Ashby’s Journey

I am writing this as a personal history for my daughter and family.  I am also doing this because it is incredibly healing to write about these life changing events and challenges in our lives.  Our daughter Ashby was diagnosed with Type 1 diabetes on February 3rd, 2015.  2 weeks before her 11th Birthday.  My Mother in Law and two brother in laws both have type 1.  My mother in law was diagnosed at 16, My brother in laws 9, and 20. With that said, I have always been keenly aware of the disease and symptoms.  No one in my family or distant family has type 1 diabetes so I was always confident we would avoid this disease.  Ashby started noticing she had to go to the bathroom more than usual for a few weeks.  I asked her if it was because she was drinking more water.  Yes, she thought this was the case.  One day she came home from school and said she had blurry vision while looking at the board.  I had just had her eyes checked a few months ago and her eyesight was perfect.  That Sunday after church driving home I had the distinct thought come into my head out of nowhere that Ashby might have diabetes.  Until then the thought never crossed my mind.  She wasn’t loosing and weight, and she didn’t seem thirsty all the time, she was going to the bathroom more than usual but not every hour or anything crazy abnormal.  I said a prayer of thanks for her health and was so terrified of the thought I knew was from the Spirit. 

Tuesday morning before Ashby left for school she complained of her vision being blurry again. After they left for school I got in the shower and I knew in my heart she had diabetes.  Something inside me a feeling I can’t describe told me the answer I couldn’t bear to even comprehend at that time.  I cried and cried before I told anyone or even made an appointment to take her in.  My husband was out of town for work so I texted him and let him know I had a bad feeling about Ashby.  He told me I should make an appointment to see the doctor and get her in today.  At that point I was so scared of the reality of the situation I didn’t want to call the doctor at all.  I know it sounds crazy but I did not want to make that appointment, I was scared to death. Ryan literally had to make me call the doctor.  I felt physically sick as I called and told the nurse her symptoms.  I texted my mom to see if she could come watch the boys while I took Ashby into the Doctor.  It felt so strange texting the words I am worried Ashby might have juvenile diabetes.  It made it all the more real and scary.

All that morning and afternoon I felt extremely emotional and sick to my stomach. I cleaned the house, hung up and put away all the laundry and put dinner in the crockpot.  I was trying to stay busy and positive and not think too much about it.  When Ashby came home from school I told her I had made an appointment to go see the doctor so we could figure out what was going on with her eyes and other symptoms.  She was relived and happy when I told her we were going to see the doctor.  When my Mom came I told her about the dinner in the crockpot if we weren’t back in time.  Ryan was at this point on a plane flying back home. 

The appointment didn’t take long and we saw the Doctor right away.  They had her pee in a cup and I knew they were checking for sugar in the urine.  When they said it has traces of sugar and they brought out the Glucose monitor my heart sunk.  I was hoping with every fiber of my being that by some miracle I was wrong.  They tested her blood and in a few seconds the nurse showed the reading to the doctor.  I could tell by her face that it was not good.  He asked her to do it again and I could tell it held the same result.  The doctor told me the number and I knew from being around diabetics that number was way too high. It was 485.  The doctor then told us she did have Type 1 Diabetes.  Ashby and I both started crying and I immediately held her close to me.  I was in complete shock now and it was an out of body experience texting Ryan and my Mother the words, “Ashby has diabetes.”  I felt so alone and heart broken but I knew I had to be strong for my daughter.  Ashby turned to me with a smile and said, “well I’m glad it’s me and not one of my brothers.”  Her response is the epitome of who Ashby is.  Kind, unselfish, and wise beyond her years.  I listened to the instructions they gave me and took her to the ER.

I texted Ryan’s parents and they were able to meet us at the ER. Ryan was able to meet us there too once his plane landed an hour or so later. We were both so relived to have him with us. The hours and days that followed were some of the longest, most difficult days I have ever experienced.  Once she got her IV started and finally admitted to the hospital it was almost 11:00pm.  We were emotionally spent and physically exhausted.  Doctors and nurses came in to see us and gave us a lot of information and knowledge.  I was trying to keep my mind sharp to retain anything and everything they were teaching me while inside I was still in shock and my heart was being crushed and torn into a million different pieces.  It was so overwhelming it felt like a huge weight was crushing me from every side.  One particular moment it all hit me pretty hard.  Ryan had gone home to be with the boys for the night while I stayed the night with Ashby in the hospital. Right before bed around 11:15 or so the nurse brought in Ashby’s Blood glucose meter and said, “This will be her meter, I’ll show you how to use it.” At that moment every single part of my heart, mind and body rejected the idea that this was now her life.  The feelings were so real and palpable that it scared me.  I wanted to take the monitor throw it out the window.  I wasn’t angry I felt in complete control, my mind was rejecting the idea in any form as if I had no logic left in me.  It was even more strange how I was completely aware of these feelings while I was feeling them yet could do nothing about them.

Finally we were able to try and sleep.  Thankfully Ashby was out in 1 second and slept peacefully throughout the night even though awoken to take her BG every 2 hours.  I  couldn’t sleep all night.  I prayed for peace and strength to endure this challenge and to be at my best for my daughter and family.  The thought kept coming into my head, “This is not my life” and “I don’t know what I’m going to do”. I cried all night my poor pillowcase was soaked by morning.  I thought all night about what Ashby’s future would look like.  I thought about all the things a Mother thinks and worries about.  I thought about our 3 boys at home and wondered how this was going to work with our busy little family.  I thought about the possibility of homeschooling, giving up sports, and activities, how was it all going to work?  I felt no peace that night but the next morning I felt strength come over me to endure and to learn all I could about managing this disease.  I read the book the nurse gave me the night before from cover to cover in a few hours.  I memorized every detail of that book and by mid morning I felt I had a good grasp on it all logically.  Emotionally that was another story.

Her numbers were good all night and another Doctor saw us again in the morning.  He was so sweet and tender and when he asked if I was in shock, I said yes as I cried in front of complete strangers.  I felt so alone.  He was so kind and told me some very comforting words and advice.  I still felt so emotionally overwhelmed it was hard not to cry every few minutes. Ryan came back mid morning and then we started our education and training with nurses, dieticians, diabetes educators, etc.  Ryan’s eyes were red and I could tell he slept as well as I did last night.

We had to become complete medical experts on our daughters disease in 2 days.  Our new reality required us to be her doctor, nurse, dietician, nutritionist and diabetes expert. It was the most overwhelming and scariest thing I have ever experienced.  I felt so overwhelmed at times I didn’t even know what to think or do.  That morning Ashby was already pricking her finger and testing her BG by herself and I was giving her injections instead of the nurses.  My brain was being pulled in so many different directions it was difficult to stay focused on just one thing, yet all I could think about was Ashby and how to manage this disease on our own.

Our second night in the hospital just before bed Ashby said we should each say our personal prayers.  I was so grateful for the opportunity to pray that night.  I poured out my heart and soul to my Heavenly Father.  It was so comforting to express all the emotions I had been bottling up inside.  It was an incredibly spiritual experience and I couldn’t help but think about how this was all because Ashby wanted to pray to her Heavenly Father.  Here she is going through this difficult time and she realizes the importance of prayer.  She is teaching her Mother the importance of prayer.  Through her example I was able to grow closer to my Heavenly Father. I was struck with such amazement and awe that her Spirit is so special.  She is truly a choice daughter of God chosen at this time to help me as her Mother learn and grow and gain a stronger testimony of the gospel. 

The next day the nurses, doctors, and staff were confident that Ashby could go home later that afternoon.  What normally takes patients and parents 6 days in the hospital to learn we were leaving in 2 days with the knowledge and confidence we could do this on our own.  I know the Lord helped us understand and learn more quickly than we could ever do on our own.  His blessings are endless and his power is great.  I can’t explain the strength Ryan was to me during this time.  I can’t imagine going through this alone.  We have always made a great team and I knew this would be no exception.  It was not my job or his job it was we are doing this together all in.

Ryan got all the prescriptions, supplies as well as groceries for us when we got home.  We were giving Ashby 6 shots (injections) of insulin a day and testing her BG around 9 times a day.  It was overwhelming and all consuming.  I couldn’t even imagine how this was going to work with school, activities, church, etc.  I felt very depressed.  We went in to see our Endocrinologist on Friday.  The appointment was amazing and life changing.  She told us we didn’t need to inject for snacks and we didn’t need to test as much as we were doing in the hospital.  After that appointment everything seemed to look so much more manageable. For the first time since we received her diagnosis I really thought we could make this work.  They faxed over the Doctor’s orders to the school so Ashby could get back to school the next week.  I was so grateful to have Ryan by my side.  He is so calm and smart.  He provided me with such comfort and peace during these difficult few days home on our own.

Looking back I think the most difficult part is not having any time to process what is happening.  You have to stop everything you are doing and focus and learn all you can on their health and how to manage the disease on your own.  There is no time to even process what you are thinking or feeling.  Ryan and I didn’t even have time to talk about it at all until two days later when we left her for 15 minutes to grab some lunch at the hospital cafeteria.

Ashby’s numbers have been really good.  Especially at night, when the worry is you have a low and you will never wake up.  Scary and blunt but that’s what they tell you, that’s why it is so important we check her in the middle of the night and make sure she is not low.  So every night around 2am I set my alarm and test her BG level.  She has only been low once, which has been a blessing.  I still worry about it but I think I always will.

On Monday we met with the school nurse.  It turns out her husband is a Type 1 diabetic.  She has been amazing and I can’t imagine not having someone so knowledgeable to take care of Ashby while she is at school.  Ashby is still not able to give herself her own injections yet so I went in and did it the first day, the second day I came in while the nurse did it, the third day I did not come in at all.  I felt very comfortable and confident in the nurse; it was a definitely a tender mercy.  I thank my Heavenly Father every day for the nurse and all she does for Ashby.  She texts me her numbers and is so on top of everything, it makes me worry less about her while she is at school.  Truly the Lord is in the details of our lives.

Throughout this time we had so much love and support from our family and friends.  I didn’t worry once about our boys at home I knew they would be taken care of.  It is such a blessing to have a loving and supportive family.  I knew everyone would be there for us.  I knew our support system was deep and strong.  I can’t imagine going through this without having that in place.  My heart was so grateful for those small and not so small acts of service, kindness and love throughout this difficult time.  Truly the Lord using those around us as instruments in His hands to show us how much he cares.  We certainly felt that again and again as loving and kind acts of service were given to our family.  I will be forever grateful for that.

Each day we have been figuring this out together and doing well with our new routine.  It requires a lot of patience, planning, preparation, critical thinking, trial and error, and much more.  I feel better about it as time goes on even at peace with it at times.  I know her disease will fade into the background and will not become the focus of her or our lives like it is right now.  I know it will take some time.  I look at Ashby and see such a strong, brave, loving, positive, and compassionate person.  I can’t imagine a better version of her because I already thought she was pretty much perfect, but I know the Lord has a plan for her life and it is even greater and more wonderful than I can even imagine.  I know that her having this disease is part of his plan.  I know this will help mold, sculpt, and refine her into a more perfected spirit.  I pray each day I can use this challenge as a stepping stone in my mortal progression toward living with my Heavenly Father again.  I know He only gives us trials to make us stronger.  I know with his help we can over come all.  I know and have felt peace that my Savior Jesus Christ knows every feeling we experience in this life and can succor us according to our needs and desires like the scriptures say.  It brings me so much peace.

Ashby has been amazing through it all like I knew she would.  She has really taken everything in stride.  She has a positive attitude and amazes us each day with her knowledge, bravery, intuition, and strength as we handle this together.  I couldn’t be more proud or love her more than I do now.  She is a very special girl.