Just in time for the holiday festivities, "flu-mageddon" invaded the Randall house this week with Paul and Luna both sick. Forcing us all to slow down and leaving me to nurse them back to health all while doing everything I can to avoid catching it. Awesome! And while we didn’t have the most productive week of the year, it did provide me with a lot of time to reflect. As clichè as it sounds, the holidays provide a perfect backdrop for reflection. This year my thoughts are ever consuming, as it was around this time last year things with Luna began to change.
My holiday mind is riddled with memories of Luna using the restroom frequently and drinking excessive amounts of water. These memories drive me insane, but also make me feel really sad. I’m sad at how annoyed I became when she made me pull over on the way to her Christmas recital because she was just SO thirsty! I’m mad at myself for not realizing how skinny she was, even after my friends kept commenting on how tiny her frame was becoming. Even writing this now makes me feel like I should have known, but the reality is, I didn’t. And after months and months of racking my brain, trying to make sense of it all, I finally realize that I need to forgive myself. I have to let it go and believe that even though I didn’t see it coming, I was able to recognize that something wasn’t right. The mind is funny that way. Well, my mind is. It’s easy for me to obsess over every little sign I missed and super hard for me to acknowledge that my strong maternal instincts are what saved my girl. That is a fact. Luna wasn’t in full DKA at diagnosis and doctors kept saying how we caught it early, but in that moment I wasn’t ready to receive the message. All I did is focus on was how this happened and how I didn’t know. It's heartbreaking to know that last year, unbeknownst to us; we celebrated our final “Diabetes free” holidays with our daughter. I remember we made the most decadent cup of hot chocolate on Christmas morning and drank it "worry-free." I don’t want to think this way forever. I want to remember the smile on her face when the whipped cream got on her nose and the way she closed her eyes when she sipped. I want to so badly focus on those memories, it's human nature to long for only happy memories. The truth is that all memories have value. Perhaps hard memories are easier to remember because they teach us lessons or at very least help us gain perspective. So while our Christmas festivities have been derailed due to the flu, I’m not going to let it take away from the fact that we got to spend an entire week together, watching movies, making yummy low carb. holiday treats and annoying each other to no end! Isn’t that what the holidays are all about anyway? I wouldn't say that I'm thankful for the flu, but at the end of the day (and in between doses of Tami-flu) I'm thankful for downtime it provided. I'm also thankful that for the first time in my life, I didn't waste my end-of-year recap thinking of ways to improve myself. I don't want to resolve anything. I want to enter the new year loving myself. Which is no easy task! Even writing it, feels heavy. But I'm ready to let go of some guilt and I'm ready to stop questioning the unknown. I'd like to think that we would have lived our life differently knowing that our daughter's life would change in an instant, but I've realized that there's no sense in even thinking that way. What I know for certain is that life is all about moments. We need to remember to live in every moment, try to find the silver lining in even the worst because in an instant everything can and will change. Merry Christmas from me and this little blog of mine!
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Here we are again, after months of writing many personal pieces; I needed a break. I’ll be totally honest and say that being vulnerable is uncomfortable for me. I wrote a few pieces, but I just couldn’t bring myself to post them. I finally came to the realization that I needed a break from my own feelings. I needed to get out of my head and to take a moment to be present and let life pass without being overly conscious of every instance. As I’ve said in the past this disease forces you to live SO consciously that not doing so feels like a vacation.
But alas, the time has passed and a lot has happened and I’m ready to share again. The biggest change in our T1D journey is that Luna is finally out of the “Honeymoon Phase” of her disease. The honeymoon phase is a period after diagnosis where the remaining Beta Cells in the pancreas still store/produce insulin. This period is both a blessing and a curse. A blessing, in that very little insulin, is required to cover carbs. For example, Luna’s insulin to carb. ratio was 1unit of insulin for every 20 carbs consumed during honeymoon. Now her ratio is 1unit of insulin for every 8 carbs, double the amount of insulin is needed to cover her meals and snacks. She doesn’t necessarily take more shots than before, just the dose is different. And a curse because the honeymoon period is tricky to manage because you literally have no idea how much insulin the pancreas is still able to produce! Meanwhile, we are following a set ratio, which leads to many bouts of low blood sugar. And that my friend is terrifying! So after a solid 9 months of “honeymooning” (horrible name, by the way! Honeymoons are supposed to be fun and relaxing. This is more like the calm before a major storm), all her Beta Cells are officially dead, removing yet another variable. Not to say that anything about this disease is a constant because it’s definitely not! The only constant is that Luna is insulin dependent. The rest of it sort of depends on calculations, timing, and luck. For the record, this is only our experience. The “honeymoon” phase can be long or short or non-existent. It all depends on the person. Another change is that Luna decided to give Dexcom a try. Dexcom is a continuous glucose monitor that is made up of three parts; a sensor, a transmitter and a receiver. The sensor is the part that is inserted under her skin. The transmitter is the tiny computer attached to the sensor which communicates her blood sugar readings every 5 minutes to a receiver. Dexcom provides a receiver and you can also use a cell phone as a receiver. This tiny device has provided so much peace of mind! The best part is the alarms that sounds when her blood sugar is below 80 or above 250. Talk about an instant anxiety reliever! Depending on the day she’s had, it can eliminate overnight finger pokes. We still do a finger check before meals or any necessary corrections. As with anything, Dexcom isn’t perfect and we always want to have as much information as possible before treating her. Luna has a love/hate relationship with her Dexcom which is why we remain flexible and allow her to take breaks from wearing one. I personally hate having anything on my skin, so I understand! Plus, it’s her body and she will have the ultimate say. (More on that topic at a later date) Paul and I both agree that life with Dexcom is pretty sweet- unintentional Diabetes pun. We also agree that life with Luna is pretty sweet! (again) In a few days, she will celebrate her 11th-month dia-versary and she remains as resilient as ever. The last few months have tested us in a variety of ways and through it, all Luna has remained the light that has seen us through. She has proven to be a fierce advocate for herself and for her T1D community. She has lent her voice, her time and her efforts to raising money, volunteering and celebrating her fellow T1Ds. She may only be seven years old, but Luna has a purpose and is on a mission to make it known. Every single time you like, comment, share or generously donate it truly means the world to her and to us. Thank you. It should be noted that this is not my best writing, but with the one year anniversary of her diagnosis lurking around the corner I find myself in a bit of a fog. What I am clear on, is how much writing helps me process all that has happened. Reading your comments and emails remind me that I'm not alone in my feelings. My soul is eternally grateful. It’s unbelievable that six months have passed since Luna’s diagnosis. We spent this past weekend at a beach in Holland, Michigan. While Luna splashed around and played in the sand; Paul and I talked a lot about what the last couple of months have meant to us.
Most of our conversation centered on how gracefully Luna has accepted her new life and how she remains authentically Luna. At diagnosis, we both had a plethora of fears, with our greatest being how this diagnosis would change our girl. Six short (and very long) months later, it’s such a relief to see that she is exactly the same fun, free spirit. Prior to Diabetes, Paul and I were often frustrated by her strong-willed nature and overall passive attitude. She was always able to justify any situation by pointing out an absurd detail or silver lining, of sorts. We often joked that Luna is smart, tactful, and beautiful; with a splash of Disney villain. We’re talking about a kid, who at four, formed a club called the Trickster’s Club and admitted only the naughtiest of kitties. (Her words, not mine) I wasn’t allowed to join. The first and only rule of Trickster Club is, “Tricksters don’t take pictures!” Which is why prior to the last year Luna never looked at the camera or ran away at the sight of one. Yes, this is real life. And even post diagnosis we’ve had our fair share meltdowns, timeouts and VERY LOUD CONVERSATIONS! And still Luna my trickster, my naughty kitty remains the same. In fact, we are the ones who have changed. The same character traits that drive us crazy have sustained our daughter. We’ve had a lot of moments since diagnosis that has shifted our perception of Luna. We aren’t perfect parents and often struggle with the pressure of the disease, but looking back over the last six months we are thankful to have gained a better understanding of what life with Luna means to us. While at the beach, we spotted a woman wearing an insulin pump. Of course, Luna ran right up and introduced herself, shared that she was also a Type 1 diabetic. I watched from a distance as they chatted and then went over to introduce myself. Shelly told me that she was diagnosed when she was 4 years old and has been a Type 1 diabetic for 44 years. She chatted about her life with diabetes and how it shaped her. We talked about all the different ways managing Type 1 has changed and laughed at some of the absurd "cures' strangers often suggest. She attributed her overall good health to the fact that her mother was a fierce advocate and inspired Shelly to do the same. She applauded Luna for being fearless and open about her diagnosis; and advised us to never hold her back from disclosing anything she wants about her life with Diabetes. Walking back to our spot, I felt relieved to have met Shelly, a perfectly healthy, vivacious and super-hilarious Type 1 diabetic. Paul pointed out how our meeting was definitely not a coincidence. After the beach, we ate dinner at the New Holland Brewing Company. We ordered drinks and toasted to our girl. We told her how proud we are and how she continues to impress us every single day. She told us that the biggest lesson she’s learned is that she isn’t alone. She knows that there are a lot of people who love and support her. And she’s right; sitting there I realized how many people have walked into our lives in the last six months. All of this has served as a reminder that there is still so much good in this world. Their support has taught us that we don't have to endure all of this alone and that it's okay to ask for help. My heart was happy to know that Luna felt the same. So again, cheers to you my Luna and to your effervescent, trickster, naughty kitty, valiant ways. Every woman enters motherhood differently. Each mama has an interesting story of how they envisioned motherhood, followed by the realization that like most things in life, it doesn’t go as planned. Anyone who knew me prior to becoming a mom likely remembers me saying that kids weren’t for me. I had a vision of what I wanted my life to look like and having a child wasn't part of the plan. Don’t get me wrong, I liked kids, but the thought of being responsible for a life is next level pressure. That changed once Paul and I moved to Chicago. Being in a new city, thousands of miles from our families made me realize how much I wanted to have a family of my own. Minutes after becoming a mother, I remember experiencing every feeling possible. Holding my Luna for the first time was surreal. I remember making eye contact and feeling a rush of emotions. It was like finally meeting someone you stalked online for the first time. (I realize how insane that sounds). I knew everything about her, she was literally part of me for nine months, and now I was finally meeting her. The first thing I said to her was, “Hello Luna, I’m your mama.” And so it was.
Motherhood did not come naturally to me. In the nine months I was pregnant, I did everything I could to prepare. I read books, bought all the recommended baby supplies and took a few suggestions. Looking back, I realize all these steps only provided a false sense of preparedness. Once Luna was home, reality set in and it was difficult for me to adjust. I’ve never been keen on going with the flow and it never occurred to me that this child would have preferences of her own. Big mistake! Anyone who knows Luna will attest to her very vocal, opinionated ways. On top of everything else, Luna had terrible colic and was an awful sleeper. The kid would literally never sleep! She never fell asleep nursing or taking a bottle, not once! To this day I have no idea how babies are supposed to fall asleep. We did everything we could to get her to sleep! We even hired a baby sleep specialist to come to our home; Luna almost broke her too! So there I was, a literal zombie in charge of a very strong willed, high-need baby and things were not looking good. I was a total mess most days. I remember feeling so overwhelmed and consumed with anxiety day-in and day-out. I spent so many days crying and feeling guilty about not being a good enough mom to Luna. To make matters worse, I was lonely. Living in a city without friends and family made everything harder. I was totally falling apart when it finally dawned on me that aside from being sleep deprived, I had post-partum depression. Luna was probably around five months when I realized I was feeling bad, but I didn’t seek help until many months later. I kept telling myself that I would start to feel better once we all started sleeping, but that wasn’t the case. In the midst of all the craziness, we also moved back to Sugar Land, Texas. Much to my chagrin, Paul's contract was over, bringing our time in Chicago to an end. Once back in Texas I started to feel better, as we were closer to family, but I still struggled to find my rhythm as a mom. I would spend countless hours researching ways to become a better mother; all that research resulted in me feeling inadequate. Finally, Luna’s first birthday rolled around and I decided to make her birthday cake. This would be the first time she had cake, so I wanted to be sure that mine would be her first. I remember her little chubby fist squeezing the cake, before shoving it in her mouth. She immediately looked up and we locked eyes as a tiny tear fell down her cheek and she shrieked MAMA! Then and there I knew that despite everything I thought I was doing wrong, she didn’t care. She loved cake and she loved her mama. We only lived in Texas for another couple of months before moving back to Chicago, this time permanently. By now, Luna was finally sleeping for longer periods of time and I was feeling better. A lot of things happened in between those years, some of which I’ll admit are not my proudest moments, but I learned a ton and we grew together. Super-fast-forward to now; I find myself struggling again. There hasn’t been a single day since Luna’s diagnosis that I haven’t felt totally anxious and teary. I made it a rule early on that I would never let her see me fall apart, and so far I’ve kept my promise. (Although admittedly, some days I have to do quick run to the bathroom after an injection). Once safely behind the door, I give myself a moment to breathe and remind myself that I'm doing the best I can. I tell myself that the number on the blood glucose meter is not a measure of my mothering abilities, but I’d be lying if I said that those numbers didn't affect my mood. I feel like the first two-and-a-half months I was running on fumes, trying to learn and make sense of it all. Now, five months later I feel like I’ve hit a wall, and I feel guilty. Most of my guilt stems from feeling like I can’t save her, nor take her place. I feel guilty for having a perfectly functioning pancreas, and for my inability to be a strong person. I feel guilty for having to wake her at night to correct a bad low, or for poking her at night to correct a high. I wake up 2-3 times a night to check on her, and some nights I feel like I might break-down just looking at her. I also feel stagnant. I have so many plans, of which I have very little desire to get off the ground, and I've become very forgetful. I struggle to remember anything that isn't related to diabetes care. The worst is that I feel that I've let people down, but I can't seem to pull away from this routine. Being a full time pancreas is no easy task. In addition to my personal struggles, Luna has been asking some pretty tough questions and saying some heartbreaking things. Shortly after diagnosis she told me she wanted to go to heaven because she would be free. I asked her what she meant and she said, "That in heaven she wouldn’t have diabetes and be free." Totally soul crushing! Freedom is very important to Luna! From a very young age, we knew two things about our girl: 1. she is extremely strong-willed and 2. She’s a free spirit. Unlike Paul and me, Luna is wildly expressive. She doesn’t have a shy bone in her body and is happiest near a large body of water. She is next-level creative and is the life of any party. I mean she truly lives her life at full volume; making all of this massively frustrating for her. Side note: As I type this Luna, in full costume, is using a dry erase marker to add freckles to her cheeks as she prepares to perform her own rendition of “Hard-knock Life" from the musical Annie. So this is life, currently. It’s a giant ball of emotions, frustrations, defeats and victories. A day after diagnosis my friend and fellow T1D mama Zeida told me that even after all these years she still feels those raw emotions, especially when her little girl reaches a big milestone. Luna graduated from Kindergarten this week; change is on the horizon and I feel very anxious about it. For now, I have to cling on to the notion that things should be taken one step at a time. I need to give myself a break and focus on the positive. And some days are better than others, nights are the worst. Yet every morning I greet my girl with a brave face and take on the worries, so that she can continue doing what she’s best at: living her life to the fullest and giving diabetes a run for its money. After hearing Luna’s diagnosis, I remember questioning if life would ever feel normal again. The thought of doing the most mundane things felt overwhelming. My brain was instantly flooded with questions. I begin to think of the carbs in every lunch I had ever packed. What about eating at restaurants? Do they provide carbohydrate counts? And even if they do, are they accurate? I found some solace in that Luna has been gluten-free since birth, and is accustomed to making healthy food decisions. Sadly, my little slice of comfort only lasted long enough to realize that even the most gluten- free nutritious foods have carbs. All of which have to be accounted for, to ensure that Luna receives the proper amount of insulin. These daunting thoughts consumed me, all while simultaneously hearing, “Don’t worry you can do all of the exactly same things as before.”
But how? is the "million dollar" question that no one really has an answer for, and how could they? Type 1 diabetes doesn’t care about constants and variables. Type 1 requires hour by hour critical thinking followed by a reaction. Which by the way is definitely not the way I am used to operating! Being faced with my new reality was and is still very scary at times. Every time I hold that needle up to Luna’s body I pray that all my calculations are correct and that I remember how much activity she had/will have that day. Talk about conscience living! In a few weeks, we will be in the fourth month of our "new normal" and I can proudly say that school lunches are being successfully packed, partly because Luna likes to rotate the same five meals; we have eaten at restaurants and even took a road trip to Tennessee. We have found that with a bit (OK, a lot) of research we can do pretty much anything. I went to bed early one night during our recent trip to Tennessee. When I woke up the next morning Paul told me he watched Luna dance around the campfire for hours. He also told me that he put her to bed in the same clothes. "Awesome! She probably smells like an extinguished fire pit!" I didn't even complete that sentence before Luna came in for a hug. Oddly, I was greeted with the sweet smell of the shampoo I washed her hair with the morning before. But how? I asked myself. This time my "million dollar" question had an answer. Well, sort of. Which is simply that not every question has an answer, maybe some situations don’t make sense because it’s not supposed to make sense. Or maybe... it’s magic, this was Luna’s response. Before Diabetes I might have tried to ask more questions or accuse Paul of messing with me. Post-Diabetes, I agree. After all, Luna has proven to be the kind of girl who can take on diabetes using supernatural strength. That is magic, she is magic personified. And while I wish I could say that I’m fully content not knowing all the answers, that certainly is not the case. The last few months have really tested our innate problem solver ways. We live knowing that we may never know why our daughter has Type 1 Diabetes. What we do know is that at any moment, we will find ourselves injecting insulin to treat a high or sitting on the floor of her classroom correcting a low. This is what life with Type 1 is like. It’s a big game of 21 questions except without responses. But despite all the uncertainty, I’m hopeful that one day there will be a cure. I'm hopeful that parents like Paul and I will get the answers and that kids like Luna will get to witness that magic. I’ll never forget the day we were discharged from the hospital. While Paul was outside loading the car, I sat on the bed watching Luna play with the doctor’s kit and bear she‘d been given days prior. She kept talking about how lucky she was to receive such neat toys and to have met interesting doctors, nurses, and educators. As a newly devastated parent, the word “lucky” stung. I sat there, a perfectly healthy non-diabetic adult listening to my little girl, whose life was just flipped upside down talk about how lucky she is, and all I wanted to do was break down. For the three days and two nights we spent at the hospital, Paul and I did our best to hide our emotions, choosing instead to forge ahead with the pseudo-optimism we were using to cope. Finally, it was time to leave; I was both anxious and scared to return home. So many questions ran through my mind. What if I forgot to ask something? What if I forget to do something? Did I feel ready to leave our hospital safety net? All the same questions I asked myself six years ago when Luna was born. Knowing I didn’t have a choice in the matter, I decided then and there that I would do whatever it took to figure things out; just like I had done every day since becoming a mother.
After giving myself a mini pep talk, I signed the discharge papers, took Luna by the hand and we walked to our car. Along the way, I couldn’t help but wonder about all the families walking past us towards the hospital? What fate awaited them? Which one of these kids would take Luna’s place? I silently prayed and naively hoped that they were all there for minor bumps and bruises. When we finally stepped outside, the cold air reminded me that it was still winter and even though everything in our world changed, none of that mattered to the rest of Chicago. The world seemed different to me, and still does. As we approach our three-month "diaversary", the diabetic glasses are still very much on. I don’t know when or if they will ever come off. I often wonder if I’ll always obsess over the carb. counts, or if I'll ever stop thinking of my daughter terms of numbers? Only time will tell. Nonetheless, I'm hopeful, because I’m starting to realize that Luna is right. She is lucky, we are lucky. All I had to do was walk around the corner to know just how lucky we are. There were children at the hospital that I knew spent a lot of time there and some I knew were never going to leave. So even though Luna’s pancreas retired at the ripe old age of 6 (something Luna came up with), we are lucky! Lucky to have insulin, to have health insurance, to have knowledgeable doctors, to have a strong support system, to have each other and to have Luna. Her positive outlook and strength make this disease manageable. She is proof that life doesn’t have to be perfect to have a perfectly good life. She is an optimist, a silver lining kind of gal! As her mother, there’s nothing luckier than that. When my daughter was still in utero, I read a quote that said, "The days may be long but the years are short." During those early restless months (years for us, actually) it was easy to feel like I was on a hamster wheel. A hamster wheel that stopped abruptly during each milestone, only for a second, to remind me that my little one was growing and needing me less and less. As much as I rejoiced at the thought of regaining a pinch of freedom, it made me sad to see it happen so quickly. As we approached our one-month "Dia-versary" I couldn't help but think of that quote. Only this time it feels more like the days are weeks and the weeks feel like years. In such a small period of time, we have been thrust into the world of thinking like a pancreas and everything that comes with it. All of my emotions come to a head when I take a peek at our sharps container. The webs of lancets, pen needles and syringes completely make the bottom of the container invisible and heartbreaking. One month, I thought, ONE month! I began to think of all the little strips that had gone into the trash, all those strips containing the blood of my little six-year-old girl. My little six-year-old girl who takes it all in stride and who continues to shine her light through all of this, she has sustained us. I pray every night for a cure, less painful ways to manage it and for God to make me as strong as Luna. So here we are, folks, one month in. I started this blog as a way to express my feelings and to hopefully shine a light on a disease that is often misunderstood. I posted my first piece a few days after Luna’s one month “Dia-versary.” At the time, I shared it with a handful of people. I was torn whether or not I wanted to continue documenting something so personal and questioned if I was strong enough to put my writing into the universe. After much thought and some persuasion, I decided to go for it. Writing has always been an outlet of expression for me and my hope is that this blog brings visibility to life with T1D and provides comfort to anyone struggling. It should be noted that I’m no expert and everything I post is my personal opinion or thought unless stated otherwise. The next couple of entries I wrote a month ago. I wasn't brave enough to share them then, but if nothing else these last few months have been one giant lesson on being brave and accepting vulnerability. I want to take a moment to thank my husband who always encourages me to be strong, assures me that I am capable and loves me through it all. A special thank you to my friend, sorority sister and fellow T1D Mama, Zeida- I don’t know what I would have done without you those first few days and all the days to follow. You and Karima inspire me. Lastly a few words for my Luna, from the day you were born we joked that you demanded the very best of care, and even though your strong-willed ways drove us to the breaking point at times- I now understand and appreciate your strength. Thank you for being the rule-defying, obstacle crushing, light shining little girl. I want you to know that every sleepless night, every carb I count and weigh, all the hours of research and every word I write is for you. I love you, my girl. Thank you for choosing me to be your mama. It was a typical holiday season filled with school concerts and festivities. This particular Christmas my little family decided to stay in Chicago and then head to Texas to celebrate the New Year with our families. Luna was buzzing with excitement as she would soon be reunited with her grandparents and cousins. Finally, NYE was upon us! We spent the day lounging and watching the kids run around. Later that evening we stepped into our festive wear and we were off to ring in the NEW YEAR!
The next day, our little one who spent most of the night dancing with her cousins was exhausted. We’d stayed up really late, so we didn’t pay it much mind. The only striking difference was the copious amounts of water she was consuming. We attributed that to the warmer Texas climate and again, paid it no mind. The lethargy and thirst would continue until we arrived in Chicago, a few days later. The entire time, my husband and I knew something seemed off; when she wasn’t able to run up the stairs to our third-floor apartment, we knew something wasn’t right. Her doctor’s office was already closed for the evening, so we decided to put her to bed and call in the morning. That night was very restless – I sat down at my computer and googled the words, Tired and very thirsty child, that simple five word Google search produced three words: TYPE 1 DIABETES. With my heart racing, I begin an all-night, one woman internet diagnosis rabbit hole. When my husband woke up for work the next morning, I was in a full blown manic mode. He assured me that we shouldn’t get ahead of ourselves and reminded me that "Google-ing" symptoms is never a good idea. I stopped to think for a moment and prayed that he was right. A few hours, one urine test and a "Can I speak to you in my office," later- those five words were replaced by five new words; “I think Luna has diabetes.” With my world spinning, I took my little girl on the longest walk down to the children’s hospital. The only thing I remember, is Luna asking if she was going to get shots. The word shots lingered; I didn’t know much about diabetes but I knew shots were definitely involved. It would only be a matter of hours until my husband and I knew exactly how many pokes this would require. Sitting on the bed, explaining to my six-year-old that this would not be just a "hospital thing" and that she would have to do this for the rest of her life, is the hardest thing I’ve ever done in my life. The look of fear and confusion on her face was enough to destroy the last pieces of my already broken heart. We remained in the hospital for a few days. Class, after class, we learned more than I hope anyone else has to know about this disease. We took turns poking her tiny fingers to check her blood sugar, counting carbs and giving her insulin shots before each meal. Once we were deemed competent by the nursing staff, we were discharged. Driving home, I sobbed quietly and I prayed that we could leave it all behind but unfortunately, Diabetes followed us home that day. |
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December 2017
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