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!!!

Full-Circle

Last weekend was one of those "full circle" weekends. I started doing a clinical rotation on the very same hospital unit that my daughter was on almost 3 years ago. My memories of that time are very vivid and the pain, though dulled, will still tiptoe up and sting me once in a while. It's true that time does smudge the harsh strokes of despair, being that all things are relative.

Our days no longer start with a nurse waking us up or a pulse oximiter alarm sounding because GiGi is having an apneic seizure, (a seizure when you stop breathing).
Being there made it hard to distinguish day from night. And so we began to speak in a language that measured time by what shift it was or by what nurse was on. Eventually, when we came up with our own schedule for being there, we would adopt the nurses ritual of giving report to each other during our daily shift change.

My husband and I weren't left with the same feelings about the hospital. Although GiGi received the best care the hospital haunts him. I, on the other hand, am drawn to it. I enjoy being there as a volunteer, and as a student. I became who I am now as a direct result of the time we spent there. I have a lot to give back.

The night before I started on the pediatric unit I had awful anxiety. It was not apparent at first what was causing this anxiety. Then, it hit me . . . I will be working with some of the same nurses that had seen me at my MOST vulnerable. I would be learning from some of the nurses who helped to pick me up off the floor after sobbing for hours. I would be meeting with my classmates in the room where my husband and I had softly, and in very few words, spoke of the possibility of our treasured child not coming home. Lastly, I may meet a parent who is where I once was. Will I cry with them or will I have the ability to help them on their journey that I once traversed?

My first day went better than I thought. I worked with a nurse that I knew well and who had been someone who helped my family with it's journey, almost 3 years ago. We caught up a bit and chatted and then it was down to business. I was relieved. The anxiety was pushed away as I immersed myself in the nursing. Now, I am no longer the mother of the little girl in room 3540. I am the nurse, (student nurse) who will care for your child and help you up from the floor when it's slippery with tears.

Just One of the Kids

The playground is a curious place. I think once you hit a certain age you lose the gene you had as a child that helped negotiate its bars and invisible lines. My son's school has a large, blacktop playground. There are two play structures sitting in bark mulch pits guarding the entrance to the annex. The playground also has a small half basketball court, a kickball diamond and a large open area with remnants of painted maps and grids. To the kids it represents freedom from their 6 hour confinement in the classroom. For me, it's hard to see past its vast flatness; the hard, cracked, leg bruising, knee skinning concrete that it really is.

There are gangs of mothers hanging out on various corners of the concrete catching up on what the principle is doing and who has lost a tooth. Every 10 minutes or so they look across the sea of children to find their own and then back to the playground chatter. There are always a few dad's, grandparents and other caregivers that have fearlessly detangled themselves from the parking anarchy and triumphantly staked their claim on a square of the sacred ground.

My daughter and I often pick up my 5 year old son from school. On nice days, temperaments permitting, we engage in all that this extra hour or so on the school yard has to offer. I never see my son soo excited than I do when he is cruising the flat top scoping out the nearest contact sport. It doesn't matter if it is with his own amigos or with kids that are twice his age, he just wants some action, someone to push and pull on. Most times there is a kickball game going with kids in his class with and a male teacher who keeps the game going by diverting crisis',(like when there are 3 kids on first base and no one wants to move). He makes sure they all have a turn being up, in the field and pitching.

I don't join any of the bands of moms/caretakers. I am chasing my daughter around. She really lights up when she around a large group of children in a wide open space. She just wants to run around and take it all in. I pass by people I know and wave hello. They all know by now that I wont stand in their posse because I will be pulled away mid-conversation to find where she's gone or what game she has walked on to. There are times when a mom will join me as I walk and keep my eye on GiGi. They've seen our dance and join in, asking how she is doing health wise.

There is one little girl who is intrigued with her. She chases her and tries to get a look at her face. She is curious who this girl is running around alone while all of the other girls are chasing boys or sharing their lists of friends with each other. My daughter doesn't stop for this little investigator, she keeps on running. One day I told the girl that her name was GiGi. It appeared to satiate her curiosity. More commonly I see children staring at her or asking me what is wrong with her. I tell them that she likes to run around and listen to all of the kids playing and that she is Taki's BIG sister.

My favorite times on the playground are when I stand back and watch her blend into the crowd. She disappears and is one of them, just a kid in a playground trying to be free. Free from her long day at school, free from me; free from being controlled. She makes me see the playground as something new. I begin to see it as another world, far away from anything else in her reality.
After all she is a kid. A playground loving, freedom hungry kid.

the life I never had

Today is the unofficial end of winter vacation. This year it started a week early due to inclimate weather and someone in the family being sick. Come Monday morning we are going to be some slow moving, grumpy people.
My daughter had a cluster of seizures today that really wiped her out. She lay down most of the morning, only waking up for 3-4 minutes at a time to have a seizure and then fall back asleep. After having 4 seizures, (that I saw) and sleeping for about 2 hours she arouse from her slumber.
These days she is out of her wheelchair, off of the ketogenic diet, no more stomach tube, and down to 1 anti-seizure med, (from 4). Her favorite things to do are swinging in the backyard, playing in her room , and chewing on anything and everything. I do a lot less nursing these days and try to find ways to connect with her and be her mom.
I remember once when she was in the hospital having some kind of procedure done. I was in the waiting area. There was a nurse talking to me about what to watch for after the procedure was done. She saw that I was upset and stopped being a nurse and became a fellow mom. She told me that she had a son with Cerbral Paulsey who was also mentally retarded. She explained to me, while choking back the tears, that she learned how to celebrate different things in his life. She stopped looking forward to his college graduation, his wedding, and the birth of his child; she had let all of that go. She now looked forward to cellebrating his daily successes.
She made me think of all that I needed to let go of. The ideas I had formed in my head before my daughter was even born. The times we would spend together on mother-daughter outings, the nights I would hold her and promise that her heart would be ok after a break up. Then of course the big ones like graduation, wedding day and the birth of her children. I had already filled my head with the ideas of what my life with my daughter and my son would be.
I still haven't completly let go of this life. I have to though, to be fair to my husband, daughter and my boy. It's not fair to mourne a life that I never really had. This is the way that it was supposed to be. Denying that would be a diservice to my children. And like my husband says, "She is the one who has suffered".
I never asked or thought that what happened wasn't fair nor did I ever say , "why her"? I feel like asking these questions is like saying that it would be ok for someone else to go through this; like saying it's ok for this to happen to a child that is impovrished or from a different race or having parents that aren't like us. This is life, perfectly imperfect.

The sweet sound of teeth grinding

Mornings are always tough. She sleeps in her own room with gates up at her door so that she doesn't get out of her room and go down the stairs at night. If I don't hear any noises my mind always goes to the worst place. This morning I went through my ritual: I wonder if during the night she has had a seizure and has aspirated and is dead. I get up, check on her and see that she is alright; she is still sleeping peacefully. I crawl back into bed and wait for her to get up.
A while later I finally hear her playing with one of her toys. It's the kind of toy that if you push on it it makes a frog-like noise. She really enjoys that one. I listen for a while with a good feeling inside. She is happy in her room. I can hear her hitting her floor, jumping around on her knees and playing with her toys. I know when she's ready to come out of her room when I hear her grinding her teeth.
She never was a teeth grinder before but since her illness she does it a lot. When she first came home from the hospital we would know she was sleeping when she wasn't grinding her teeth. It's gotten better. She grinds them much less and usually because something is bothering her. We were at the store yesterday looking for shoes for her and she was walking around with me grinding her teeth, (she had a seizure and was upset about it). A woman looking in the aisle we were passing stopped what she was doing and just stared at my daughter. She had heard the grinding and wanted to see where the noise was coming from. She didn't say anything she just looked at my daughter and made a face like she just eaten a really bad hard boiled egg. Then she went back to doing her shopping.
For me the grinding is like the gentle rocking of a rocking chair or like the cricket's song on a warm summer evening. Really it's my daughter communicating. I love that she can communicate. She may not have words but she sure does have a way to let me know that something is going on.

Who she needs me to be

It's January 1, 2009. I promised myself I would start blogging this year so here it goes. I will comment daily on the hardships, the joys, and the obstacles of loving a child with special needs. This is my story.
I am a mother of two, a full-time student, and a happily married 38 year old woman.
My children are wonderful. I have a 5 year old boy and a 7 year old girl.
Everything was just perfect until 3 years ago when my cuddly, loving, funny, joyful, smart little girl became suddenly sick. My world hasn't been the same since.
She was normal one day and the next she was lost in a world of beeping machines, tubes, and sterile walls. She was having seizures and they weren't stopping. She would be in a coma in the intensive care unit, (icu) for almost six weeks. The doctors were puzzled. At first they reported that this "virus" would run its course and she would be back to normal but, in reality the damage to her brain would cause her to have some "developmental delays". 5 months later, after being discharged from the icu and been in intensive, in-patient rehabilitation she came home.
Her condition when she came home was fragile. She was in a wheel chair, she did not speak, she avoided any eye contact, she had multiple seizures in a day and was in diapers. She was also on the ketogenic diet, (http://en.wikipedia.org/wiki/Ketogenic_diet) and was given hydration and medications through a tube in her stomach.
I held on to the belief that this would pass and she would somehow become normal again. In blaring selfishness I thought to myself, "Can I do this, can I take care of this child and take care of other things in my life. For the first year I was either bringing her to an appointment, feeding her,preparing her meals, changing her, medicating her or doing therapy with her. It didn't feel like this was mothering. This was more like nursing.
The big questions were . . . . Can I love her? Am I capable of loving this child who doesn't know me? Can I love a child who can't show me affection? And the biggest question of all was can I love a child who doesn't need me? What an awful person I am.
Not long ago I went into my computer files and found some e-mails I had sent family and friends during our daughter's hospitalization. I sounded positive and uplifted by everyones support and kind words. At the time I was uplifted and I did feel positive. Now I find it difficult to be uplifted during the silent moments I spend with her. I am often at a loss for words when I am with her. I just end up saying "I love you" and "Mommy loves you". I hold her head still for a second justto get a look into her eyes.
Most days I feel like a horrible mother. I want to run away and never look back. I never show it on the outside and I would never actually do it.
I am trying to be who she needs me to be.