There comes a time (or many times) in life when you hit a fork in the road and depending on what route you take, it can completely change you life. Now, I am not one to necessarily follow direction or holds back how I feel, have felt and what I am sure I may feel (naive? Dumb? Whichever the case, a habit I would truly love to kick). I have, however, always felt the need to have guidelines, rules, and structure to define, in a sense, boundaries…I love boundaries. I am a planner and boundaries help me plan or at least give me a sense of security of what may be allowed to impede my plan. Okay, well, maybe I am a liberal planner; I plan on planning until that plan isn’t a plan anymore, but the thoughts of having a plan comfort me. Maybe it helps me feel in control. Does that even make sense to anyone? A few fleeting thoughts and a quick light into my past…
My entire life I have had plans, but the funny thing about plans are that many times (or every time) they don’t follow suit. They change, get erased, pushed back, adjusted, added to…I can go on and on and on, you get the point. For example, throughout my teenage years I had a plan to go into the medical field. I was going to be a doctor, no, a forensic scientist, no, a doctor (at one point maybe a lawyer, although that thought was short lived)…I was always fascinated with the field. Reality came and went and before I knew it I was graduated, married and had our first baby.
Plans change. With my new life, I thought that my old plans didn’t matter. I was a mom, and that was plan enough. A year went by and I continued to think about my old plans often, but always pushed them away thinking they couldn’t exist (was it fear? Was it immaturity?) Second baby came and my plan was still being a mom, whatever that entailed, I couldn’t tell you. Being a mom really doesn’t have definition which made it hard for me to find the ‘boundaries’ which I felt I so needed; again, neglecting the continual reappearance of my old plans for sake of not knowing what to do with them. Never did it occur to me that those plans were waiting for me to take action. I loved my children, loved my husband and wished for the best for them all. They were my life, my reason for life and thought they needed to be my only plan. A quick rundown on a challenge in my ‘motherhood’ comes next.
Motherhood. I always thought of motherhood as scary, like earth shattering scary. I considered myself too stubborn, stern, and sadly, too selfish to be a good mother. I didn’t think I could share my emotions correctly; I tended to put on the stone face and trudge through anything at all cost, even another’s feelings or point of view. When I became a mother I KNEW I was meant to be one. I would sob and sob and sob (probably due to hormones, but in the moment felt it in my core) and knew that the baby (Kinzie) in my arms was the most amazing baby in the world meant for greatness. Now, I am sure every parent feels that, but speaking purely from my emotions, I knew I was right and was sure that anyone else who held my baby would feel it too. My little girl was the blessing I never knew I wanted. I was in love.
We were blessed to add another bouncing baby to our family two years later. He (Jared) was amazing and entered this world with a bang. (His birth I shall save for another post.) He added the flare to our family and made it dynamic, original and taught his mom the virtue of flexibility. What I planned for the minute, day or even month was very subject to change. He brought out the best gift in me, patience. I never knew I could have patience. I was so in love with my life, my children and my husband but found it so hard to function at the level I was previously on at the same time. I suffered post partum depression after our second baby and had one of the biggest, or so I thought, trials of my life (we will get to the ‘so I thought part’ at another point in this reading.) I cannot remember the details of that year entirely but I remember the feeling…like I was in a fog.
I can recall one moment so clearly and believe it was the beginning of my healing. I had a long day, (considering all days are long…24 hours to be exact), it felt never ending. I had a two year old ever so curious and hungry for my attention while I was soothing a cranky baby refusing to sleep, who hadn’t slept well that previous night and day, all the while, the phone was ringing in the background. I felt alone, fearful, confused and lost. I was able to identify and recognize those feelings for the first time. Feeling desperate, desperate for what, I am not sure, but desperate all the same. I started to cry, tears streamed down my face and I was not able to stop crying. And in the midst of crying I started to pray. I wasn’t even sure at the time where to start my prayer or what to even really pray for because I wasn’t sure what would help, could help and was scared if it didn’t help. I cannot tell you the time that passed because it felt as though time had stood still. In one quick moment I just stopped crying. I had a clear mind and felt confident. I looked over at my toddler, and she was fast asleep next to a pile of toys she had brought near my feet and my baby was fast asleep in my arms. I laid him down and he did not even flinch. A peace had settled over my house, my heart and my mind.
Peace. Never before had I felt at peace as I did in that moment. And for the first time I can recall, I felt the tender mercy of the Lord. I heard it clear as day in my heart… ”read your scriptures”. Without thought I picked up my scriptures and started to read. I opened my scriptures to a random page and read. Read until I felt complete peace. I cannot recall what scripture I read, or how long I read but it was the answer I was waiting for. I had read what I needed to hear, know and remember in my heart. And this one small moment sparked a chain of events that lead to a healthier me (this prompting navigated me through the first major fork in my life road.) At that moment my old plans popped into my head, never before, did it occur to me until then that plans can be altered to fit changes in my life…Which brings me to goals.
Goals. Easier spelled than made and achieved. If it were as simple as those five little letters that form together to make such a powerful word (or movement as I view it), I would have it made…G.O.A.L.S. It hit me one day that plans aren’t in pen. They are simply a guideline, a guideline for goals. And from that point on I decided that I much rather preferred goals because it made sense to me and I felt that I could form a goal through small steps (plans) and not fear to change my plans. If you are still with me, congratulations! You may be the first person to ever make it through the maze of my jumbled thoughts! I felt that there was a reason my old ‘plans’ kept reappearing; I was being prompted to not give up on them. I knew I had greater talents undiscovered and knew I could be more than a mother and perhaps, by being more I would be a better mother. For months I picked my brain, prayed, counseled with my husband(okay, those who know me would laugh at that word…I need to practice that much more…but I did tell him all about my epiphany.) Being the wonderful man that he is, he must have saw something more than I did, and continued to push me to do what I knew I needed to do. Never did a negative word leave his mouth. And so my first actual goal was set and my journey was born …
Nursing. Becoming a nurse was a win all, schooling would be easier to manage my family and motherly duties for the simple fact of time management (and able to attend school locally) and I could have my taste of being a part of the world that has always intrigued me but never knew why…the medical field. Being a mother I became more interested in the patient rather than just the disease process. I wanted that connection of helping someone at their lowest point and possibly being that ounce of help that they desperately needed. I am not sure if it shocked my family because the nursing field is full of ‘caring’ for and actively considering all facets of life…spiritually, emotionally, physically…something that I have always struggled to show. My emotions were mine and found it hard to show them. I was, well, nicely put…very matter of fact. Tackling my goals I began nursing school.
Nursing school, in condensed version, was an experience I could never forget. It pushed me, challenged me, and refused to let me play it safe. I have never sacrificed so much in my life, or maybe I should say those around me never sacrificed so much in my life. I loved it. Slowly as I dove into my studies and learned to balance school, family and church I started to get to know the real me. It felt good. I had purpose, goals, plans and most of all I had faith; Faith that I could do it, that I was doing the right thing and faith that my Heavenly Father had greater plans for me than I ever knew. I was alive with a fire burning inside me to be better, live better and achieve better. I turned to God often and my testimony was born and strengthened. My family blossomed. We became close. My husband took on the role of husband, father, supporter and when needed mommy (nanny, cook, chauffer and maid too); he sacrificed so I could continue. I am not even sure to this day if I ever completely expressed how grateful I was for him and our kids. They were troopers. I felt successful. The two little letters I had earned behind my name were a powerful representation of my goal achieved; R.N.
Registered nurse. Being a registered nurse has many meanings to me. It is something I hold sacred to my heart, a sense of belonging. I wasn’t sure why I was prompted to take the path of nursing, but I knew it was for a reason. Right as I entered the work field my grandfather fell ill…and first opportunity to relate my career to my life was fashioned. It gave me a sense of belonging and a way to pay him and my grandma back for all the things they had done for me. I could show my love and appreciation to them by being available at any given moment when asked. He was proud of me and I will always remember his smile when he watched me talk about my passion or when I would help even in the smallest ways. I thought this was the purpose for my path. Shortly after, he passed away and I felt anger surge through me. Without him what was my reason? Taken too soon I couldn’t process what a loss it was for me, for my family, for everyone who ever knew him. I had to redefine my role.
Definition, define. Seems as though the root of that word is often in my thinking; perhaps because it is how I work. I set out to redefine my role in life and in my career. Ever so humbly my husband picked up the pieces of my broken image and allowed me to continue with my vision. My children were proud of me and for the first time I felt as though I was a good mom. My kids brought out the best of me and taught me so many lessons. Their patients, positivity and dedication to me and their dad were infectious and it harvested inside me. They helped me grow. They gave me more of a purpose. I looked for a schedule that would better fit their schedule and Home health was the answer. I was able to build a rapport with my patients. I loved them. I cared for them. I had empathy for them. I worried for them. I worked because of them. When I went into this field my thinking was I am going to help those out at pivotal moments in their lives, teach them, and leave a mark. But truth be told, it was them who played that role. I merely was the recipient of so many life lessons and benefited every day by simply going out home to home doing my job. I lead a very blessed life, all through the tender mercies of the Lord. When we listen, we receive. A lesson I wish I could have learned earlier on in life. It was clear to me that this was my reason for the path I took. I was meant for this exact path. My spirit continued to evolve and my Faith tested many times. I welcomed changes and adding another baby to our little family was next in line for change.
Change. Ready or not changes will come and go. One thing in life I am certain of is that there will always be change. Seven years after our son was born we were adding another baby to our busy life. A baby girl came in the way of an answered prayer. She filled our lives with so much more than we could ever realize. Halfway through that pregnancy I went on modified best rest and decided it was time to slow down (slow down? I didn’t even know how to do that or where to start.) We made a family decision that I would be staying home until our new baby was 1 years old. Staying home was a huge adjustment. I would see my old patients and feel a part of me saddened that they were a past part of my life and my life was now different; but I wasn’t sad to be staying home. It was just redefining one again, my role as mother not provider.
Being a mother. I never knew the absolute joys I could have daily being a mother and being blessed to stay home. My previous attempts at being a stay at home mom were much different with the battle of post partum depression. It was like I was getting to experience everything for the first time. It was clearer, happier, and easier. I felt more equipped and successful at what I did in the home. My children came first always, but I really was able to dive into the role. I went to school parties, trips and meetings. I actually became somewhat domesticated (yeah…something I thought wasn’t possible!) I was cooking, playing, and crafting. My children loved me being home, and took full advantage of a mommy rediscovering the true love and joy of simply being just a mom and not needing anything more. My focus was them, never distracted. I didn’t have to cook and chart. I didn’t have my phone on my hip ringing throughout the evening with patients, doctors and nurses calling for something. I was able to be fully present and focused on just them.
Focus. Many things take focus. I dedicated my entire year to being solely focused on my family and letting everything else just be. What a blessing it was. That year our oldest was sick on and off. She missed several days of school and had been into the doctors several times. At one point we all noticed changes in her; attributed those changes to her just growing into herself. She appeared to be somewhat cold, direct and indifferent. My biggest fear seemed to be taking form…she was a little version of me! She lost weight and was tired all of the time. Being paranoid I had her in the doctor office several times. The diagnosis we received varied from physician to physician and day to day. They ranged from severe sinus infection, mononucleosis, to her being dramatic and me a paranoid mother. I requested a blood test to confirm mono, but was met with negative affirmation that if we test there isn’t a real treatment other than rest and testing would do more harm than good in a young child. At the end of the rollercoaster of appointments I started believing what I was hearing…it was all me, I knew nothing; I was wrong, paranoid and dumb. I cried and fought those feelings of defeat, but felt completely at odds with what to do. I was lost again, with a desperately sick child and doors closing on me.
Sick. The word alone makes me shutter. I have been around sickness often; it was the nature of my job. So why was I letting this one word defeat me? Her 10th birthday came and went and her health and symptoms were worsening. About two weeks later we were back in the doctor office (seeing the same P.A. that I had allowed to make me feel worthless and wrong. He wasn’t our regular physician which we love.) This time was different. This time I knew something had to be done. She was sick, in pain and desperate. My daughter seemed to slowly be fading away. I went in with demand. I needed to know what was wrong and knew in my heart this was my last chance. Initial thought was appendicitis (but she didn’t have elevated WBC) so I ruled that out in my head given her previous symptoms. They attempted to send us home saying if it is onset of appendicitis it would show later and we could go to ER upon worsening symptoms. I refused. Her symptoms had worsened. I was desperate. I requested urinalysis and to draw a rainbow of labs. She was spilling urine in the office when they tested her. Diabetes. It was my first thought…but I pushed it as far away as I could. It could be appendicitis, spilling sugar due to stress and pain…it could be. As if bargaining with my own rational thinking would change the outcome.
Outcomes. I usually welcome most outcomes, as they are product of answers. One outcome I couldn’t welcome was my daughter being diabetic. Not her, not us. We were sent home NPO (nothing by mouth) and were reassured we would get a telephone call by noon (3 hours away) with the results…either diabetic of acute appendicitis. Please, please, please Lord, let it be appendicitis. I knew it wasn’t. I wouldn’t have the drive I had to save her if it weren’t. My soul knew it. I refused to go home. We stayed close to town. Hours passed and my daughter was tired. Reluctantly I went home. Noon came and went with no phone call. My husband and I were both on the phone trying to get a hold of the P.A., to no avail. We continuously called nonstop to the office and not one single person would direct us to the P.A. or nurse. We left countless messages. Panic set in, and I knew the answer. I was finally able to get a hold of the on-call physician. His words were like a knife “we dropped the ball on this one. Head to the emergency room, they are expecting you.” I would like to say at this point I was eloquent and filled with grace. I wasn’t, I was outraged, furious, fearful and enraged. I simply replied “No crap! What are her lab results?” He started rattling off her results and with each number I felt an increasing sensation of numbness starting in my feet. It was true. She was sick. I was right. The one time in my life I didn’t want to be right. I then murmured the three letters that would forever change my life, her life “DKA.”
DKA. DKA or diabeticketoacidosis, the game changer, the culprit, the evil. Type 1 diabetes, juvenile diabetes…however it was worded, it stung. My daughter was just turning acidic (which was something I didn’t need a physician to tell me…I knew by her lab results, I knew because my background. I knew because I was her mom.) I kicked myself. I was mad that I didn’t step up sooner and that I had let the one person break me down, it wasn’t in my nature, so how it happened I am not even sure. I was to blame, it was me. I was mad because He didn’t hear me. I specifically said let it be appendicitis! I was specific, I was faithful, I was obedient and it didn’t change anything. We walked into the ER and things went smooth. It is a blur, but I remember what a relief it was to have an answer and to catch it when we did. I was relieved she was alive. I was relieved my mom was with me since my husband was at work heading into the hospital. I was relieved I wasn’t alone. I was relieved one of my best friends was working in the ER that night. I was relieved to have an answer…but all the same I was mad. I went into autopilot mode, nurse before mom. I had a goal and it was to make sure that from that exact moment on I would do everything in my power to help my daughter live a full and healthy life. I knew that how I reacted from it would set the precedent for the rest of our lives. I wouldn’t let diabetes defeat us, wouldn’t let it define us and I was not going to even let it restrict my daughter. I was in fight mode, I knew my daughter was special and that she was capable of so much the first time I held her; the surge of greatness was unmistakable. I then knew that in the moments my daughter was born I received revelation of her impending battle. My Heavenly Father knew me well enough to know that I needed confirmation the day she was born to turn to when this time came. I drew on that strength and knew I was not alone. Anger left me and I was left with uncertainty; but my heart swelled with love and appreciation. He knew me, and that was all I needed in those moments to carry on and fight.
Fighting. I am good at that, I am a natural fighter, just ask my siblings. Perhaps I am not use to fighting for survival…but I knew how to fight. That night she was admitted to the pediatric floor. I stayed with her every minute, I didn’t leave to get a drink, go to the bathroom, cry, shower, change. I didn’t leave. I stayed. I couldn’t leave. I would like to say at this point I was stoic and magnificent. Truth be told, I was scared and in survival mode. I didn’t want her to feed off my fear so I pushed my mommy half to the side and let my nurse side step up. Get the job done was my motto, and that was what I was going to do. I took control, remained indifferent and made sure Kinzie knew I knew we could get through this. I stood strong even when on the inside I was dying. I didn’t sleep a wink that night. I remember praying, crying, pleading and thinking. I knew this disease, I knew the outcomes of this disease, I knew the seriousness of this disease and I knew if I gave way this disease would win. I knew I refused to let it win and so in the early hours of the morning I made a decision that this wasn’t Kinzie’s disease, it was our family’s disease. What she needed to learn, we all would learn. What she goes through, we all go through. Strength in numbers, knowledge is power education is key.
Strength. Do you know yours? Have you ever stopped to think how your strength will be tested? All I know is that we will never be given more than we can handle. I also know that if we listen we will be directed down the paths that can help us navigate through our darkest hours. I am a true believer that Christ will not fail me, fail us. He is the constant in this continuously changing world. I can be angry, impossible, and unjust, yet He remains at my side. I cannot recall the entire account of the following weeks. I remember we stayed only one night in the hospital because of my training and how quickly Kinzie was willing to learn. She was a sponge. She stepped up to the plate right away and did every task that was asked from her. She listened about carb counting and was counting her carbs by her second meal. She only had one session on learning to draw up insulin and inject it and checking her blood glucose, that is all it took for her to learn. She was awesome and had all of us in awe. She was stoic, she was strong, she was amazing, and she was my daughter. I was proud. That day we had countless visitors, phone calls, messages and prayers. People; friends, family, acquaintances stopped their day to reach out to us. They lifted us. In our time of need, they were there. No one had to ask, they were simply there. I prayed countless hours for guidance, strength, courage and insight. We were blessed with the most amazing medical team. Our endocrinologist and nurse educator have been such a blessing; they love their job and are good at it…and they get it, they understand.
Understanding. Understanding, a word often overlooked and underrated. I do not believe I have the gift of understanding, something I struggle with. In the months after our diagnosis I can only really remember engulfing myself with knowledge, resources and organization. I set everything up like I would if I were a nurse coming into a home. That is how I managed, how I coped. I was in overdrive and had a mission to fulfill. I cannot recall specifics, but I can recall moments, moments that have stuck with me; many of them leading to the word understanding. The words I speak ring all too true to our life now and brings new meaning…”You never really know unless you live it.” Remember those words, carry them with you and recall the meaning when you encounter anything that may need more understanding. I wish I had more understanding when I was working. I was a great educator. I was very much by the book, get the job done and would refuse not to educate my patients. I wasn’t however quite in tune with the understanding that diabetes, whether it be type 1 or type 2, carries much larger burdens. Spiritual, financial, physical, emotional, it encompasses so much more than just the disease process itself and I just didn’t get it…until I lived it. I thought of my patients as my extended family. I thought of them often before our entering the ever so challenging world of type 1 diabetes and perhaps even more once we became a part of this world. I felt in a way I had failed my extended family that I could have offered so much more.
Family. We all have one. I have a great one. I have amazing parents who somehow find it in themselves to accept me for the way I am, faults and all. They always are there to help rescue me in any time of need. They are amazing and made pretty amazing children. I have five other siblings. I love all my siblings the same, they are so wonderful and helped pick me up during this time. They thought about my family, they made themselves available. They redefined family. One morning one of my sisters called me, it couldn’t have been more than a few months after our diagnosis because we were in the mode of finding our new normal. She sounded choked up and emotional (well, she is emotional. She cries when I cry, she laughs when I laugh. She is blessed to be a naturally caring person who is always willing to carry someone else’s burdens. I admire that in her.) She told me that the previous night she had been thinking and had an overwhelming urge to tell me to journal. She said I needed to write down everything. Write my thoughts and feelings, Kinzie’s thoughts and feelings…our entire family’s journey, our struggles, our triumphs, our trials. She said she knows that sometime, at some moment my words could help someone else and that everything we are going through is happening just so we go through them. I acknowledged what she said and immediately filled my head with self doubt. What do I have to offer? What could I say that was worthwhile? She told me that she knew she had that feeling for a reason. She has a beautiful heart. She is my pillar of light, my strength when I am weak…my other half. She has been my best friend my entire life. She sacrificed many hours with her family to be a part of this journey, to learn, to grow, to help, to be there for whatever. She refused to not carry part of our load, and continued to encourage me to journal.
Journal. I have one…or maybe five, but must admit I am not an avid journa-ler (like that word?) So I used facebook as my outlet, it was my journal in a sense. It is a marker of many (not all) pivotal moments in our struggle to finding our new normal. I can go back and read one entry and remember immediately the feelings I was experiencing in that exact moment. That is when I realized I do journal, in a non-conventional way. My thoughts, feelings, triumphs and struggles were conveyed in short phrases, run-on sentences and perhaps ridden with humor at times. I had found my therapy and hadn’t realized I had been doing what my sister pressed me to do. The task left is to compile it all in one place so that other people, perhaps strangers, mothers, grandparents, siblings, or even friends of other type 1 people could access it. For the love of my daughter and for the hope that not one other parent, friend, sibling or family member feels alone, hopeless, lost, or numb. What comes with a chronic illness is usually a sense of unity from other people sharing the same illness. It connects perfect strangers through the same trials and triumphs. With a disease also seems to come a sense of pride. My daughter is a type 1 diabetic; it doesn’t define her, limit her or hold her prisoner. I am so very proud of that.
I first thought my I would blog or journal or document all about diabetes; which, in fairness does consume much of my day. I realized though, that I am a wife, a mother, a nurse, a daughter and a friend. I have so much more to share than just our journey with type 1 diabetes, in fact, I want other people facing type 1 diabetes (T1D as I put it short hand) that there is life beyond T1D. I have 4 wonderful, amazing, intelligent children. I have a strong, amazing, loving husband. I am a spiritual, God loving woman and credit all of the greatness in my life to Him. So my writings will be dedicated to T1D, as it is therapeutic and I am an advocate. Raising awareness also means sharing my story…but this will also encompass all aspects of my life. Sometimes it is nice not to mention T1D, sometimes I want to share about something without having to think about T1D, I have many stories, thoughts and ideas beyond T1D. These writings, simply put, are going to be what I want to write about, it is my life with a daughter who has T1D, but it isn’t the defining aspect in it. In general it is to raise awareness and be a light for those going through the same things. A struggle is a struggle but when we share it and embrace it, it can become a trial. Trials are to be overcome. I would much rather overcome my trials than continue in life struggling with the same thing.
For those of you reading I will compile more jumbled thoughts off of my facebook page from the past year….including adding our last addition to our family, Mason. Starting perhaps with my entry I put on the day we received our diagnosis and the day that has forever staged the rest of our lives. For those of you struggling with T1D, or any other chronic illness, you are not alone. I have continued to stay at home with my children, realizing that the paths I have been inspired to take were to develop talents that were going to be very much needed at home. My reason I had been searching for the entire time was right before me. My family, my children.