continuation

(November 1999)

Yesterdays comments were very appreciative and I thank you for your kind words of empathy, sympathy and compassion. I don't know if it's the time of year or what it is but I tend to ponder motherhood. I ponder my role as a mother. Aaron's mother. I think back of when he was small and tiny and all the expectations I had of life. I remember a dream I had when I was 5 months pregnant. I wa dreaming that I was giving birth and the baby was born and the first thing I noticed was the dream baby didn't have any legs. The first thought that came to my mind was "what am I going to do with a baby with no legs?" A voice replied "love it." Little did I know the signifacance of this dream until April 15, 2003.

From that dream forward I have loved that baby with my whole being. Even when it hurt to love him, when I wasn't sure he'd live to see 6 months old let alone a year. I remember when he was born I was terrified he had Down's Syndrome. I'd sit there watching his little face through the incubator wondering just what type of disabilities did he have. Today I only wish he only had DS and not disabilities he has now.

(September 1999 ~Age 3 weeks)

Michelle of BigBlueberryEyes asked me how Aaron was doing with his feeding skills.
For those who don't know Aaron is 100% tube fed. All his nutrition is given through a tube in his tummy. At one point in his life as a small young thing he did drink from a bottle. It was a struggle everyday to feed him. He needed to breathe and he had a difficult time coordinating breathing with swallowing. He recieved his gastrostomy at 8 months old.
Aaron will eat recreationally, by this I mean he's eating purrees and he likes to lick chips. The boy will not chew, refuses to put anything in his mouth of nutritive value that needs to be chewed. There are days I try, there are days I do not. He is the boss of his life and if food brings him fear I don't want to intrude on what he's capable of handling.

(November 1999)

Being Aaron's mother now is much easier than being his mother when he was an infant. That time in our lives was fraught with worry. I was a nervous wreck. My biggest fear until Aaron was 5 years old was if he was going to die. Now I don't worry so much about it. We only have the time we are given. He's healthy and he's not going anywhere anytime soon. I think we have a lot of years left together.
(January 2000)

Teresa asked What would Aaron's ideal day be like? What makes him especially happy? Aaron's best day ever would be spent with his dad playing video games all day. If he's with his mama it'd probably be spent at the grocery store looking at the Kodak Picture Maker all day long. Music makes Aaron very happy. Playing outside in the kiddie pool. Going for walks around town. Getting new video games. Playing piano. He loves the scooterboards at school. Aaron's favorite things are gameboy, his foamy puzzle (as seen in the picture below).

(August 2002)

August 2004 Aaron got his first wheelchair. Within weeks he knew how to wheel himself all over. It was a special day for both of us. I was sad at what we had lost but most happy for what he just gained. Freedom to go where he needed to go. With this chair he was able to go to school a couple weeks later.

(winter 2002)

One day in the summer of 2004 Aaron just stood up. He was determined to play the piano and he stood up. He was smaller and it was less difficult for him to get up. He only did this a few times. Now he can't do this because he's just too tall. He can stand up to get off his bed by himself and he can get up and down from the couch by himself. At school he uses a stander up to 45 minutes a day.

Many people ask me if he will ever walk. Five years ago I think people were stupid for asking me and I wanted to knock them into the ground with thier insensitivity. Now though I tell them simply no. By saying no it doesn't set me up for heartache. Once in a while it hurts to see everyone else walking and little Aaron cannot. I'm most gratefull that he can crawl.

Michelle of BigBlueBerryEyes asked me if Aaron was helping with transfers (to from wheelchair, stroller,wagon, car). At school he is being taught to get in and out of his wheelchair by himself. Apparently he can. He doesn't here. And I find it's quicker if I do it myself. I know I shouldn't and I must let him help himself. Sometimes I take the time to show him how to go from one place to the other. We take it one day at a time. He's getting heavier and I'm gaining more muscle. We'll worry about when and if he's too heavy when that time comes. Right now our little routine is working. I do what makes things easier on both of us. Thankfully some taxi drivers are kind and offer to sit Aaron into the vehicle for me.

(August 2002)

Aaron is not the child I wanted or dreamed of having. He is, however, the child I have. Given my option of having him or no children I'll take him. I am not the mother I thought I would be. I'm much better than I imagined. There are moments where I'm like any typical mother and there are days when things are just too much to bare. Love gets me through each moment. The love for this little boy. My job is to make sure he is happy. My payment is his smile.

(April 2005)