Cloudy Days

I know many times ive mentioned how I dont let SMA hang over my head, and for the most part I dont. When you have the most precious, beautiful baby laying down for 99% of her day (still smiling mind you) unable to walk, speak or play and then you go for a ride in the city and see a grandfather walking on the sidewalk on one of the many beautiful days of spring yet to come with his little grand daughter no more than 2 years old holding her hand. Shes wearing a little sun hat with wavy little wisps of hair curling underneath it, little blue jeans with heart shape pockets in the back and a sweet little pink spring jacket unbuttoned because the weather is now beautiful that she doesnt have to bundle up. She is looking around admiring the sounds, the sites and the feeling of independance beneath and around her. Naturally the first thing i'm going to think of is my Keely and how I wish that could be her. It chokes me up and I try really hard to not cry imagining thats my Keely and I walking down the street. I cant help but say aloud "That really bothers me to see a little girl like that because I wish it was Keely" and then I hold back my tears because in my mind and my dreams I can imagine it and see it so plainly. I want to see her run and laugh and giggle out loud while she tries to maneuver the akwardness of walking, running while balancing and the excitement of doing something new and feeling accomplishment. I see a glimpse of this for a matter of 30 seconds and it hits me hard. At times I wish my imagination would disappear and I dont think of what could be or could have been. These are my trying times, things I struggle with and have a hard time coping with. In the beginning of it all I couldnt see a pregnant woman without my heart breaking because she had a new life inside of her and it more than likely would end up a joyous time in her life and a future. I stayed away from malls (and still do mostly) and busy places where little children are because I cannot handle at times the loss and the compromise that we have and are facing, everything we are missing out on with the joys of babies and children. I've gotten better but sometimes it just breaks my heart to face the reality of it all. I still find myself rushing out of places because I see toddler after little toddler walking, laughing or talking and some days I just cannot handle it. I wish Keely would throw a fit on me in the middle of a store or run away from me to where I have to chase her. These are moments some mothers dread  but when you dont get this from your child you wish you could even just for a minute. If we are ever out its never with Keely because our safe haven for her is at home, this is our and her comfort zone. Keeping her away from crowds of germs or avoiding an emergency in public or curious stares. So if were out its Scott and I alone or me with someone else or by myself, one of us always have to be with her or a nurse. On one hand her not being there with us and me seeing all these children and babies makes for alot of sensitivity. The majority of days I am okay and I just know when to change my track of thought or focus on something else but theres just some days like today that I have no control over it and it just gets the best of me, theres really no simple way to put it! Its not something I am proud to share of my own personal feelings but its my life and if typing it out is a touch of a coping mechanism then thats what it will be. My Keely is my Keely and could never be replaced by another however, its completely normal for me to have a cloud over my head once in a while, cry to myself or someone for a moment, to dream a dream and wish that my beautiful daughter could walk, wrap her arms around me, tell me how much she loves me and stay in this world with me forever! Im normal, Im a mother just a little broken at times..........

Happy 16 Months Keely

As I sit here and reflect on the past 5 months of being home from the hospital I feel a sense of pride, happiness and so much effort and time that has been put into those months. I would like to say effortless but its more acceptance that it needs to be done and this is, has and will continue to be our normalicy! Keely turned 16 months old today and I think back to November and December and how I was so afraid we wouldnt make it to my birthday with her, then her birthday and Christmas was just out of the question. I couldnt look into next week because it seemed so far away. I was actually living my life on a daily basis and enduring which each day had to offer. I was afraid to look ahead because as time goes on its a double edged sword, on one hand we get to see her grow and enjoy all this time with her but on the other as she gets older she weakens and its just that one day closer. Is the glass half empty of half full, thats a decision I have to make most days and for the most part its half full! So here we are 5 months later and 4 months past Keelys life expectancy! I was alone driving the other day and just felt so happy. I thought to myself I am so happy with my life then started to think to myself "how can I feel this happy with Keelys life being compromised and the extra load we carry on a daily basis, how did I get this far?" I know the biggest reason is because she is still here and she is the brightest most happiest little girl but aside from that almost 11 months ago I would have thought of being in a depressive state. Ive always tried to look at the positives in life and it can be a challenge at times. Living with SMA and trying to give my baby a beautiful life has made it easy, it comes naturally. With that being said it doesnt come on a daily basis but for the most part the positive makes itself available and its easy to recognize. Before I had to look for it, convince myself it was there and then remind myself. Now its just there. Im not trying to come across as SMA is wonderful  but we are making the best of this stupid disease between Scott and I together. We have our down days. I can get on the wrong train of thoughts and think the worst and I do have my crying days, human nature......I also have Scott there for balance. Not very often are we feeling the same way at the same time, I presume it was done this way to help us maintain sanity and of course for our life to balance. Scott and i are each others biggest supports, we were close before and it has just made us that much closer to one another. To me my baby is not sick, weak, unable to eat or in any way affected by a terminal disease.....She is 16 months old, she is beautiful, smart and the most perfect baby to us. I do not consider it denial, I consider it a mothers love....you only see the good in your child and I decided months ago that SMA and a terminal disease was not going to sum up her life and ours. Although we deal with it on a daily basis.....Life is what you make it! Happy 16 Months our little Keely Bunns!