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