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..........