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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God’s Generous Grace and Emma

I have two beautiful daughters that I love so much. My oldest is Grace. She is unique and wonderful in so many ways. God often uses her to teach me about himself and unfortunately myself as well. However, this story is about my younger daughter, Emma and how she has been at the center of God’s generous grace in my life.

  Emma is 7 and she is an amazing kid. She has these big brown eyes that she uses to make the best expressions. She has a quirky, dry sense of humor and delivers one-liners in a matter of fact way. She is very funny. She is intelligent. We often think she is evil genius smart. She looks at life differently and chooses to make her own way. She doesn’t ride the waves of life but parts them and makes waves of her own. She walks around with her hand on her hip and uses her hands to express her ideas. She is fiercely loyal and devoted. If you are lucky enough to be loved by Emma, then you are truly loved. Emma has been a joy and a challenge to parent. Emma also has type 1 diabetes.
  Over the last eight months since Emma’s diagnosis, I can recount many examples of God’s grace, God’s provision and God’s protection demonstrated in the life of our family. But recently God has been using this horrible situation to redeem an area of my life that has been in desperate need of the gospel. My life has been transformed through this process. I have taken on the role of a nurse and constant caregiver to Emma. While I love my daughter and care for her willingly, it is not a role I feel qualified for or capable of sometimes. The responsibility and weight of my decisions and attentiveness to her is often overwhelming and exhausting.  I often feel that I am responsible for her very survival. And while I am responsible for her care, ultimately God is sovereign over Emma’s life and it is in His purview to sustain her. In my love for her and also my foolishness and ultimate arrogance, I have forgotten this. I have tried to take on a job that was not intended for me and that was too big for me to manage. The weight has been crushing me.
    Diabetes, I am learning, isn’t always a predictable disease. It is full of variables, differing ratios, timetables and other factors that can change how I treat Emma. It is a lot of mental figuring, measuring, calculating, planning and judgment calls which could mean a normal blood glucose for Emma or one of two perilous extremes. The high blood sugars bother me. Besides the fact that Emma can be irrational, emotional and hard to manage during these times, I am thinking about the damage being done to her body by these high blood sugars. But honestly, it is the lows that scare me. And specifically, the ones that happen at night when I not at my most vigilant. It is hard to sleep while the fear of finding your daughter unresponsive in the morning looms in the back or front of my mind.  Often my husband and I will have to set an alarm to check her at two am. If she is low then we have to get her up to drink some juice or eat some candy, wait to ensure her blood glucose is up and then get our sleeping child to eat a snack.(Emma often has some of the same symptoms of being high but with lethargy and tingling extremities. Sometimes she doesn’t hear me. And I have to be very firm in order to get her let me treat her.) It becomes increasingly difficult to wake night after night and have your sleep interrupted. It affects all areas of your life. There have been several nights where I have slept through the alarm or have been so disoriented that I cannot remember whether I have checked Emma or not. I often make mistakes with her care- miscalculations, misfiguring or even forgetting her meter and insulin a few times when I am awake. And I punish myself and berate myself for my carelessness. The stakes are just too high in my mind for me to allow those kinds of mistakes.
  But God has slowly been using these moments to apply the gospel to my heart. Last night I didn’t plan to check Emma at 2. I checked her before bed and she’d had a snack and no more insulin. At three a.m. I awoke and thought of Emma but decided she would be ok. I was very tired and still half asleep. I dozed back off and awoke again at four. I wrestled with the idea of getting up but instead tried to run her numbers and the logic in my head. I didn’t want to get up and I didn’t want to disturb her sleep if I didn’t have to. But I felt bothered. I prayed that if Emma needed me, that God would wake me. It was the kind of prayer that Paul describes as our uttering and groaning, that the spirit understands and he makes intercession based on what he knows we need. At five a.m. I was abruptly woken from a sound sleep and a dream. I jumped out of bed, grabbed a meter from the kitchen and made my way to Emma’s room. I quickly set everything up and had to rouse Emma so she wouldn’t move her hand away. The number was 55. Anything under 70 is low. I woke Emma to get her to drink some juice. I had to fix her a snack and recheck her. As I was waiting I began to think about the fact that had I not awoken and checked her, it would have been several hours before I would have checked her when she woke up. I didn’t want to think about what would have happened if her blood glucose had continued to drop unchecked for that long. I waited and rechecked Emma. Her level had actually gone down. I started to feel fear creep up on me. All I could think was that I would need to wake Dale and we would need to grab both of our children and head to Gainesville to the pediatric emergency room. A steadying voice urged me to check again. Finally, she was rising, slower than normal but her blood glucose was rising. I got her to eat and drink and got her back into my bed. There was no way I was letting her out of my arms for the rest of the night. I rechecked her for the fourth time and she was back into the 70’s, still low but hopefully moving up after she digested the snack.
I walked back into the kitchen to put the meter away and just slipped to the floor, completely broken and overwhelmed by the near crisis that happens too often at our house as we deal with diabetes. I had been looking back over her numbers, the doses, the carbs, my choices. I was looking for my mistake. I was blaming myself and berating myself for not checking and for delaying so long. But it was too much. I just wept and prayed out my fears of being inadequate and a failure to my poor child. I just let my frustrations and sadness come free. And then floating through my thoughts, clear and distinct was the unsolicited prayer of a friend at small group the night before. I wasn’t in the prayer requests spoken during the group but nevertheless, here was Kim praying for my strength and for grace as Emma’s mother and her nurse. It was so clear and beautiful as in that moment God revealed his grace and provision by prompting another to uphold me in prayer, by answering my semi-conscious groans for grace, by sovereignly bringing me to alertness when Emma needed me most.
  God has been trying desperately for years to dismantle the lies that permeate my being telling me I am not good enough. He has been gently and beautifully showing me that He loves me and that his love and grace are always available to me, completely independent of my mistakes, failures, successes and accomplishments. He is showing me his love and care of Emma by using extraordinary methods to provide for her. God is so generous with his grace. He does not withhold it out of tough love. He does not pull it away when I seek solace in my own fallible efforts instead of relying on his unfailing grace.
I texted my friend the next morning to thank her and tell her that her prayers were used by God to get me through a very difficult experience. She was surprised and delighted. She hadn’t planned to pray for me but it had just come forth as a prompting from the spirit. God is amazing. The fingerprints of his grace and mercy sometimes can only be truly seen by looking backward as His gracious care for us is revealed through eyes that have been opened to his handiwork.
   Continue to open my eyes Father. Continue to show me your grace and help me to fully trust and know your love for me. Amen.
Amen.
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