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

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

My Mom Lies

I found this poem that is narrated by a mothers child who has died. I couldn't find it more true. Every single day someone always asks me "how are you?" and for that split second I am always left wondering are they even going to hear my reply, do they really care? Or do they just expect me to tell them what they want to hear? And like this poem i either say " I'm fine" or " I'm okay". Then afterward I always feel like I am being dishonest to myself for not telling people " you know what....I'm horrible, broken, sad, lonely and I am angry with life" we've been dealt a crappy hand and how am I supposed to be? Most of the time if I express how I feel most become uncomfortable but I am being fair to myself and those are the times I feel composed because I am expressing my "normal" with howi really feel, when all the other times I get by with saying "I'm fine" and all that is doing is helping those people who are asking me feel normal. Am I angry at people and at the world? No; but it sure is hard to fit in when people don't want to wear your shoes in your uncomfortable, unimaginable world. I wish the word "fine" could be redefined to mean sad, lonely, broken, but At this moment I am putting one foot in front of the other so "I'm fine"

Our Favorite Lie - I'm FINE!

“My Mom Lies”

My Mom, she tells a lot of lies
She never did before.
From now until she dies,
She'll tell a whole lot more.

Ask my Mom how she is
And because she can't explain,
She will tell a little lie
Because she can't describe the pain.

Ask my Mom how she is,


She'll say, "I'm alright".
If that's the truth, then tell me,
why does she cry each night?

Ask my Mom how she is,
She seems to cope so well.
She didn't have a choice you see
nor the strength to yell.

Ask my Mom how she is,
"I'm fine, I’m well, I'm coping".
For God's sake Mom, just tell the truth
just say your heart is broken.

She'll love me all her life,
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.

I am Here in Heaven.
I cannot hug from here.
If she lies to you don't listen,
Hug her and hold her near.

On the day we meet again,
We'll smile and I'll be bold.
I'll say, “You’re lucky to get in here, Mom
With all the lies you told!"

-author unknown 

"it isn't for the moment that you are struck that you need courage, but for the long uphill battle to faith, sanity & security"

Home was never the same.....

On June 7th 2011 at around 11:30pm Keely left home for the very last time. She was having some difficulties on that evening and I will admit I thought she was going to pass away at home, I had not seen her in such distress and as her mommy it was tough to see her that way. I could care for her on a daily basis for her routine medical needs no problem, it eventually just became part of our everyday normal. It's when you realize in a moments time with the drop in her oxygen levels, her not being able to stay awake and her breathing distress is increasing that your not a nurse or a doctor, your just a mother....it is then that the weight of the world is on your shoulders to do what you can to save your infant daughters life until the ambulance gets there. I wanted to be by her side to comfort her in case she passed then and there but at the same time I have to get all her machines ready to go, talk on the phone to 911 and her pediatrician to find out what I should be doing because I remembered I did not remember asking to be a doctor. Of course I did what I had to do and I did it to the best of my abilities at all times. We were saved by the ambulance once again and the moment we walked into McMaster the weight of the world was lifted off my shoulders and I was allowed to just be a mommy again! That's all I ever wanted and their were times (few and far between) It was a relief to just throw my hands up in the air and hand the responsibility of Keely's life to someone else's hands. Sometimes things just became to scary for me and I didn't want to be responsible for her death. Imagine that.....you bring a precious, innocent little girl into the world already knowing that you will love and protect her her whole entire life. What you don't expect is when you become responsible for keeping her alive. Somehow I managed, somehow I put my fear and anguish aside because my little girl needed me. To this day I still don't know how I did it but I do know I would have done it for the rest of my life.
Our family at MAC always took such great care of all of us. What I loved the most is when I walked through those doors I was just a mommy and they took care of the rest. Not even realizing the stress I was under until the following day of admission I couldn't even step on my left foot without getting a sharp stabbing pain in my head and my shoulder, it was all the stress coming out of my body as this extremes load was taken from me and back in the hands of the professionals.
I never suspected June 7th would be the last time Keely would have been home with us. By the time she got to the hospital things had settled and she remained somewhat stable but still not knowing which way things were going to turn but we always had hope. Keely always surprised everyone and no one would dare say what they thought would happen. Keely made the rules and we watched, prayed and followed her lead. At this time she went from 8 hours off bipap (non invasive breathing machine) to 4 short 15 minute breaks a day, with oxygen always nearby....it was a big change in her requirements and a change in her reserve. This wasnt Keelys normal baseline but no matter what I always remained hopeful that things would change for the better because I'd seen her do it so many times prior. I would get down and discouraged at times for sure not being able to lock the worst but she could pull me out of that.... she was still here and she still had lots of smiles and laughs and was still making everyone laugh, this was our Keely and she always kept us hopeful.
I think of this night and following day from last year that I remember so vividly. It breaks my heart remembering how scary it was and how helpless i felt for my baby girl but I remember also feeling proud at how much courage and fight she had and how she made the rules as we fought just as hard right beside her. Very bittersweet moments as she was still here with us but it's also been traumatizing. How do you still hope for your child to be here with you but yet not want to see her suffer anymore? Our home and family has never been the same since she left home that night. We still shared smiles and lots of laughs over the next few weeks following this. Remembering this day she left it never crossed my mind that she wouldn't come home. We always found happiness with Keely, there were dark times and June 7th was one of them but miraculously again she proved us wrong over the next few weeks......

"Happiness can be found even in the darkest of times, if one only remembers to turn on the light" author unknown

Love you Bunns and we miss you everyday, every minute and every second! Xoxo Mommy

I'll Be There

Daddy please don't look so sad,
Mommy please don't cry
Cause I am in the arms of Jesus
And he sings me lullabies.
Please try not to question God
Don't think that he is unkind,
Don't think he sent me to you
And then he changed his mind.
You see I am a special child 
And I am needed up above
Im the special gift you gave him
The product of your love.
I'll always be there with you
And watch the sky at night.
Find the brightest star that's gleaming,
That's my halos brilliant light.
You'll see me in the morning frost,
That mists your window pane.
That's me in the summer showers,
I'll be dancing in the rain.
When you feel a little breeze 
In the gentle wind that blows,
That's me, I'll be there
Planting a kiss upon your nose.
When you see a child playing 
And your heart feels a little tug,
That's me I'll be there playing
Giving your heart a hug.
So Daddy please don't look so sad
And Mama don't you cry
I'm in the arms of Jesus and he sings me lullabies.

- author unknown