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!!!
Tuesday, January 27, 2009
Friday, January 16, 2009
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.
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.
Saturday, January 10, 2009
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.
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.
Friday, January 2, 2009
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.
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.
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.
Thursday, January 1, 2009
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.
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.
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