I had been invited a few times, through some of the groups I am a part of on Facebook. I hadn’t been ready, the thought of packing up my sons diabetic supplies, and snacks and heading off to a group of people I didn’t even know was too overwhelming for me to commit to. Yet today, I decided I was going to go. I packed up my kids, snacks, and Carter’s diabetic supplies, after all, the meeting was essentially in my backyard. Apprehensively I walked up to a group where there weren’t any familiar faces, just a few people I’d spoken to online. I was amazed at the warmth we received within our welcome, it truly was as if we were meeting as friends. The gathering we went to happened to be a rally for Diabetic Alert Dogs, something I am very interested in for Carter. The workings of it all are amazing, and just being there to witness the bond these dogs have with their families and the diabetic kids was absolutely heartwarming. It was freeing, being able to be around people who knew what I was going through and had wonderful stories and advice for me. Here I sit only 3.5 months in and I was speaking with people who have been surviving and managing Type 1 Diabetes for over 30 years. To say that this afternoon was encouraging and helpful would be an understatement. Though I walked into a group where the focal point was the training of Diabetic Alert Dogs, sans a dog, everyone embraced me as the mother and caregiver to a Type 1 Diabetic 21-month-old. Every clinic appointment we have for Carter, the social worker questions my emotional wellbeing as the caregiver and encourages support groups. I never wanted to go to a support group, the thought of sitting around and discussing the trials seemed as though it wasn’t for me. It was so great to have such a positive experience and be surrounded by people who knew the struggle but didn’t dwell on that, we focused on the positive aspects that cradled the trails. I would encourage any newly diagnosed family to reach out and find a group that you would like to know more about and bite the bullet and get out there. I can’t put a price on validation when it comes to diabetes, and being able to speak with people and families who have been where I am and persevered and have success stories gave me the hope I have been searching for. This group from today will never really be able to grasp how much they have positively effected me and my family, but tonight diabetes seems less daunting and more encouraging.
This is what fighting a low looks like in my house. At lunch time today I checked Carter’s blood and his glucose level was 62. I offered him some yogurt, he only ate two spoonful’s, I then offered a Oreo, not interested, I then offered some fruit snacks, spit it out. Finally I held him down and shoved a teaspoon of honey in his mouth. Then he wanted the Oreo, I guess he felt he deserved it after all that. He ate the whole Oreo, I waited 15 minutes and checked his blood glucose again he was now at 80. Since he was at least within the normal range I then dosed him 2 units of insulin for his 32 gram of carbohydrate lunch of Chicken Dino’s, fruit and veggie juice and some mac and cheese. It’s amazing how after fighting a low, one feels as though they have just completed a relay race, alone. I need another 3 cups of coffee after that dilemma, and I can only imagine the amount of cortisol that is now careening through my body. No wonder I am exhausted, as I clean up the immense amount of test strips and pile of food I clambered with in order to raise Carter’s blood sugar, I now look over at my two children laughing and eating their lunches. I listen to Ashleigh, explaining to her brother how he needs to cooperate and not be disobedient and help me with his blood sugar. Pretty interesting conversation from the same four-year-old who I basically have to take privileges away from in order for her to eat her whole meal. But for now I am enjoying her lesson lecture to him. It’s in these moments when I wonder when things will get easier and perhaps they never will, I believe diabetes is just one set of challenges after the other. We just learn to manage through the troublesome times, and make the best of them. I now look at the log sheet I have for Carter and see what he actually ate for lunch, only to see: 1 Oreo, 2 tsp. Yogurt, 1 Juice Box, 2 Chicken Dino’s, 1/4 cup mac and cheese, 1 tsp. Honey. Lunch of champions, at least I can try to sneak in some nutritious options at dinner. Right now, I need a nap!
The kitchen counter, the kitchen floor, the bathroom counter, the living room, Carter’s bedroom, Ashleigh’s bedroom, my bedroom, my car, our garage, it feels as though no matter where I look, I am haunted by test strips. I don’t even know where they all come from. Perhaps in my haste to clean up after dosing Carter I am flinging them around willy nilly, but I am pretty sure I make it into the trash each time. The test strips seem to attach to anything and everything with a static cling type bond, almost as though they are mocking me. But test strips aside, and the mess they seem to be making, Carter has found a new acceptance of this whole process we call surviving. Now when I bring him into the kitchen to check his blood and dose him for his meals, he sticks the finger he chooses to get poked out for me and when done he will assist me in lifting is sleeve or turning his leg to the side for the shot. His cooperation has made things so much easier as of late. It’s been interesting to find ways to reward him, these days clapping and hugs don’t seem to cut it. I remember when potty training his sister, I would reward her every time she used the big potty with a Hershey kiss. It certainly would be nice to be able to give him a handful of M&M’s for his resilience, yet that with the shot seems counterintuitive. We will find the rewards that make Carter swoon, but for now it has helped me so much that he is taking a vested interest in his health, even though he doesn’t know he is doing so. I prayed and prayed for the time when he would comprehend and I am so grateful we have arrived. I enjoy his aide in creating an ease about this whole regime and though I know there will still be hard frustrating days, for now I am happy to be reaping the rewards of all of the hard work Carter and I have put into our acceptance of this path we are on.
This morning, I searched through the internet in an effort to find some online diabetic support. I came across black dogs rule, which is a blog, a wonderful blog geared around the authors dogs, who are Diabetic Alert Dogs (DAD’s as he calls them) that care for the writers daughter. The blog post from March 3, 2014, entitled “What Does Living With Diabetes Mean?”, is so well written, referencing the struggle from a parents perspective and written with such raw emotion, I had to share it. Frank, (blog author) encompasses the feelings that all T1 parents feel and go through, and is so beautifully written. Frank also writes about other diabetes topics and discusses ways to find a perfect Diabetic Alert Dog. I encourage you to read the below post, as well as check out all his wonderful website has to offer. Thank you Frank, for your devotion to educating everyone on Alert Dogs, and for your heartfelt devotion to your daughter.
There is nothing better, as a parent, than watching your children play and enjoy the bond of siblings. As much as Carter loves his sister, Ashleigh adores her brother. I took Ashleigh out for a mommy/daughter date the other week and thirty-minutes in she was saying how much she missed her brother. It reminded me of when Carter was in the hospital upon his diagnosis, I came home 2 days later to spend some time with my daughter. I did my best to explain what was going on, and even allowed her to sit with me on the couch late drinking hot chocolate while we watched a movie. Around 10:30 PM Ashleigh turned to me and let me know she was ready for bed. I carried my daughter upstairs, in our empty house since my husband and Carter were still at the Hospital, I laid her down in her bed and covered her up. About 45 minutes later I heard her walking down the hall. I walked out of my room to find her laying in Carter’s bed. I asked her what she was doing, through her sleepiness she told me she missed her brother and wanted to sleep in his bed. I tucked her in, and remember standing in the doorway of my son’s room, as I watched my daughter sleeping in his bed, realized that this house and our lives would never be the same. Those thoughts could not have been more true, yet now I view the whole situation differently then I did that night. I believe now, we enjoy every moment, never taking anything for granted. My family is so devoted to each other, I can’t imagine going through my day without the comfort and support of my husband, my daughter, or my son. These days, joy is easier to find, I find it in every breath we take. I enjoy watching the strength of the bond that my children share with each other. I love that when not in the presence of each other, my children miss and long for each other. I love when I am putting my children to bed at night, after brushing their teeth, my son will climb into bed with his sister and they will hug and cuddle. I may feel as though I produce many shortcomings throughout each day, everyday, yet when I look at the bond that my children have with each other, I see something that is wonderful. With the grace of God, I have been successful in guiding an unconditional love between my children, where they lean on each other and grow with each other. As sucky as this diagnosis is, I find that it has brought out a love we didn’t even know existed. Nothing brings me more joy than watching my children play and enjoy each other, we have had a lot of that lately. Especially due to the rains we have been experiencing here in CA, it’s been so wonderful to watch my kids laugh and play together. If I have a positive from this whole diagnosis, it is that we have been forced to lean on each other and create a deeper love and understanding of each other in my wonderful immediate family. I am so enriched daily by my interactions with my children and husband, and am blessed beyond belief, that through this endeavor we have bonded together, and have the ability to watch the bond of siblings grow continually between my children.
I’ve had an interesting day today, very retrospective and difficult at times. Wednesday of last week I went back to work, the last day I worked was November 20, 2013, the day Carter was diagnosed. Come Monday, I will be off of my leave of absence from school and my classes start-up again. Tonight, when I opened up my class schedule the tears started to flow. I find today, that I am feeling stuck in the proverbial purgatory, riding the line between staying present where I am, or getting life back to normal and moving on. I knew this day was inevitable and in one regard its wonderful proof of how far I have come since Carter’s diagnosis. Yet as the mother to a 21 month old Type 1 Diabetic, I wonder, can I do it all? For an instant today fear gripped me, I wondered how much I can actually take on without something slipping through the cracks. Yet the majority of what I have on my plate is truly beyond my control. I realize that the only thing that is added to my routine now is the diabetes management. As I remember what life was like pre diagnosis, the stress starts to clear and I have found the confidence I once had, before it became shrouded with the failure I have been feeling lately due to diabetes. I love to watch my son as he looks at me with complete certainty of my capabilities to care for him. If only he knew how that look gave me the assurance I need in order to push through the day. Change doesn’t come easy to me, I was forced to accept this new routine, and now, when given the reins to take my life back, I feel more apprehensive and afflicted than ever. Have I done enough to prepare for this step, am I ready? I recognize that mentally I never really would be ready, yet I remember I have successfully, though hesitantly, maneuvered through these past three months and have gained an immense amount of knowledge. My son is thriving and happy, I may feel drained but ultimately his cheerful demeanor is all more proof that I have accomplished what I set out to upon our discharge from the hospital in November of 2013. My son is living a normal life, I know some days will be riddled with difficulty, stress, sadness, and uncertainty, however, I also know they will be filled with love, joy, and laughter. So though I sit here grieving another change, this is at least a change I am ready for and welcome. Given the past 3 months we have had as a family, through all the weakness and strength, all the growth, I am ready to embrace moving on, and getting our lives back.
This, according to my four-year-old daughter, is what the Diabetes germ looks like. This is what she believes has infected her brother and what gave him Type 1 Diabetes and is making him sick. As I watch my daughter process this whole thing in her own way, I am impressed at her level of understanding. At four, she has a better concept of what Diabetes is all about, than most adults I speak to. I am encouraged by her level of awareness, and the fact that she is so in tune with her brother’s needs. Ashleigh is the best helper and it makes me happy that she has found her own outlet in order to adjust to things. Especially these days when I feel as though I am stretched so thin, between working part-time, managing Carter, getting them into the pediatrician, sitting up through the night while Carter get’s his two-year molars in, and now Carter has a rash which appears to be a food allergy. A food allergy to what, I don’t know. It is getting difficult these days not allowing the frustration to consume me, and it’s even harder not to let my aggravation infiltrate my time with my children. I do my best, and once they go down for the night I am ready to go to bed myself. It’s hard to convey the pressure and anxiety that is associated with the responsibility of taking care of a diabetic child. Then add-on another child and life feels pretty overwhelming, I am grateful to have an amazing daughter who helps me through my days. Ashleigh has been such a source of comfort, as she keeps me smiling and laughing throughout the day. Carter adores his big sister, and will climb into her lap and snuggle with her when he needs extra love and I am occupied. My hope every night is that tomorrow will be better than the last 24 hour period we just had, some things do get better, while lately with every new day, new challenges appear. However, with everyday that passes my children get older and gain more experience, and I do as well. I am blessed to have two intelligent children who are my co-pilots and help me navigate our path through this struggle we are currently in. I remind my daughter that even though Carter has been “infected”, he is still the same brother she has always had. That the only thing that has changed with Carter is that he needs a little extra fuel to make it through each day. This explanation seemed to suffice for now to Ashleigh, and I am happy that she knows when she has another thought or picture regarding Carter’s Diabetes, she always has an ear with me to listen and help her work through her feelings.