Only God Knows Why....

As I sit here today, one year later and reflect on our time with Keely as if all of this has just happened yesterday. Everyday this past week I can remember what we did each day in her final days. Like a dream everything is so vivid right down to the way she feels, her touch, us holding hands or her head laying on my shoulder. I hate that an entire year has gone by since feeling and seeing all of this and it makes me feel so far away from her. People will say "she will never be far away, she will always be in your heart"....im sorry but that doesnt ease my pain or make me feel better. If my Keely is not here and not in my arms we are apart and unless I can touch her and feel her there will be nothing that compares. Its one whole year of playing, laughing, holding, touching, hugging, kisses and everything else a mother shares with their child on a daily basis and I cant have that with her. As the years pass on and on I will always just get further away from all of these special things some people may take for granted on a daily basis.
On this day last year we woke up just the two of us, we actually both slept in that day. We got up, did her normal routines like physio, feeds, wash her up, a little bipap break and some strawberry shortcake and mickey mouse clubhouse. I jumped in her bed, held her hand and we watched tv. Keely always loved snuggles and me or her dad laying close to her. That day was just another day, things were looking great, Keely was happy and smiley and always really funny but it was a more quieter day than usual, only a few visitors. Keelys little cousins came to visit her and she laughed and played and she liked to show off at all the things she could do like dance, fake cough, winks, monster noises so she basically did all of these things but it was mostly dancing on her part. She liked putting on a little show and would always wait for people reactions and then laugh once everyone in the room was laughing. She had wit and people automatically fell deeply in love with her. Thinking back to this day I remember leaving the room to shower while we had company and someone to sit with her. Im sure at any time during that point she was never bored but today, I feel bad for leaving to have a shower. I wish someone would have told me that Keely would pass away the next day because that was 20 minutes out of my day I lost with her. Something so small and minute I feel guilt for today. I left the hospital (a very rare occurance) to go and grab some lunch and I came back and ate it, another half hour I can never get back. I guess for me things apparently had to be on the straight and narrow and looking good for me even to leave that room. This is how great we thought she was doing, I remember actually thinking....at the start of next week I want to have a family meeting and make a plan to take her home. After lunch just Keely and I had the day together, on her next bipap break I put her in her stroller and we went for an hour walk around the hospital just her and I, we went to the gift shop and I would show her all the toys, she always liked her walks and the change of scenery. She was much to intelligent to be cooped up between four walls all day long. We sat at the corner cafe and had a drink and we played and I talked to her all the time. We just walked and walked until it was time for her to go back on bipap and have some physio. I remember these days so fondly....days of pain and days of happiness and beautiful memories. Her reserve had changed drastically, she was now requiring 20 hours of bipap a day, but she became content and still remained happy. We realized it was major steps backwards but for us we looked at it as adjusting to a "new normal" and she was requiring a little extra care. We were told from the very beginning that caring for a child with SMA was a heroic task and without even realizing we were in over our heads and knee deep in SMA. It never EVER occured for me to stop as long as she remained our happy little girl. We never wanted her on 24 hour bipap because she was never fond of it, we relied on Keely for the answers because she never failed to let you know when she didnt like something (just like her mama!). We left the grey areas up to her and less than 24 hours later she let us know she had had enough!
This day last year was Shaely and Jordans last day of school. Shaely and Jordan couldnt wait to be all done school and spend the summer with their sister, no more missing out...they got to wake up in the morning and spend all their time with her. Normally Scott was at the hospital first thing each morning to be with us. The unfortunate thing is regardless of what we were going through and facing our life was never drama free, there was always something to deal with that was unnecessary and unfortunately Scott dealt with "drama" that day instead of spending his daughters final healthy day with her. It was a nuisance but like it or not drama's always been a part of our life.  He eventually made it to us at 6:00pm that day and his little girl was very happy to see him! Scott had been staying at home with the kids about a week and a half prior to this just to give them some stability at home as the Ronald McDonald House was closed for renovations. I slept in bed with Keely and he stayed in a resident room at the hospital. We had a counselling appointment this evening for one hour just 2 minutes from the hospital. When we left Keely was fine, she had a great nurse (as always) watching over her while we were gone. She was happy, smiley and playing, still no red flags. We left for our appointment, talked to our counsellor about how much better Keely had been doing as the few weeks prior to this she had a couple of crashes where we had to call the family up twice as we didnt think she would pull through. It had been a good week since she had deteriorated but came back to her same level. As soon as our appointment was over we right straight back to the hospital.
As soon as we walked in Keely was asleep, within less than a minute I had noticed her heart rate was up about 25 beats per second more than normal. I asked the nurse watching her what had happened in the last hour as she was fine when we left. Everything with Keely was a waiting game, nobody had any idea and we though maybe something was hurting her, there were no signs of distress in any way shape or form. When she woke up she was a little fussy which was unlike Keely as well. Her normal heart rate was 125 while she was awake and it was in the 160's which really had me puzzled. As the night went on her saturation levels (oxygen) would give little dips, they wouldnt stay down but by the time we got up to suction her it would jump back up to normal. Normal oxygen saturation was 95+, it was okay if she was in the low 90's but it was usually a head scratcher if she was. I always panicked but everyone reassured me she was fine. Now anything below 90 we were jumping and anything below 85 and below she would start to turn a shade of blue or grey. So her oxygen levels kept us on our toes all night. She had us all kind of scratching our heads but still no real red flags. Of course we were worried but we didnt think the worst....yet.
One of Keelys Best Friends Cliff was her RT for that night. As many of her RT's were spectacular, Cliff had a strong bond with her from her very first visit into Mac a year prior. So rest assured we were assured having Cliff on. As soon as a beep or noise went off on any of her machines Cliff was in the doorway or at her bedside doing what needed to be done! By 11 o'clock things were staying the same, lots of dips in saturation, Keely was very irratiable and not feeling well and she was having trouble sleeping. At about 11:00pm her Oxygen was to unstable that Scott did not want to leave us just to be on the safe side. I remember at this point getting worried and having that nervous stomach feeling that feels like you need to be sick and it hits you in a second. We knew something was up but my first thought was that she was maybe coming down with something or her lung(s) were recollapsing. Still no major red flags, not for what later happened in the early morning hours. We stayed up till about 3:00am, Keely got a little bit of rest as we sat and chatted with one of Keelys best friends Cliff and everything was quite calm. Keely was still dipping but was coming back up on her own. For the most part it was nothing Scott and I werent used to, we did alot of her care in the hospital. by 3:00am we decided to get some sleep. I crawled into bed with Keely and snuggled with her and Scott slept in the cot beside us. Of course I cant sleep on a good night so I basically layed there and held her hand and rubbed my face close to hers and enjoyed the moment. I prayed every single night before sleep and normally about 10-20 times a day. It was called her bedside tug of war. I would just start to drift off and there again her oxygen alarm was beeping, I would get up, give her a bit of a suction get relaxed and it would go off again. This continued the rest of the night.....but I was in my bed with my baby girl and everything that needed to be done was getting done. For us it was just a little of an unstable night that happened time and time again. By 4:00pm Keely required some oxygen after not have been on it for a week and a half. Naturally this upset me because again we were going backwards but yet again we did what we had to do. I layed in bed, calmed her when she fussed and didnt once care about my lack of sleep and that I probably wasnt going to get any that night. My baby girl need her mama bear and I was right beside her humming a song in her ear, holding her hand and telling her everything was going to be okay mommy and daddy's here.............

"As a butterly graces our lives with one moments fragile beauty, so too has Keelys presence blessed you, and those that surround with their short life and unique spirit. May you find peace and joy with each butterfly that passes knowing that Keely lives on in the heart of all that she touched" - Sent to me by Keelys nurse Natalie <3