A Trans-parent View of Down Syndrome

Ever had one of those days when it's over 90 outside, you get up, get ready for work,  feed everyone, head them all for the car to be conveyed to their respective places, only to discover that your 16 year old son is wearing shorts, a tank top,  and camouflage colored snow boots with wooly socks? 

Ever had one of those days when you get ready to leave church and your 16 year old son took all the markers from the 2nd grade class room and stuffed them in his underwear and you have to drive back to church to return them because you did not notice until you wondered at his constricted walk up the stairs?

Ever had one of those days when a lady at church approaches you with a paper plate full of donuts covered with salsa, grapes, and cream cheese, informs you that your 16 year old took it and did not eat it and it is a waste of food, and what should she do with it? (And the devil inside you wants to answer, "I'm good, but you may eat it!")

  Down Syndrome - what is it?

 The dictionary says,

 noun Pathology .

a genetic disorder, associated with the presence of an extra chromosome 21, characterized by mild to severe mental impairment, weak muscle tone, shorter stature, and a flattened facial profile.

My 16 year old  son has this ...eh ....pathology (what an odious word that is), and it is about him and living with him that I have chosen to write this blog.  His name is Benjamin, he is a sophomore at our local high school. He is about 5 ft 1 inch, 102 pounds, and he loves to bowl, horseback ride, follow the birthdays of everyone in our family, and write letter.

He is the topic of this blog.

I named the blog 'trans-parent' --- because as the villain in Dicken's novel "Little Dorrit" says, "It is my character to be  _____" and then he lists a bunch of traits. It is MY character to be transparent. People tell me so, and it is both to my detriment and to my merit --- depending on the day and the topic. :P

Also,  hopefully my blog will connect with other parents, so the blog with go trans (across) to other parents. But I also hope to show the reality, the ups and downs (if you will pardon the trite pun) of daily life with Down's, for him, for his parent/parents, and for those who connect with our family.

The dictionary mentions the physical characteristics and medical manifestations of Down's only. That definition is what most people know about Down's, but that tells you little about what it is like to live with a person who has Down's. The joys and also at times the -not-so-much joys that accompany that person's sojourn with his family.

Before I delve in with a weekly post of curiosity, hilarity, or other tid-bits of life in the 'somewhat-slower' lane, let me dispel some myths here.

First of all, I am not planning a rosy rah-rah-you-can-do-it blog. I am not that personality, to start with (FAR FROM IT!!), and also there are other pep-rally spots out there telling  how persons with Down Syndrome are human beings with likes and dislikes just like you and me (duh!!).

I am also not writing specifically for families with babies who are just getting started. Seriously, if you have a baby with Down's, you  may not want to delve into teen and adult issues yet. Each day, each year has its own set of challenges.. I know I wasn't ready for teen issues when my son was just a baby.  I needed all the encouragement I could get just dealing with the medical, and frankly, he was plenty sick, that I had days when I did not think we would ever GET to the teen stage.

I am also not writing from the persons-with-Downs-are saints perspective. I remember one time when our family was in line for confession at church. My daughter reported to me that as Benjamin went up to confession, a lady said to her, "Oh, but I am sure he can have nothing to confess."  Well, as his sister, Kirsten could assure this lady that Benjamin had PLENTY to confess.

What I am doing is writing from the perspective of the parent of a near-adult son with Down's with all that it entails from the joys and the fun and the moving moments, to the medical, to the social, to the financial. to the emotional to ... to... to the unmentionable that nobody talks about, but which are issues or concerns that are real struggles for parents to deal with, that may curl the toes and hairs of siblings  (especially when things occur in public).

There is a whole person in that package with trisomy 21, and there is a whole person with hopes and fears and dreads and impatience and love and fatigue and elation in the momma to a person with Down's, and it is both those persons I hope to shed a little light on in this blog.

"Don't give up the ship", the dying command of James Lawrence in 1813 aboard the USS Chesapeake..... :) Life is a gift, and infinitely worth living. Even when  I sometimes mutter to myself, "I so totally did not sign up for this!!"