Our Final Days

One week before Keely passed

This week marks the beginning of the same time last year of our very last days with Keely. With SMA the disease was always bigger and much more powerful than us all. From a day to day basis we never knew what would plummet and what would take the wind out of our sails. For the most part we controlled the SMA but we knew at some point it would get aggressive and fight back. keely decided early on that she was going to be the boss without any of us even knowing. This day last year she was having a few pretty consistent great days and things were looking on the up and up. So much so I decided for the first time in 3 months I would leave her bedside and surprise Shaely at her year end trip by showing up to spend the day with her. Scott and all of Keelys nurse friends promised to have her covered and sent me updates and pictures of her smiling all day. Doing this on this day felt like a necessity as Keelys care and all the scares she gave us required me to never leave the room. On the other end of this we have 2 little kids who have out their life on hold for their sister. So I left, spent the entire day with Shaely, went for lunch, did some shopping and it was really our first day spent together in 3 months. She would come to the hospital and we would take Keely around the entire hospital and just walk, we came to know the hospital and it's walls inside out. If I knew Keely was going to pass away in 5 days would I have went? Probably not but in the grand scheme of things Shaely would have understood. She always told me " Mom I don't want Keely to be alone, she's too small and I want you to be there with her". No matter what's happening in your life there's always another side where at some point you have to do the opposite. Keely was in a fragile state and we have other children who put their lives on hold willingly.
This time last years Keelys reserve to her health had decreased substantially, to us we seen it as a new normal. We didn't see her getting ready to prepare for her journey, we saw extra care required, increased ventilation time ( which we never wanted for her but she still had a smile on her face), increased physio and on our toes a lot more than we ever had to be. As long as that little girl had a smile on her face we had a smile on ours. We always had HOPE! So much hope that we thought we would celebrate Keelys 2nd birthday, we were not prepared for what would happen in the next 5 days. We were ready to fight and fight some more. We had heartache, we had sadness and we were scared to death what would one day be before us but we would never look a day into the future and we lived every day on a minute to minute basis. These 4 days we had ahead of ourselves we some of Keelys very best days. A lot of laughing, giggles, smiles, love, appreciation and most important dancing. Her nurses brought in music from their phones, closed the curtains, picked her up and danced, she learned some new moves, she showed her nurses, doctors and best friends some of her dance moves and within this time she even learned to raise the roof! She had everyone laughing all the time everyday. We looked at life and grasped it with both hands and these were the moments we knew how precious life was. A terminal disease wasn't always a terrifying thing, love, determination and lots of laughter got us through the darkest times, we were able to see past SMA and thoroughly enjoy our daughters precious life. I sometimes had to scratch my head because everything just became so normal to us that we would forget Keely had a disease let alone a terminal disease. We always remained hurt and always had sadness but we were able to bury it as needed. It was always close and at the surface but we had our little girl, we were happy and we gave Keely a good life. She enriched our lives immensely on a daily basis. She could learn anything after only teaching her one time, she was one smart cookie! We have many many wonderful, beautiful memories of her but moments like now they are in a fog, sometimes the good memories hurt more to think of because it reminds us of what we've lost and will no longer experience.
That day when I returned back from my day with Shaely I walked into Keelys room and she wasn't in her bed, I though as I was walking in I could hear her yelling but she wasn't there. I heard everyone laughing and all the nurses had stole her out of her room, had her behind the desk holding her.....she had seen me walk through the ICU doors and got excited! When I had walked toward her she had the biggest smile on her face with great big eyes excited to see me as she always realized when I was gone even if just for a few hours. She would make make noises like she was trying to yell and you could tell she was so excited. That girl knew what was going on at all times! She always had the biggest welcome for me, I rarely left her side ever and when I did she knew it, but as long as daddy was there she was fine! She really knew how to make her mommy feel special. We became such a huge part of the PICU that it was nothing for me and Keely to be napping, she would wake up before me, and I'd wake up to Keely not in her bed with just a note saying "hi mommy, just out in the halls visiting my friends, we didn't want to wake you <3 love Keely" and I would get up and go out and she was being shared by everyone or putting on some kind of show making everyone laugh. It made me feel so good to see how she made people feel and how people cared for her even though this was just their job. We always knew we were in a good place! Even then we have fear and comfort and pain and happiness side by side. Keely made that happen for everyone and always brought out the best in each person. These were our final days...... "Fear and love joy and sorrow, tears and smiles exist together. Life and death kiss each other at every moment of our existence" author unknown

Keely & Cheryl - This was Keely's nightitme buddy, always lots of cuddles

Keely & Katie - Katie called her "My Keely Kat"

Always lots of smiles with Katie <3

Keely & Christina - Christina always make ALL of us laugh <3

Keely & Deb  - Keely loved her Deb! Deb loved kicking mommy and daddy out of the PICU & Keely was usually okay with it!

Keely & Julija - Such a happy girl with her friends. She loved everyone and everyone loved her!

Keely & Hayley - These two loved each other! Hayley always made Keely do her paperwork....doesnt look like Keely mind. They always worked on the puter :) and this is what Keelys face always looked like too xoxo

Cheryl, Keely & Shelley - Always a blast with these two girls. Cheryl always cuddled Keely or visit her even if she wasnt her nurse. And Shelley always made room for Keely

This is just a few of our magnificent nurses that became our MAC Family and fell in love with our little girl as much as we were. Some pretty special people who we miss dearly xoxo

Miss you Keely Louise xoxo Mama