Friday, December 16, 2011

What's It to Ya?

Many people find this blog by searching for a mentally retarded baby. If you google that term in images, Kimani comes up near the top of the list. The post you land on is “It Wasn’t Meant that Way.”

prettyface

I am such a curious woman. I wonder about all the reasons a person might be searching for an image of someone like Kimani. Maybe you are a pregnant mom who just got some scary news. Maybe you are a college student doing a research paper. Maybe you are someone searching for nefarious reasons.

Whatever brought you here, I hope you gain something positive about mentally challenged people.

My daughter Kimani has Down syndrome. She is three years old now. As an infant in the NICU she contracted meningitis and suffered brain damage resulting in cortical sensory impairment. What that means is that while her senses (sight, hearing, feeling, etc.) all work correctly, the cortex in her brain does not always properly process the information it receives. At times she is legally blind, or deaf, or unable to feel things. It also means she processes information quite slowly when she is stressed or tired.

singing

As you can imagine being sometimes blind and deaf and running on less neurons can make learning difficult. It can also make day-to-day living kinda frustrating for her and for us.

There is a huge difference between a person with Down syndrome and a person who has suffered brain damage. Apart from my Kimani’s unique and gorgeous face, which gives a hint of that extra 21st chromosome, she does not represent a typical child with Down syndrome. I have two adopted daughters who both also have Down syndrome and they are similar to each other in development and very much like my two typical children who have just 46 chromosomes.

prek_certAlthough Kimani has difficultly with learning and retaining new things, she can walk and climb. She can say a few words and can sign a few more. She is cooperative with getting dressed and other similar activities. She transitions well from one thing to another, sleeps like an angel, and is doing well with potty training. She loves the pool, her iPad, and dancing around in my arms to 70’s disco music.

kickit

If you take some time to read around this blog you will encounter the power Kimani has wielded in my life, and how that power has infused me with renewed creativity, brought me emotionally to my knees, taught me new ways to value individuals, and whispered love secrets into my heart. You will also find lots of other beautiful pictures of Kimani.

I invite you to share with me what it was you were looking for and if you found it. I accept anonymous comments if you wish to remain private.

smooching

3 comments:

Anna said...

I am wondering how I would feel if our blog was at the top of the list like yours? I accept the label, like your children that you adopted with Down Syndrome we chose this too. One year later it still looks different than what I expected. Hard but oh so beautiful......

Chromosomally Enhanced said...

I have to say this brought me to tears...but for my selfish reasons of missing you and your writing...simply put beautiful...I love to hear about Kimani...she is so beautiful and full of light...I cannot imagine the communication gap that is there...I often wonder how people find my blog...if it is for help to not feel alone...is it because they searched me through facebook and are snooping into my life now...whatever the reason I am sure they come away with a "wrong" view of my feelings for my Maddie...often I vent and I am just plain scared and confused...that sometimes comes off as me not loving my daughter...I love her but I am very real about my feelings and so are you..I love that...love it! smiles

Jenny said...

I love your thoughts about how having Kimani in your life has emotionally brought you to your knees and whispered love secrets into your heart...that is so true. My 19 mo. old son has DS, and I honestly can't remember what life was before him - and don't every want to live my life without him. I'm so so so in love with my son.

Post a Comment

Go ahead, say it.