Dear Ashley,
Your birthday is coming soon, and I seem to have realized that we have to celebrate it without you. I cry for so many reasons these days, but today as I try to get the energy to bring out your baby book, I am shedding more tears of remembering. It would be nice to finish your baby book, and have it to reflect on when we visit your grave. Just thinking about your baby book, brings on the reflections.
I remember the day you were born. After hours of labour, you suddenly came so fast that you had a moment where you stopped breathing and your heart rate dropped. I remember hearing the nurse call a code, and of course, I knew exactly what that meant. We prayed for you immediately. Within moments of your arrival, you were already lifted up in prayer. You rallied quickly and when we went home with you, we had already forgotten the minor blip.
I remember the first couple weeks, as you struggled to latch when I nursed you. I thought you were teaching me patience! I could not pull your head toward me, because you would arch away from me if I touched the back of your head. Instead, I would position you on the nursing pillow and lean in, waiting quietly until you were able to start sucking on your own.
Those first two months of loving you without the knowledge of your disability, was a blessing. I always had uncertainties, but also felt that I was hormonal and paranoid. So, I quickly put aside any feelings of dread.
When you were two weeks old, we saw your pediatrician for a regular appointment. I remember when he asked me if I had any concerns. I spoke an immediate, 'Yes', and then followed it by shrugging and stating that I had nothing concrete to base my concerns on. I told him of the eye flicking and of your back arching away from me when I tried to feed you. We decided that babies do all sorts of strange things in the beginning, and we would keep an eye out for anything else.
I remember trying to position you for a "One Month Photo" and commenting on your incredibly floppy head. I look at the photo and see your head drifting down to the side, and remember how long I tried to get your head into a nice position, and how baffled I was that you had absolutely no head control. You were a limp noodle for the first year of your life. Of course, it all became clear when the more obvious seizures brought us in to emerg for the first time.
That happened right after Easter, when you were two months old, Ashley. That was the beginning of a new normal for us, and I hardly even remember that first two months of blissful ignorance. But I do know that the blessing of knowing you without labels gave me something I needed when they told me that you would be severely handicapped. The word, 'handicapped', scared me and I didn't know how to deal with that. Then I looked at you, Ashley, my beautiful baby that I already loved and accepted just as you were, and I knew that no 'word' could make me stop loving you.
I remember sitting in the hospital room, staring at you in my arms and repeating, "I love you right now and always." All the negative power held in the word 'handicapped' was eliminated when I focused on loving you in the present. I love you still, Ashley.
Love,
Mommy
Where does that leave me now? I don't have her to hold anymore. What do I do with my tears and my longing?
Although I do this imperfectly, I will try to follow what faith has taught me in the last years. I will offer up all my suffering and love to Jesus. He knows me and understands me perfectly. I can cry out all my hurt to Him, as often as I want, and he will never grow bored or irritated. His merciful heart soothes my soul and eventually brings me back to the present, fully nourished and ready to love others with the power of His love. If suffering leads me to love, then I must accept it gratefully. But I am no saint, it is only by prayer and the power of God that I can be changed in this way.
