The guilt is because I am lucky that he is still here. I am lucky I can still look into his eyes and I can still smell his sweetness. I can touch his silky soft skin and kiss his chubby little legs and feet. I am lucky that he is still here because so many children have already lost their battle with SMA and their families miss them desperately. Yearn to hold them one last time, run their fingers through their hair, breathe the air they breathe.
The sadness is because even I know that the Ryan I know today isn't the baby I knew 4 short months ago. Ryan has good and bad days, but much of the time, Chris and I are jumping though hoops trying to keep him happy. With a limited number of positions and ways to entertain him, much of our day is consumed with trying to get him to stop crying. It is hard to know if he is just upset because of normal baby stuff, or because of other reasons or simply that he is frustrated too. But, the frustration for us is the same, no matter what the cause. It is so hard not being able to tote him around with me as I go about my day. I spend countless hours on the couch, not watching t.v. and eating bon bons, but helping him "play" with his toys, making his hand bat at them since he cannot move it himself. Trying to "think like a baby" and help him do the things he would normally be wanting to do if he could move. I even take his tiny hand and brush his fingers across my cheek so he can feel the love and the smile on his mother's face. (This may be equally for me as it is for him).
I am also sad because I can distinctly remember the first day I saw Ryan come out of his "preemie" shell of eating and sleeping all of the time back in February. It was an afternoon when my mother-in-law, Terry, came over to see me. Charlotte was home too and when Ryan was up, he spent some time in the boppy on the floor playing with us. For the first time, he moved his arms, examined his hands, tried to get his fingers in his mouth and really showed me that he was maturing. I was so excited that day. I felt that was a glimpse into the future. That maybe times were stressful, but at least his future was bright and he was okay. He would have a bright future, filled with lots of memories and his achievements in life would not be limited. I remember that day like it was yesterday.
Last night, I couldn't believe that those dreams were no longer possible. I couldn't believe that the little boy that I loved so dearly and had so many dreams for would never know them. I am sad that he will never know how much I just wanted him to be able to live life to the fullest. There was no doubt in my heart that he would.
I am baffled by how things changed so quickly. I think I will probably always carry the memory of this day with me. It was one of few times in Ryan's life that things felt "right".
The life I have with Ryan today is hard. It isn't that I wouldn't choose to do it, or I am upset with him for his fussy times, but it is still hard. I will do anything to make his days as bright as they can be, but I hope he always knows that I will always remember him as this baby, full of life, and endless possibilities. That is the baby I fell in love with. I still see him deep inside Ryan's eyes today... I see how much he wants to give back but can't. That may be the most heartbreaking feeling of all.
I didn't think I would be uttering the words "I Miss Him" so soon...