About this Blog

Here you will find information and writings by Carrie Dalby, both fiction and nonfiction, as well as the ups and downs of life.

Wednesday, April 22, 2009

"Life is like a box of chocolates..."

At this point in my life I'm eating from the “bittersweet” section.

Most of you know that my oldest child is “special needs”. He suffers from a dysfunctional immune system, which causes neurological interruptions (N.I.D.S.). He has outwardly autistic behaviors as well as internal medical conditions (an active viral infection, food allergies, trouble regulating his body temperature, etc). He's been developmentally delayed since toddlerhood. He'll be eleven years old this summer but he's behind his peers in almost all categories and subjects. But he's also the sweetest kid I know, artistically inclined, and a joy to be with. He's doing a great service in my life, teaching me more about the world and myself (things I embrace and things I'd rather not deal with, but we are where we're at for a reason.)

Since he is my oldest I didn't know what to expect and therefore didn't know what I was missing when he failed to reach developmental milestones. Through years of medical intervention and close monitoring of blood work he is showing improvements, both on the numbers showing in his lab work and his developing of new skills and abilities.

Now with my three and a half year old son I'm seeing the miraculous blossoming of a healthy child. He's not asking the magic “Why?” questions every other minute, but wonders how, where, and when things happen. And that's when he's not busy telling me what he's going to be when he grows up. (Within the last week he's declared he's going to be a skyscraper builder, firefighter, race care driver, and concrete mixer.) This little guy is already “writing” letters to his friends and actively seeking information on anything and everything.

I'm experiencing all the stages my oldest missed because his body was sick and he wasn't able to learn/develop along the typical growth chart. I'm watching little brother surpass older brother with language, socialization, and imagination.

I'm seeing just how much my oldest is trapped in his own world. I'm realizing that after all the gains he's made over the past seven and a half years of treatment he's still grossly behind his peers... and even behind his younger brother.

I'm criticizing myself for slacking off my efforts with him during the past few years, feeling I've neglected the oldest by dividing my time to care for the younger two.

I'm over-whelmed with all the hours and effort I'm needing to put in with him to help him be better able to have a higher quality of life.

I'm aching for the world to see the beautiful soul who peeks out from my son amid the chaotic symptoms of a harsh illness.

But thankfully I'm accepting the massive journey ahead of us and recommitting myself to the up-hill climb.

1 comment:

  1. Dearest Carrie - Please do not feel that you have neglected your son in any way. From all that I know, you , like our Sarah, have been devoted to helping him grow. Having Sarah and her little Oliver live with us allows me to cuddle and love our little grandson who has Down Syndrome. Yes, he is much delayed from others his age, and yes, his deafness in one ear is going to further hinder and delay his speaking, but he is such a joy and such a happy, loving little guy. Sarah too often, like you, doubts that she is "doing enough" for him, but EVERYONE who has met and observed them (doctors, therapists, teachers, etc) have all said to me what a wonderful mother she is to Oliver. I wish she would believe that with all her heart and mind, and you must believe that about yourself too. You too have a sweet and loving son, so enjoy him and know that you too are a special mother to have been given him. Love you - Aunt Lynne