1 Year of Tears, Fears & Smiles

This morning as I lay in bed awake the first thing I think about is one year ago today at this time we were sitting in a neurologists office at McMaster Childrens Hospital waiting to find out what was keeping our precious daughter from holding her head up on her own at 5 months old or reaching in the air and grasping a toy. This is the day we learned all about Spinal Muscular Atrophy Type 1. I think back to this day often and it is the darkest days of my life as a total nightmare. The feeling of shock taking over your body. Like the inside of your body is expressing what the outside should be. The hurt, sadness and anger is fighting to get out of you and you feel like your going to drop to your knees, but you dont, you feel like your going to scream at the top of your lungs but you still dont. And all your doing is standing there holding your 5 month old daughter in your arms looking at her smiling face through tear filled eyes that are also having a hard time falling which is only making her smiling face look blurry. As you look at her you want her to tell you that its not for real, that it cant be for real because she is smiling and happy. This was the worst day of my life! I remember having to walk around in the hospital after to get blood work done for her testing and for the life of me I cannot remember where we went in that hospital. Having been admitted for respitory distress 4 times since this day I couldnt find the place if I had to. The feeling I had that day is a feeling I wish on no one. If you would have asked me a year ago today what I would be like in a year I would have told you I would have been in a deep depression and possible a curled up ball on the floor. I figured it would have consumed me to the point of no return. For the first few months it did until of course I realized that someone was relying on me to show them happiness. I decided to enjoy what life my daughter had to live. In the past year I have experienced almost every feeling you can possibly feel. We have come close to losing her on more than one occassion, we have had acute eposides where we had to act fast and then your heart races and you want to cry when its all over with. My life seems like an oxymoron at times. Ive felt fear, sadness, hurt, anger, courage, loneliness, determination, scared, hate and believe it or not happiness. Most people would say to add Strong in there but thats one feeling I cant agree upon. I believe that being Strong is a feeling that you decide you want to have  and decide for yourself to show and i didnt want any of this. Courage made that list but "Strong" its not something I want its just something that showed up. A good word to replace this is "Mother". I am not being "Strong" I am being a "Mother" Its what most mothers do for their children, you just do what you have to do, its not because you are "Strong". When someone says "Tammy you are so strong" To me that means I have accepted Keelys disease. Yes I am fighting with it on a daily basis but no way have I accepted that Keely has to live like this, no baby should have to be suctioned, wear a bipap ventilator on their face while they are sleeping, have an oximeter attached to them 24/7 or be forced to cough 4 times a day. I am being a mother and I am a person who can barely overcome someone elses hardships and when I have to live these hardships on a daily basis its because I decided to be the best mother I know how to be. This past year has been the hardest but yet its been the best. Keely has brightened our world so much and created so many smiles in happiness in all of us. If she can be so happy and content whether she realizes there are things she cannot do, it just makes it that much easier for us to see enjoying her life. Before it bothered me to see other babies, toddlers and children doing the things they can do, it still does but only from time to time. I do imagine going for a walk with her and see her owning the world around her, or playing in the park and catching her at the bottom of the slide and i'll have to admit at times it makes me smile but at times it breaks my heart. The past 3 weeks as we dealt with her having two partial collapsed lungs and caring for her a week and home and 2 weeks in the hospital. I couldnt help but find myself thinking at this point in her life I should be paranoid walking behind her as shes walking or running around trying to find her balance and ready to catch her to avoid a fall or bump but instead im watching an oximeter and running to rip the bipap off her face to suction her and flow a large amount of oxygen to her nose as her Oxygen saturation drops to 50 while shes turning different shades of blue. Its an unfair situation for me as her mother and her as a baby who could have had a whole entire life ahead of her. Alot has happened in this past year both negative and positive. Over looking the past year we have met many many people at the hospital who have become a big part of our life and made many friends, we took a little family vacation where Keely squeezed into her little tiny little mermaid bathing suit with a ruffled waist, she got a bit of a tan from the hot summer sun, we seen her for her first Halloween as a little kitty kat, we celebrated my 30th birthday with her, her 1st birthday with our entire family and close friends, her 2nd Christmas as she licked and opened her soggy Christmas presents, celebrated her 2nd New Years Eve with her, Valentines Day, Her Daddys Birthday and Easter to see her get annoyed at her Bunny ears! All of these little holidays and occassions were that much more special and memorable because Keely was here. Alot of these occassions at times I had always wondered if she would be here for them. Its been a great year..... Happy to say that the positive now out weighs the negative. We are in a whole different world than everybody else that surrounds us but we are making the best of it.  I cannot imagine my life without Keely even though I know one day that day will come but for now I am just going to enjoy the greatest gift I have been given in the most beautiful package possible......A Beautful Baby Girl to Love & Cherish.