My Other Child

I talk a lot about my "special" child but I really have two special children. As mentioned in previous blogs, GiGi has a little brother and today he is turning six, (I have made several requests of him to stop aging after age seven but he refuses my pleads and will hear no more on the subject). He's been through a lot in his six years but he is a very well adjusted boy who is tender, wise and loves his life . . . and his big sister.

He was only three when GiGi got sick. I used to ask him once in a while what he remembered about GiGi before she had a "bug in her brain". He would tell me about spending time with her under the neighbor's smoke tree. For a while his most vivid memory of her was of the night before she went into the hospital, "remeber GiGi was screaming and crying mom?"

Now, he doesn't remember anything about her from before. His fading memory of her was a hard thing to accept but that's just the way it is. Selfishly, I wanted to be able to share my memories with him. Once in a while we look at old pictures of the two of them. Lately I've noticed that those albums are being pushed to the back of the shelf by new albums filled with new memories and fun times had in the last two years.

I did a lot of research on how having a disabled sibling affected people. I asked family and friends that had disabled siblings, and found some articles and books on the subject. Most of what I found was that it could be hard at times but mainly it made them stronger people. I see that now. Taki has grown so much in the last three years. Don't get me wrong, he is a typical six year old in a lot of ways but there is something that seperates him from most of his peers.

I don't know if I can articulate it but it's there.

He is very protective of his sister and celebrates the loudest when she smiles or laughs. At bedtime we usually spend time in GiGi's room playing on her bed. Sometimes she will jump on him or pat his head. He gets soooo excited. Luckily, he doesn't notice the stares and remarks yet.

My wishes for him are what all parents wish for their children; they are very simple: peace,happiness, health, self-love, safety, and freedom.

One special wish just for him would be to be blind and deaf to some of the "normal" people for as long as possible.

I want to thank all of our family and friends who swooped in during the hard times to keep our house a safe and happy place for Taki. He never went without attention and love. Because of our "village" our family survived intact.

George and I are so blessed to have such a great life with two wonderful kids.

We watch our children grow and learn and live life every day.

This is a picture from his third birthday party. We had it at the hospital outside of the PICU where GiGi was.

George and I thought, how horrible to have his third birthday in the hospital but he didn't mind, he actually really enjoyed himself.

Sick Days

It's winter all right. Snow, wind, rain, gray skies and sick days. The last two months have been filled with them all. I don't think we've ever had more of a sick stretch than we've had lately. Nothing really serious though, just the usual stuff: vomit, diarrhea, and mucus . . . . lots of mucus.


I am someone who usually gets sick once a year and battles on with few casualties. I can continue on, functioning minimally as a parent and as a student. Last week that all changed. I was suffering from a long list of nasty things that took me down for the count. This time it was like the "perfect storm" of aches, pains, fluid loss, and virulent little invaders. I felt like I was being battered in every direction. Once I saw that my ship was going to crash into the big giant tsunami wave in front of me I let go of the wheel. I took this as an opportunity to drop my armor and crumble to the floor. I have to admit it felt pretty good. It was a momentary lack of strength but I needed it, I wanted it.

I stopped.
Stopped studying
Stopped driving somewhere
Stopped cleaning something
Stopped cleaning someone
Stopped smiling
I stopped going forward.

My husband kicked into high gear, (as he was still in the trenches with a cold himself). He took care of everything. He just saw what needed to be done and did it. He kept the ship moving forward for us. He had the kids ready for school and came home early as needed. He kept up with the laundry and even did the dishes every night, (I am thankful for this reminder of what a wonderful husband, friend and partner that I have that I can take for granted sometimes). During this time, however, I noticed that he struggled with seeing me weak. He's ok with sick and injured but he doesn't know what to do with weak. I needed him to let me be down. Feeling so sick made it possible to get a lot out of my system. It wasn't so much weakness as it was a surrender of sorts. I invited all of my emotions to come out and party.
My mantra was to see it, say it, and feel it. You know what I mean?


I am feeling better now. My emotions had their say and back in their previous, safe place. They are less bumpy and raw and more even and manageable. My tissue pile has begun to subside and I have forgone the nightly Thera-Flu. My husband is ready to help me stretch my back so I can keep moving.



I have stepped back to my position at the wheel and my compass is pointing north again. My moments in the shadows were transitory.
I will keep going forward because it's the direction that we must go, even if it's only a few inches. I move along, living life being a productive part of the wheel that keeps spinning, keeping true to the promises that I made almost ten years ago on our wedding day. I smile through every diaper change, even though I didn't plan on changing diapers into my forties. I take deep breaths and watch carefully to keep time while my daughter has a seizure, even though inside I am screaming for someone to make it stop. I assure my son that I will come and tuck him in, even though he'll be asleep by the time I get to him. I go about my day with a smile, even though many days I feel like a failure as a mom because I can't make it all better with a bowl of soup or a Hello Kitty bandage.

When it comes down to it I am truely happy with my life. I quiet the self-talk and look forward to see the treasures facing me.

We will be ok because we have each other. We all have each other.

P.S.
My hope for writing this blog has always been to possibly help someone who may be struggling with some of the things that I am/have struggled with, (and to be somewhat entertaining).


I got this e-mail a a few nights ago in response to a video I posted on Facebook of my daughter during her intensive rehab almost three years ago.
I originally tried to e-mail it to her teacher but it was too big.
I did not think anyone, besides GiGi's teacher would be able to watch it.

Well, I got a message about twenty minutes after posting it from someone I had never met. She wrote . . . . You don't know me but your video of your daughter made my evening! My son is a couple weeks short of 10 years old and has a Traumatic Brain Injury from a car accident 7 years ago. So, the sweet video was so familiar to me. My son is still not "talking"... just wanted to say how much I get stuck into my own world sometimes with my son...not realizing that there are other people out there that are doing similar things! I don't know if you meant to share this video with everyone of your friends and their friends, but it helped me!



Yeah!!!