you see or hear of the illness of another child you breathe a prayer and hug your kids a little tighter. Today we were the catalyst for all of that in the parents around us in that waiting room.We made our way to a part of Shands we were unfamiliar with. We were just too shocked, too overwhelmed with fear and questions and grief to do anything but put one foot in front of the other. That day we spent hours talking to new doctors and nurses. And even in those moments of utter loss, God was still taking care of us. Our wonderful nurse who seemed to just love Emma instantly, who was not supposed to be our nurse that day was just one of the ways that God was loving us through this heartbreaking event. After conversations about A1C’s, Blood glucose, and ketones, Shannon told Emma that she too was diabetic and had been to many of the places that we had been, including Guatemala where our family had visited just six months before. Here was a ray of life. She told Emma that she could do anything she wanted too, that diabetes would not keep her from a full life.

We made our way to a part of Shands we were unfamiliar with. We were just too shocked, too overwhelmed with fear and questions and grief to do anything but put one foot in front of the other. That day we spent hours talking to new doctors and nurses. And even in those moments of utter loss, God was still taking care of us. Our wonderful nurse who seemed to just love Emma instantly, who was not supposed to be our nurse that day was just one of the ways that God was loving us through this heartbreaking event. After conversations about A1C’s, Blood glucose, and ketones, Shannon told Emma that she too was diabetic and had been to many of the places that we had been, including Guatemala where our family had visited just six months before. Here was a ray of life. She told Emma that she could do anything she wanted too, that diabetes would not keep her from a full life.There are a few things that stand out more than others in that day. The first being that we were very close to losing Emma. Her numbers were so high, she was passing large ketones- this had been going on for months now. We had noticed the changes in her but didn’t understand why. We were watching her but thought maybe it was a growth spurt, that she was growing up, more active, a phase. I didn’t want to be the hypochondriac mom that was googling things, making myself crazy. But a dear friend said the words that were running through my head. I had kept pushing the word diabetic away from my thoughts for a couple of weeks. I had been trying to explain other reasons for her increased thirst and hunger. My friend Tracy, another gift from God, helped me to know that I couldn’t ignore it any longer. Tracy is also a nurse and I had noticed Emma had a yeast infection the day before. I mentioned it and the other stuff to Tracy and she said another friend’s child had been diagnosed with diabetes With the same symptoms. And there it was. The word was out. The word I had been not letting myself say had just been said out loud. I called her pediatrician. If we hadn’t been out of town, they would have seen her that afternoon. I had a day of utter anxiety. I called and texted Dale, a few friends, and my mom- looking for comfort, prayers. And because of all of this waiting, hesitation, I now sat in the doctor’s office feeling a load of guilt and remorse. I had been watching my precious daughter slowly starve to death and struggle with the emotional and physical toll of this disease. We had been correcting and disciplining her mood swings and questioning her need to eat and drink so much. I had been thinking about the beautiful young lady she was becoming, losing the little kid weight, growing up. She was starving, dying in front of me and I couldn’t or didn’t protect her. They said that if we had not come that day, they would have seen us in the emergency room by the weekend. Every time I think about that, it scares me to realize that we were so close to losing her. To experiencing what some parents experience when their child collapses or becomes so sick that they are hospitalized. I am so thankful that God graciously spared us that. It took grace and some time to forgive myself for not understanding what was happening.

There are a few things that stand out more than others in that day. The first being that we were very close to losing Emma. Her numbers were so high, she was passing large ketones- this had been going on for months now. We had noticed the changes in her but didn’t understand why. We were watching her but thought maybe it was a growth spurt, that she was growing up, more active, a phase. I didn’t want to be the hypochondriac mom that was googling things, making myself crazy. But a dear friend said the words that were running through my head. I had kept pushing the word diabetic away from my thoughts for a couple of weeks. I had been trying to explain other reasons for her increased thirst and hunger. My friend Tracy, another gift from God, helped me to know that I couldn’t ignore it any longer. Tracy is also a nurse and I had noticed Emma had a yeast infection the day before. I mentioned it and the other stuff to Tracy and she said another friend’s child had been diagnosed with diabetes With the same symptoms. And there it was. The word was out. The word I had been not letting myself say had just been said out loud. I called her pediatrician. If we hadn’t been out of town, they would have seen her that afternoon. I had a day of utter anxiety. I called and texted Dale, a few friends, and my mom- looking for comfort, prayers. And because of all of this waiting, hesitation, I now sat in the doctor’s office feeling a load of guilt and remorse. I had been watching my precious daughter slowly starve to death and struggle with the emotional and physical toll of this disease. We had been correcting and disciplining her mood swings and questioning her need to eat and drink so much. I had been thinking about the beautiful young lady she was becoming, losing the little kid weight, growing up. She was starving, dying in front of me and I couldn’t or didn’t protect her. They said that if we had not come that day, they would have seen us in the emergency room by the weekend. Every time I think about that, it scares me to realize that we were so close to losing her. To experiencing what some parents experience when their child collapses or becomes so sick that they are hospitalized. I am so thankful that God graciously spared us that. It took grace and some time to forgive myself for not understanding what was happening.We took Emma to lunch and tried to explain what had just happened. Several blood tests and her first shot of insulin was so much for all of us. I remember us trying to explain to her that this wasn’t something we took medicine for and it would be cured or fixed. We had to tell our six-year-old that this would be for the rest of her life. We went back to the doctor’s office for more training, education on our new life. At one moment I remember thinking for the first of many times how surreal the whole situation was. I remember thinking, is this really happening to us? Are we really doing this? In my hand was a syringe. I was being taught how to roll and draw up insulin, how to mix Humalog and NPH. I was being taught how to give my daughter a shot. I was having to give myself a shot so that I would know I wasn’t hurting her. (It hurt a lot.) Our insurance wasn’t going to cover our $1000.00 pharmacy bill. There were schedules for eating, insulin that peaks, meters, lows, highs, ketones, carbs, snacks, lancets, testing sites, injection sites- I looked at Emma and just wanted to snatch her up and run away. I wanted to just hold her tight and leave it all behind.

We took Emma to lunch and tried to explain what had just happened. Several blood tests and her first shot of insulin was so much for all of us. I remember us trying to explain to her that this wasn’t something we took medicine for and it would be cured or fixed. We had to tell our six-year-old that this would be for the rest of her life. We went back to the doctor’s office for more training, education on our new life. At one moment I remember thinking for the first of many times how surreal the whole situation was. I remember thinking, is this really happening to us? Are we really doing this? In my hand was a syringe. I was being taught how to roll and draw up insulin, how to mix Humalog and NPH. I was being taught how to give my daughter a shot. I was having to give myself a shot so that I would know I wasn’t hurting her. (It hurt a lot.) Our insurance wasn’t going to cover our $1000.00 pharmacy bill. There were schedules for eating, insulin that peaks, meters, lows, highs, ketones, carbs, snacks, lancets, testing sites, injection sites- I looked at Emma and just wanted to snatch her up and run away. I wanted to just hold her tight and leave it all behind.And then they sent us home. Home with a head full of knowledge that I really didn’t have a handle on. A book, some phone numbers and two vials of insulin, a meter, some needles and the task of keeping Emma alive for another night. I felt so clumsy and lost and scared. We had gone to dinner with my family for my birthday. We were all physically and emotionally spent. We were all just hanging in the limbo of shock, grief and the unknown. What did this mean for us? How were all of the details going to work out? And at my core, could I do this? But I remember God coming to me in the night as I lay awake, my thoughts just churning. He began showing me how He had been at work in the situation, at work in me the years and months leading up to Emma’s diagnosis. It was so encouraging, gave me such comfort to know that even in such a dark hour, God was loving me and caring for me and my family.

And then they sent us home. Home with a head full of knowledge that I really didn’t have a handle on. A book, some phone numbers and two vials of insulin, a meter, some needles and the task of keeping Emma alive for another night. I felt so clumsy and lost and scared. We had gone to dinner with my family for my birthday. We were all physically and emotionally spent. We were all just hanging in the limbo of shock, grief and the unknown. What did this mean for us? How were all of the details going to work out? And at my core, could I do this? But I remember God coming to me in the night as I lay awake, my thoughts just churning. He began showing me how He had been at work in the situation, at work in me the years and months leading up to Emma’s diagnosis. It was so encouraging, gave me such comfort to know that even in such a dark hour, God was loving me and caring for me and my family.We returned the next day for more education, both girls with us this time. I remember trying to wrap my head around it all, trust in God, breathe and love on my girls. So many people loved on us those first few days. So many people took care of us, provided and helped us with supplies, We returned the next day for more education, both girls with us this time. I remember trying to wrap my head around it all, trust in God, breathe and love on my girls. So many people loved on us those first few days. So many people took care of us, provided and helped us with supplies, prayers, and kind words. Sometimes people say things, good and bad that stick with you for a long time. I remember my friend Keryn texting me that she just wanted to give us all a hug. That just seemed like the sweetest expression of caring and something that ministered so deeply to me at that moment.

Those next few days held tears, anger, sadness and humbling love. Saturday morning as I gave Emma a shot, it hurt her, she cried and I laid my head down and cried right along with her, sobbing my apologies to her. It left a large bruise on her arm. Later she told everyone that it wasn’t my fault but the shot’s fault. That kid just blew me away with her graceful acceptance and compose, with her ability to love me through her suffering. Our church and several friends from other churches came and prayed over us. I felt so loved and so unworthy to be cared for in such a way. I can remember gaining perspective about life, the importance of forgiveness and understanding of grace in the moment, not thinking so far ahead that I began to drown.

Our first year has been filled with so many ups and downs. There have been so many instances of God redeeming this in our lives with new friends, miraculous provision, and a compassion and understanding that I would have never learned without this experience. I have seen and learned some things about myself that weren’t always beautiful- struggles with self-pity, entitlement, selfishness and pride. I’ve noticed that even now, our family is still struggling and trying to really absorb what has happened to us. Diabetes affects all of our family not just Emma. Realizing that we each have tried to deal with our new normal and that a year later we are just starting to deal with certain aspects of this diagnosis. We hit the ground running and became a nurse, caretaker, 24/7. Only now are we starting to see the past year in reflection and truly deal with what’s happened. Our journey is just beginning and there will be so many more ups and downs along the way. Sometimes this has felt like the longest year of my life. Sometimes I think it all just looks like a blur of numbers and doses and frustrations. But I know that I am so very thankful this year. I am thankful and at peace. I know that I am a different person and that this past has been a catalyst, boot camp and crash course all in one. There is a hope and a thankfulness each day that I might not have had before. There are many things I took for granted and struggled to understand that are a little clearer now. We aren’t there yet, God isn’t finished with us and I don’t know what’s in our future. But I know that we aren’t alone and that we never will be. Thank you to those that have loved us, prayed for us, listened and cared for us. Thank you to those that have learned about diabetes, loved on my girls and cared for them so that we could still do some of what we were called to do. Thank you for a fabulous medical team, for CMS who helps us take care of Emma. Thank you to our new friends who help us feel normal and not alone. Thank you, God for the medicines and technology, for researchers and advocates, for being able to live in a place where my child could receive care and live. Thank you, God, for loving us so much that you gave us all these things and that you cared for me and for Emma even when I know we don’t deserve any of it. Thank you, God, for the gospel that has made this last year a story of redemption, about your love for us and not a meaningless tragedy. You are a good God and always will be.
Thank you all so much. We love you.

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