"Happy 1st Birthday Keely Louise!!!!"

How exciting is today! I started by not being able to fall asleep lastnight because I was excited for today. I woke up through the night about 5 times to check the clock because I was so excited for morning to come, I couldnt wait for the morning to get started so i could see your smiling ONE YEAR OLD face by looking into your crib and telling you Happy Birthday!! Me and Daddy started by turning on CHCH TV to see your happy birthday wish. Shaely and Jordan were excited to see you on TV again! i kept going in your room and checking on you because I couldnt wait for you to wake up. We got all kinds of text messages from your aunties and friends and Grandma Louise called to wish you Happy Birthday. While we were talking you woke up and had immediate smiles! As I stood over your crib and sang with a smiling face "Happy Birthday to you, Happy Birthday to you, Happy Birthday to my Keely Girl, Happy Birthday to you!...and many more!" You had the biggest smile and the happiest face. I started to cry immediately after but I was smiling while i was crying. I wasnt crying because I was sad it was because I was so happy that you are here for me to sing that song to you! I was crying and smiling looking at your face and you were smiling back at me. I said to you "Mommy's happy Keely, Im not sad you can cry when your happy too and I am happy that you are here for your birthday!" I just felt this sense of beign so thankful and i felt like so many prayers have been answered. I picked her up out of her crib and sang it to her many more times and she had a permanent smile everytime. Anyone that knows Keely knows that her expressions say a million words. She looked at me to say "Its my birthday you got your wish Mommy". I spun her around until we got to the living room and then I recorded her on the video camera and sang happy birthday again! I sang it twice and she just wanted her best friend (her soother) so I gave it to her and she was excited but didnt have the same big smiles the first 10 times I sang it. So I said "Smile if you want mommy to stop singing" and so she gave me a smile and I stopped :). A few days after we had received the results from her testing Scott and i were riding in the car and we were talking about everything. I said "I hope that Keely is here to celebrate her birthday" Saying this seemed so far fetched of a wish and I was basically thinking out loud. Scott grabbed my hand and said "That is amazing that you can say that and I am proud of you" and i asked "why do you say that?" he said "you have come a long way and for that to be your wish can be very realistic, you are setting yourself a goal". If anyone has sat in one of the many meetings we have had with doctors, our neurologist and social workers about our daughter you would know that for Keely to make it to her first birthday would seem like a miracle. So simply for me to wish this could have been a long shot. But this little girl of mine is a miracle and her strength and her fight has made reaching her first birthday possible. So here we are on Keely's first birthday starting at 11:24am! I can say that I am the happiest mommy in the world even though alls we have done so far was lounge around in our jammies with daddy and do nothing today. Its the most special day. We had Birthday Lunch from Yins just the 3 of us! Happy Birthday is Keelys new favorite song :). At around 5:30pm a big delivery came all i could see was a whole bunch of flowers, lots of balloons and a gift bag. Keely got beautiful flower arrangements from Dreamcatcher Fund, Auntie Alisha and Auntie Becky, she loves balloons! I couldnt have asked for a better day spent just relaxing and enjoying each other. How fortunate we are to have this little girl enrich our lives this past year and bring so much happiness to all of us. Cant wait for our all family and friends to help us celebrate our little angel turning one tomorrow! We Love You Keely Louise & Thank-You for the best year ever! Love Mommy & Daddy

Keelys Life Lessons

We received Keely's results for SMA Type 1 on June 29th, 2010. This was 3 days after I stood beside my sister on her wedding day. They were in definately 100% positive for this terrible terminal genetic disease. We sat in our peditricians office along with our neurologist to find out the news. It was what we expected the entire 6 weeks but a small small piece of me would think what if their wrong. That morning all I could do was cry as I layed beside our princess thinking of the test results. Strangely enought the worst part of the news was back in May. Again we ended up keeping this news a secret from our children including the rest of our family. Later down the road it turned out it was best for our children to not know until they had to be told only because they were able to enjoy Keely not knowing that she had anything compromising her life. After our meeting in May where we first learned of SMA i could only look at Keely and cry and feel sorry for her life and what was in her future. This little tiny human being had no control what would happen to her and neither did we.  I remember laying in bed thinking I dont want to be sad! Will I ever get to a point where I  wont feel sorry for her or for myself. I couldnt see it, I couldnt see an end in sight. I would go to bed crying, wake up through the night crying, wake up in the morning and cry. It wasnt until after about a month of feeling this way of being sad, confused, angry and absolute heartache that I would look at Keely with my tear filled eyes and she would smile at me and examine my face as though to say "Mommy why are you so sad?" Im sure she was doing this back in May also but I couldnt see what she was trying to say at that point, all i could feel was heartache and so many questions of why? She would wake me up by talking and I would look in her bed beside me and she would give me the biggest smile and be so happy to see me and of course all I could do was cry. Days would go on and this was always her same reaction. I thought why would God send us this beautiful baby to love and cherish if one day he would just take her away so soon? She was so happy and she had a good life and parents and siblings who cherished her beyond love!  Before May we would play, sing, dance and she was wondering what happened to my fun mommy. Her smile would begin to make me smile even if I was crying. One thing stuck in my mind the day we received her results and it was Dr. Meaney saying "Her brain functions at 100% percent and it will be her body that will betray her, but the fortunate thing is she is small and she does not and will not know anything is wrong with her, she will just be happy!" It took me some time for this to make sense in my head because at this point I wouldnt let any positive thoughts enter or alter my way of thinking. I thought this is just him trying to ease the pain and make us feel better. It wasnt until I would see these reactions from her day in and day out....she was just HAPPY! He was right, she doesnt know anything is wrong with her, she doesnt know her life is compromised she is just happy and she wants to continue her life the way she has known and learned from mommy and daddy! I started to get tired of crying and being sad and with Keely being so happy I thought to myself, she doesnt want to see me crying and sad and I do not want her to see me that way. I told myself, if she only has a certain amount of time on this earth and im the one who has been chosen  to show her all of these wonderful experience then how can I do that crying and sad. God only knows how long she has with us and I want to make her life experience a happy one, I have been given the gift of her and she has been given the gift of us. With such a terrible underlying illness I would never have thought I would have ever let these thoughts pass through my train of thought let alone be able to take control of them and carry on through this positive life lesson. I chose to not let the disease of SMA hang over our heads and sum up my daughters life and what she is. Keely at the time of this change in my emotions was only 6 months old, but yet just through a simple smile, giggle or just the love in her eyes has been able to teach and tell me with such simple gestures that I need to treasure and live in the moment, dont take any one day for granted and I learned the true meaning of love. Ive always knew how to love but there is a different love that is deep deep down but not everyone can reach it or experience it, it can only be reached through lifes hard lessons and it isnt until then that you learn that you need to dig deeper. Instead she taught me to look at the then and now because so often would i think of the bitter end of her life and play it over and over in my mind like a bad dream. I was catching all the black butterflies instead of the colorful ones. I wanted only the colorful ones because thats what Keely was to me. She taught me that I needed to enjoy everyday of her life and it was because she was and thats what she was here for. My mother-in-law told me one day very early on in Keely's diagnosis that her mother always told her that The Creator sends messengers here on earth and they are only messengers, they come here to see the earth and go back to tell him everything they have experienced. This stuck in my mind forever and strangely made me feel a little bit good in the sense that this is where Keely came from and and if you come from the Heavens you are an angel, this is why I consider her my little angel! When Keely does tell her experience on this earth I want her to have only wonderful things to say and I want her to feel a sense of serenity. If I was chosen from this higher being above to see how I live my life and how much I deserve to have children I will prove that I will be the best mother no matter what the circumstances, I will quit living my life so I can live hers. So many people tell me how strong, brave and how much I am admired for fighting back and being able to pretty much stand without folding in half... but I have not done this willingly. It has come with a fight and taken me mind over matter and no matter how much I can carry on and do what I need to do for my daughter I will NEVER ACCEPT the fact that one day she will be gone. I will NEVER ACCEPT that she was given this terrible disease. I will however Love her unconditionally, live each single day of her life to the fullest, I will kiss her a little longer every single day, hug her a little longer every single day, sing, dance and laugh with her every single moment for the rest of her life. I thank Keely for choosing us as parents and I hope i am providing the love, care and compassion that she was in search for <3

The Truth Behind Her Angel Face

You always hear the expression during a pregnancy "It doesnt matter if its a boy or a girl I just want a healthy baby" So many say it but sometimes its just words and mainly what your supposed to say when your pregnant. I've said it with my first daughter and my second, but you as a pregnant woman just assume that your baby will be healthy. This is until you have a baby that isnt healthy do you really grasp what your saying and the true meaning of giving birth to a healthy baby. In my blog "An Angel Wrapped In Pink" this is what I thought. To me I had an ideal pregnancy other than the fatigue and occasional nausea, I had only gained 31 pounds, had 3 ultra sounds which all seemed to be perfect, had a 4 1/2 hour labor and delivery and had the most precious daughter a mother could ask for. Other than 2 or 3 slight colds Keely came down with within her first 5 months of life she was perfect in every way. It was until around Mothers Day 2010 that Keely had just got over a cold a few weeks prior and it seemed to make her really weak. I figured it was just the virus that got her down. Her head got weak to hold up and we were almost having to support her like a newborn baby again. 2 weeks later she was admitted into BGH for breathing distress. No amount of inhalers and Ventolin were helping during that stay and it just so happened the peditrician that was on-call happened to be from McMaster Childrens Hospital and found out later he was from the Neurology team at Mac. He continued to tell us after a complete physical and what seemed like 100 questions that he suspected something more was the cause of her breathing issues and he wanted us to see a specialist at McMaster. Instantly our hearts sank into our stomach and our stomach came up to our throat. One of the scariest things a parent can hear about their new baby is "something may be wrong"! We were discharged after 3 days on a Sunday and by Thursday we were driving down to McMaster Children's Hospital. I hadn't ate a proper meal in those days inbetween as I was worried sick in what could be wrong. I had made up my mind in those few days that I was ready to face whatever it was (with help from Scott) and do what I had to do for my baby. If it was her heart or any type of surgery she would have to endure...it would be hard but as long as she would be okay after i could face and deal with what had to be done. I went into this Neurologist Office with 80% positivity that we as parents could face this together. My mom came with us that day and as we sat and waited in that waiting room it felt like an eternity. We were under the impression Keely would have a CT Scan done that day. After about an hour wait we were called into Dr. B Meaney's office. First we started by answering another 100 questions about my pregnancy, my labor/delivery, our genetics and Keelys life in the past 5 months. Following that he took my baby out of my arms and examined her flexibiltiy, muscle tone, strength, reflexes etc.....The entire time she talked to him and smiled and used her magical eyes to draw him in just like she did with everyone she met. After about an hour spent with the 3 of us he took some time away and before he left he said "I will be back and let you know what I think is going on" after almost another hour he came back and continued with this....."Keely's brain is functioning at 100% this tells me cognitively and mentally there is nothing wrong with her brain" (which at that time was a huge relief). He continued with explaining his concern of low muscule mass, muscle weakness and the support she still requires and that she is at a 2 month old infant stage opposed to a 5 month baby. He then said "From my examination she may have a disease called Spinal Muscular Atrophy Type 1". As Scott and I sat there and waited for him to continue telling us we had no clue what this disease was nor had we heard of it. He said judjing by your reactions (which was no reaction) I am assuming neither of you know what this disease is. He then said "If I told you Keely had Cancer what would your reaction be?" I said I would be devastated. He said well im sorry but this is much worse. I wasnt sure if I was hearing him correctly and my voice left my body as I sat and listened. He continued to tell me my worst nightmare, something I never thought would happen to me, something that only happens in bad dreams, something that only happens to cruel people. He said "As Keely grows and progresses she will never reach any of her milestones. As she gets older the disease will progress and weaken all of her muscles. Ultimately with her respitory system being her biggest muscle this will also weaken over time and if you cannot breathe you cannot live. This is what will take her. Babies with this disease are lucky to live to age 1 or 2 at best. Scott and I sat in 2 chairs in that office and all we could both do was cry, I couldnt believe what I was hearing and I could not speak and didnt have anything to say, what do you say when you are told your precious baby will one day pass away and theres nothing you can do about it. I remember Scott asking "Will she ever walk?" He replied with no, Scott broke down, grabbed Keelys receiving blanket and buried his face with tears. This whole time I held Keely in my arms like I was waiting for her to tell me its okay mommy this isnt true. I remember looking down at her face and her big beautiful eyes looking up at me and she had a big smile on her face. My eyes were filled with tears and her face was blurry. Scott was asking questions and I couldnt hear anything. I wanted to scream and flip out and drop to the floor all at the same time but I couldnt move, I couldnt talk and I was even having a hard to crying but yet tears were falling. I sat down and held Keely tight and Dr.  Meaney said to me "Tammy your not saying much, what are you thinking?" I had all these things to say but I still could not speak, he asked me a few questions and I could only shake my head yes or no. The only words I said in that room to him was "how sure are you that this is what she has?" He said "80% sure". This was the 80% positivity I had walking into that hospital that day that was swept out from under me, thrown heavily on my shoulders that I would continue to walk around with day after day. After the doctor left Scott and I cried and hugged each other with Keely in the middle. He got my mom from the waiting room told her what was said before she came in and she looked like a ghost, of course she was in shock as we were. When I seen her I cried, I stiffened up and began to lose control. I told her I cant live anymore, I cant do this I cant continue to live without my baby.  Why would God do this!! She said "Tammy you have to, you have to take care of her your her mother. You have Shaely to take care of you cant be selfish you have a daughter that loves you. I knew she was right, its the instinct you get when life doesnt go as planned and you cant imagine having to face this. We sat and cried and I didn't want to move, I wanted to close my eyes and wake up from this dream. Our next step was to go up to the lab and have blood work done. As we walked through that hospital I felt as though I was being pushed from behind to keep moving like I wasnt doing any of the walking myself, I felt like a zombie. We got to the lab and of course they couldnt do her culture because it was to late to be sent out. Our results were going to take 6 weeks. We had to come back the following Monday to have the testing done. That drive home from the hospital that day was the longest ride in the car ever. I didnt say one word on the way home, I felt like I had the life sucked out of me (which I did). Scott would talk and I still could only shake my head yes or no. As we dropped my mom off at her house I went in to wipe my face from crying before we picked up our other children. I broke down once again and could only scream and cry. I knew this was bad, i knew it was terrible what was happening but you really know its horrible when you see your mother cry and dont know what to say to comfort you.  I wanted her to be able to tell me it was okay and that Keely would be alright and that I could get through this. But she didnt say it because she didnt know and it wouldnt have been true. Mothers can always take the pain away or so I thought, but this time it couldnt be done. We picked up our children at their Auntie Loris and we couldnt hide the pain. We told her and she cried with us and all I remember saying was "Why would he give her to us if he is just going to take her away from us"! Nobody could answer me and no one still has. That is the golden question....why? why? why?! We would spare our other children's feelings for months after this only to tell them Keely was having testing done, they asked if she would be okay and all we could say was hopefully. We had our children for a 4 day stretch and I asked myself why it worked this way, why our kids had to be here while we dealt with the heartache. I couldnt get out of bed, I couldnt look at Keely without crying, I couldnt look at Scott without crying, I couldnt eat, sleep and on top of all of this we had to pretend nothing was wrong for the sake of our other children. I was in and out of that bedroom 50 times in one evening to run in and cry, scream into my pillow, cry on the phone to my mom and it took everything in me to not throw a fit....then to wash my face and have to come out and pretend nothing was wrong. Scott was a rock on this day and many days after.....he took care of me. I lost 10 pounds in that first week, 5 more the following but if it wasnt for him it probably would have been 30. He would bring me food in bed or just sit there and talk and we would cry together. I went into a depression mode and could only think about the end of Keelys life, the bitter sweet end. I talked on the phone to only few people, one being my mom and my sister Becky. My grandmother passed away November 27th 2008. I remember my mother saying through her tears "Grandma will take care of her" and all i could say was "But I want her mom I want to take care of her, I want her here with me". I know this is true but that was my mom being a mother trying to ease my pain. I would talk to my sister who was getting married in a month and I was her Maid of Honor and she would getting really quiet while I cried on the phone only later to find out she was crying on the other end of the phone but didnt want me to know because she was trying to be strong for me. This time in her life was something you one day dream of happening and the time in my life i was having was something you only want to dream of and wake up and hope it was only a dream. I had the best man beside me anyone could ever ask for, the best dad for Keely, the best family on both sides but with all that it still couldnt fix anything it would only ease things. Without them I wouldnt be where I am right now. My biggest lessons learned were not from a book, a counsellor, a friend or from family.....My biggest and greatest lessons learned came straight from Keely herself.....This little angel of mine has a very old soul which shows seamlessly through those magical eyes I speak of and her beautiful smile. Keely was an angel after all... She is who I will learn my greatest lessons from..........

An Angel Wrapped in Pink

On December 14th 2009 a tiny baby girl angel weighing 7 pounds 6 1/2 ounces was placed into my arms at 11:24am. At this time I didn't know she was an angel only that she resembled one! She was perfect and looked just like her daddy. It had been 8 years since my first daughter Shaely was born so everything was all new to me and I would have to learn how to care for Keely like she was my first all over again. Little did I know that along the way Keely would be teaching her mommy and daddy things that no one ever thought a tiny baby could posess. Keely is my 2nd daughter and Scott's first, following 2 sons! Instantly she became daddys little girl and at that moment he knew that he would keep Keely under his wing and protect her always as fathers always do with their daughters. We brought her home 2 days after she was born and from there on in our earth began to revolve around this little angel. She had been brought into a loving family of a mommy, daddy, 2 brothers and 1 sister...she was the centre of attention! Keely would celebrate her very 1st Christmas 10 days after she was born and she made that Christmas of 2009 one of the best ever! As days went on Keely grew but she grew very slow. I didn't mind this as I loved babies, any babies and I especially loved tiny doll like babies just like my new little one. All the while Keely had my undivided attention and my world was now hers and we became one. As Keely grew to be a few months old she was starting to smile, talk and her eyes always had such a huge impact on everyone including total and complete strangers. On every outing no matter whether we went to the grocery store, hockey game or just out to dinner she drew people into her and brought alot of attention. Most would comment on her eyes, her beautiful eyes and how beautiful she was. Scott and I both know how much attention babies can bring but with Keely it was almost unreal with the attention she got from people. We would often talk about comments people would make and how wierd it seemed. At 5 months old Keely smiled, talked, socialized and ate like any other 5 month old would. She got to where she could hold up her head and her movements were never rapid or hyper like some babies but mature for her age. Our life was really happy and almost surreal at times. I've learned and seen that babies always bring happiness, joy and enrich peoples lives and this is just what Keely had done to ours! Her future was our destiny, Or so we had hoped.......