Getting out of Dodge

It's been a good summer. Started off a bit damp but the golden orb in the sky has graced us with enough light that my lawn is a green and blond mix of crunchy carpet.
We have spent most nights barefoot in the back yard just being a family. I decided not to fill our summer with car trips back and forth to camps and play dates. Taki did go to one week of golf camp and four days of rock climbing camp. We also spent time at the zoo, library, and various parks. Other than that we enjoyed unscheduled bliss. I savored my days off of work by playing wiffle ball, swinging, going to the bowling alley arcade and watching and appreciating my children. I haven't been able to do that much in the past. Finally, I've been able to work some of the funk out. I became more of an observer, a researcher and an advocate. Focusing more on what I have control of. I've hung up the pitty party hat and strapped on the running shoes. I've got my mind on my health both physical and mental. I saw this great quote on the Acitve.com site on Facebook that I would like to share: "I run so the goals in my life will continue to get bigger instead of my belly". I also run for a challenge and to create some more positive energy and coping skills. I will stay in the here and now, see good things in life, and take care of myself .
Some of the shifting started when we got a letter in the mail about DHS cutting off any and all services to individual and families having or caring for children with developmental disabilities. That would mean no respite care, in home care, equipment, support, anything. It was shocking to me only because I know one person especially that it would hit and that person luckily was not GiGi. I was thinking of a close family friend. I couldn't stop thinking about her and what this might mean for her and her family. It also made me realize how lucky our family was to be able to provide our daughter the special things she needs. How could this whole population of people just be downgraded as human beings? In my mind I started to think about what this might look like for other families who rely on the little that had been provided.
It activated me in so many ways. There are many who are having a difficult time these days but let’s not decide that one group of people deserves more than others. FYI, funds were found and there will be services provided until Feb 2011. What then??? Who knows? I will be informed and be ready to advocate. I just don't get it. It just gets me going about so many things. Check this out . . . .
I was at a place that shall remain nameless. It is a small business establishment in a busy part of N.E. with a small parking lot and only one handicapped parking spot. I was with the kids and noticed that the handicapped spot had a car in it. I had seen the occupant of the car get out a few seconds after I pulled in and she was looking around like she was worried about something. I looked around and there were no other spots in this lot and as I said before it was in a very busy part of town. So I did something I very seldom do . . . I pulled up behind the car and got out to investigate whether or not the car had a handicap plate or plaque. It didn’t. I just so happened that an employee of this place was outside at the time and I told him that I needed that spot and could he ask the person who owned the car to please move it . They went in to get the car’s owner and another employee came over to my car and said to me, “I don’t think she’ll mind moving her car”. Really. Golly Gee, I hope I didn’t ruin her day by having a handicapped child. Soooo sorry lady who is late picking your kid up so you have to take the only spot available in the lot that just happens to be for people for whom you are ok with disregarding when it suits your needs. I was going to just keep any comment, appropriate or otherwise, in my head and nod politely but I didn’t. I said, “The handicap spot was not created as a convenience spot, I need to use that spot for my child’s safety, she is disabled.” I also noticed that the small space next to the handicapped spot for vans with lifts and people needing more room was also taken by a big honking station wagon. Come on now people. It’s time to get out of Dodge.
In a few weeks we will be embarking on our annual trip to Cape Cod. I am looking forward to spending time at the beach and watching my kids play in the water, fill their bathing suits and ears with sand while discovering interesting shel ls and sea life. We’ll shower outside, pray outside, eat outside, and play outside. We’ll curse the mosquitoes and our sunburned shoulders while toasting marshmallows and listening to crickets. We’ll watch the Sox game and sit by while grandpa turns the television on and off, (to avoid disappointment overload). Grandma will get us all moving ; making something, learning something, trying something. We’ll visit with YaYa and Papou where the kids can get their fill of kisses and hugs, tickles and treats to eat. I will get many moments of comfort from familiar surroundings and people who know my underside well. I will visit with my oldest and dearest friends. Some of whom will be meeting my children in person for the first time but who I have felt beside us through the most difficult times. They will look at my GiGi and say how pretty she is and how much she looks like me. I will try to say thank you but it will probably come out all slobbery or turn into a silly comment. I know they will get it. They always do.
We’ll break up the heavy stuff with talk of ancient history. Intruding little faces will demand our undivided attention to watch a stunt or settle an argument. We’ll comment on how crazy it is that we are the parents of these little people and we’re doing ok.

FALLING

As I have mentioned before in earlier blogs, it can be difficult for me to find things for GiGi and I to do together. She doesn't tend to interact very much with things beyond her own reach. I often say that she is in "her world” and she doesn't let me into her world very often. This is something that I have grown to accept. I watch her have seemingly meaningful, intense, and quirky interactions with a calculator or a spatula and I'm ok with that. I get to watch her and she is happy in her world. Much of her time is focused on doing the circuit she has created around the house. The best way to describe this would be to explain it from the end: She finishes a go-round by standing by the back door, wanting to go out to use her swing or spend some quality time kicking the river stones that lines the side of the house. She waits a minute or two and then continues by revisiting her touchstones: the dining room table, the kitchen sink, the family room built-in counter etc. Then she runs really fast towards the wall in the family room and at the last minute, when you think she is going to collide into the wall, she pulls up and makes this sound as if she is laughing. Not really a giggly kind of laugh but like a maniacal kind of laugh as if to say angrily to the wall, "Ha!, you thought I was going to hit you but I didn't". Then back to the door. Sometimes she climbs onto the back of the couch to just longingly stare at the swing. I don't think she has the ability to do this for the drama effect; she is really looking outside wishing she was there.

About two months ago, while George and Taki were at basketball, GiGi and I were hanging out at the house. She was dressed and doing her usual obstacle course in the house. After about thirty minutes or so of this I got dressed and decided I was going to take her for a walk. After all, the leaves have all fallen and they are bright and beautiful and crunchy. It is my favorite time of the year and I would like to share this with my first born. After making this decision I had to figure out a way to get her past the back door and into the living room to the front door. Once she can touch the front door she is fine, it's getting her there without her flopping that's the problem. And when I say flopping, I don't mean a 2 year old "I don't want to go" flopping. I mean a sixty pound, 8 year old, "I know how to throw my weight around and pull a muscle in your back" kind of flopping. We made it to the door, after the usual battle maneuvers.
We got outside and it was a glorious. A picture perfect brisk fall day. The sun was shining and the air was crisp. I had to strongly guide her to the edge of the driveway and then things got easier. She allowed me to hold her hand and show her around the neighborhood, (this was our first walk around since we moved here). I made sure she hit every leave pile so she could drag her feet through them. We held hands and I told her stories of when I was a little girl in New England and why I loved the fall so much. All in all we spent about thirty minutes walking and talking. I noticed she was staying with me with little coaxing. I began to swing her hand in mine and sing songs she used to love. It was such a special walk among the leaves.
Later on that night I could not stop thinking of our time earlier in the day. How our worlds came together or maybe it was more like me letting her into my world. I get stuck so much on her not letting me into her world that I don't give her the opportunity to come into mine. Are they really two different worlds? Do I separate them because of the pain that I hold on to? Maybe she invites me to her world and I don't listen to her tugs, her laughter, and her cries. What about her pain? So many new questions that may or may not have answers. But these questions also bring new ideas and appreciation for what is really most important: spending time with my precious girl no matter if she grants passage to her world or not, I'm here for her no matter where she is. I'm her mom.

The Move

My family has moved recently. We are now living in a one story home that is much safer for my little girl. Not a stair to fall down, (or carry laundry up). It wasn't much of a move, just a few exits away. We've been in our new house for a little over a week and we are still living out of boxes. It baffles me, seeing how much stuff I was able to hide in the old house. The new house doesn't have a basement or attic. Because of that I have given my hidden treasures, (junk) to the Good Will. I am aiming to find a place for everything by Thanksgiving, possibly New Years, my 40th b-day for sure.

Even though things are a bit out of sorts we could not put off this day. Today is the first day of school for the kids. Like many parents I know, I have been looking forward to this day. My mission this week was to open boxes to recover their backpacks from last year which, I might add, are in shape to last several more years. How much damage can a first and second grader do to a backpack anyway? I've never understood this mad dash to do the kids back to school shopping. What's wrong with the stuff they have. I just buy things as things are needed. Back to the backpack. . . . I found them! I emptied the remains from last years classes and put them back in commission. I filled them with all of the items that were on the "list" found on the school's website. I thought it odd that this list had name brand things, as if the companies were in cahoots with the schools. Things like Crayola crayons, Zip Loc bags, etc. It reminded me of what a rip-off the college campus book store was.

So as last evening was coming to a close I set off to complete the "before school ritual" that I had been on vacation from all summer. I easily uncovered the buried, old musty, lunch bags. After a few washes with lemony dish soap they were in surprisingly good shape. No need for a late night run to Target for new lunch bags. Phew! I got out the old ice packs that have been in hibernation and got to figuring out what to make. Soy nut butter and jelly for Taki and hot dog for GiGi. That wasn't so hard.

The alarm was like a siren this morning at 6:45. I held off the day for 15 min and arose at 7am. GiGi was already up. She fed herself a bowl of flakes. I am amazed at how focused and agile she is with a bowl of cereal and a spoon. If they had an special Olympic event for cereal eating, hopping on your knees,or chewing on things GiGi would be a contender. Once she was done with her morning meal she was up from the table and heading back to bed. This was the usual order of events during the off-season and it wasn't going to be changed in one day. So,I let her lay down while her brother got ready.

Taki was reluctant to get out of bed but after reminding him of what day it was he said to me, "mom, can you open my dresser drawers, the ones with the pants and shirts but not the bottom one because that one has jammies in it?", as if I don't know what is in which drawer. He rolled out of bed and made his all important clothing decision. I was not involved in this except to remind him to wear something nice on his first day. He picked out something totally appropriate and headed to the kitchen to prepare his own breakfast. He was full of pleases and thank yous which made me so proud.

I rewoke GiGi and got her dressed in full gear. She hadn't worn her helmet or her VNS magnet all summer (http://www.vnstherapy.com/). As excited I was about this long awaited day, I started to feel a bit anxious. I continued on and got the lunches out of the fridge and into backpacks and headed out the door. We registered the kids a little late in the summer so GiGi will not be getting the bus until next week. However, Taki had an assigned bus stop. He and George walked, jogged, sprinted, to the bus stop and made it just in time. Later in the morning George told me that they had just made it and Taki just ran right up on the bus and didn't look back. I was not surprised. I got GiGi in the car and we headed to her new school. We made a silent drive to the new place and made it into the classroom without much ado. Going into the door we got the usual stares from kids and parents. This, we have become accustom to. We found her classroom and I unpacked her things and handed over her medicine and her magnet to the classroom nurse. I stayed for a while and watched as the other kids filed in, some in wheel chairs and some on foot. Being around this environment was not new to me and I was not unsettled by the kids it was more the room. It is a small classroom with so many people buzzing around; the teacher, the aids, the nurses, etc. My stomach began to flip-flop. I didn't know exactly what it was. After about 15 minutes I left and GiGi was on her own to challenge her new educators. As I started down the hallway busy with kids organizing their lockers and showing off their new kicks, I did not see anyone that I was familiar with. I began to cry. I know she'll be OK, this is not her first time at school. When I got in the car I really had some difficulty controlling my emotions and I just let it all out. The tears brought clarity and I was able to see what it was that had punched me in the gut. GiGi has been in school for 4 years now and has been in 4 different schools. Her first experience with school was at our local elementary school for early intervention, (she was 5 and out of the hospital for 2 months). After early intervention they placed her in a new school for kindergarten. Unfortunately, that classroom was closed down after her first year and she was sent to a new school for 1st grade. She was in a wonderful classroom with an amazing teacher and aides. Now, since we have moved, she is in yet another school. What was different now was the community of friends that I had in the old neighborhood. They were the parents of the kids at my son's old school. They were all so supportive and caring. It was very comforting to me. Now we are in a new place and some time for adjustment is needed. We will make new connections and of course have the old ones as well. We'll be ok. I'm headed off to have breakfast,at a restaurant, without the kids.

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!!!

PICU HAIKU

I tried to post this under good reads, (at the bottom of the page) but I was not able to.

dark room, weeping room
silenced child tangled in tubes
warriors all round

Girls Day

At least one Saturday a month my husband takes Taki out for "Boys Day". They go the the coffee shop and then to get their hair cut at the neighborhood barber shop "7 bucks a whack". (Yes, that's what it is really called.) There are only two chairs in this tiny barber shop. If you ask my son he will tell you that one is John's and one is the lady's. He doesn't know the lady's name but he knows that he doesn't want her to cut his hair. John always cuts it. The lady cuts dad's and John cuts his. The next stop is often the golf store to try out some new clubs or pick up some practice balls, to be saved for when dad is barbecuing in the back yard. Sometimes they go to lunch or go through the car wash. Taki doesn't really care because it is Boy's Day.



So obviously when it is Boy's Day it is also Girls Day. This is my opportunity to spend some time with just GiGi and try and do something special. "Something special" has a whole new meaning than it did in the past. Before her illness we could go to movies, do each others fingernails, have a special dinner; the objective really was to be without little brother. Now, it' s hard for me to find something for us to do together. There are few things that I see her enjoying: swinging in the backyard, chewing on things, eating, and playing in her room. I struggle with how to translate what Girls Day means now. What does she need to get away from now? What would be a special day for her? I spent a lot of time trying to figure out this conundrum. I went around and around with what to do. I tend to overcomplicate things so instead of constantly seeking, I let it be.

Last weekend her and I ventured to the grocery store. It happened to be Boys Day and I thought we'd try something new. I've taken her before but this was different. I made this about her and not about a list of things I needed to fill my refrigerator. I made it about her and not about my son wanting to stay in the toy section for an hour. She would have free reign of the store and I would follow and cheer her on. Just being their for her, letting her be herself, in her own time and space was awesome. She got to run around. I wasn't tugging at her to keep moving so we could keep on schedule and make the next stop before it was time to move on to the next destination. What I discovered was that she really enjoyed pushing the cart. A few times she walked up and tried to take someone else's cart. Most of the people would say something like: "Oh no that's not your cart." Then I usually apologized and we walked away, but there was this one guy who looked at her and said "Does something in their look good to you?" He was having a conversation with her. He engaged with her. He wasn't quick to get away from her. It was a celebratory moment. I wrote in an earlier blog about the new things to celebrate and this was one of things. Inside I celebrated for her. She was having a blast and I was there to share it with her. I celebrated for us.

Girls Day is back!!!