It was just past 10 pm and all of us were watching the news. Jerry, Lindsay, Babygrr and I. All comfy and cozy, ready to relax and unwind but when I think about it....unwind during the news?
Anyway, while settling in, Lindsay was in a very talkative mood. Every person that came on T.V., she would say, "I don't know her" and then that was followed by "I don't know her", then by another, "I don't know her"! Then it was "I want to go to the store, get beez, get pop, get boo"! FYI, Beez is gum. Her mind was working and thinking about the next day, planning it out in her mind. She started asking Jerry, "you go homework?". (Translation: Are you going to work tomorrow?) followed by, "I go homework?" (Do I have to go to work?) and looking at me and asking, "you home 2?". (Translation: Will you be home when I get home at 2?). The sports came on and then it was "get the ball!" (in a very loud voice)and "I want to call Bobby" (Taylor because she knows he loves sports) and during the commercials, she said, "I want to get my papa one of those". I am sure your papa would love a truck, Lindsay! That is very thoughtful!
It was non-stop verbal output! Jerry looked over to me and said, "you know, it is kind of hard to tell your daughter who doesn't talk much,to be quiet"! So true, but we did! Just so you know, it didn't work!
Lindsay's language has changed constantly over the years. She has words that she uses regularly and then those that she has used, never to be heard again! It has always puzzled us why she could say some words so clearly while another word that sounds similiar she wouldn't or couldn't say. Or how she can say a complete sentence, like "I want to get my papa one of those" but others phrases she won't. Why she counts 1,2,4,8,13 but won't say 3 but will say 13 plain as day!. Maybe she is secretly showing us a mathematical sequence no one knows!
When she was very little, she said mama, dada and jibberish, as we called it. She jibbered and jabbered, with much to say, all in her own way. Her big blue eyes, full of expression and animation, we knew what she wanted! Language as we know it was not there but when Taylor was born, she called him "Tay" but soon she stopped and he was then called "Bobby". Crazy, uh? We were perplexed. Around this time, Jerry wrote a poem to Lindsay in 1989:
YET WITHOUT A WORD
You love me unconditionaly, no matter what my mood.
You hug me when I least expect it and help me without my asking.
After a long, extended weekend and I'm depressed about returning to work, you meet me in the bathroom and happily watch me prepare.
Although, Yet Without A Word, you always show that you care. You're a special child, not like many others. I worry about you, but I realize that your differences are why are you are so special.
When I scold you, you pout and widely open your blue eyes expressing your desire for forgiveness. You pat your little brothers head and squeeze him so tightly almost pulling him from his seat. You show little jealousy as though you know that there is plenty of love to go around.
I love you my little girl and I'll not forget these times. Although they may not last forever, they will always be apart of me- these times we share together.
Dad - 1989
Seems like yesterday that she was Yet Without A Word but the other night, while trying to have some quiet time, She was With Alot of Words!
Monday, August 23, 2010
Tuesday, August 17, 2010
Angels amoung us!
I had intended to write more about Lindsay's language and how it has changed over the years but that will wait till next week!
After last weekend when Jerry and I were able to go to Denver and have time for just us, I felt the need to say how blessed we are with those angels amoung us! They are the people in our lives who help us have those moments for just ourselves.
When you have children, you need babysitters! As your kids grow, especially kids with special needs, finding babysitters become more of an issue. Lindsay is almost 25 and it isn't as easy as calling the neighborhood babysitter to come down and watch her anymore. When we aren't with Lindsay, we need someome who is willing to watch her 24 hours, who is willing to help her in the bathroom, to assist with seizures if they happen, understand her language,etc. It is a big responsibility and one that Jerry and I pass along, which is hard to do sometimes. It is so comforting to know she is cared for with love and concern and that we are able to let go of our control if you will and "be".
I think of my dear friend, Eileen and her special needs daughter who needs more care than our Lindsay. I recently shared lunch with her and heard about their trip to Costa Rica,just her and her husband and the effort it took for her to get away. I listened to her telling me about her trip, thinking to myself, I know how precious a time it was for her, how we all need that time to refresh our relationships.
So whether it be family, friends, caregivers who help us when we need that little respite, Jerry and I say thank you. You are our angels as we release our care over to you for our precious kids.
After last weekend when Jerry and I were able to go to Denver and have time for just us, I felt the need to say how blessed we are with those angels amoung us! They are the people in our lives who help us have those moments for just ourselves.
When you have children, you need babysitters! As your kids grow, especially kids with special needs, finding babysitters become more of an issue. Lindsay is almost 25 and it isn't as easy as calling the neighborhood babysitter to come down and watch her anymore. When we aren't with Lindsay, we need someome who is willing to watch her 24 hours, who is willing to help her in the bathroom, to assist with seizures if they happen, understand her language,etc. It is a big responsibility and one that Jerry and I pass along, which is hard to do sometimes. It is so comforting to know she is cared for with love and concern and that we are able to let go of our control if you will and "be".
I think of my dear friend, Eileen and her special needs daughter who needs more care than our Lindsay. I recently shared lunch with her and heard about their trip to Costa Rica,just her and her husband and the effort it took for her to get away. I listened to her telling me about her trip, thinking to myself, I know how precious a time it was for her, how we all need that time to refresh our relationships.
So whether it be family, friends, caregivers who help us when we need that little respite, Jerry and I say thank you. You are our angels as we release our care over to you for our precious kids.
Monday, August 9, 2010
Lindsay Language is contagious!
Despite Lindsay's Chromosome deficiency,which has impacted her learning and language developement, she has no problem communicating!!
Lindsay has great receptive language and understands more than we think she does! Her verbal skills, however are limited to approximately 80 words BUT, she has some words that she has created that have meaning to her, that we call Lindsay Language.
From Taylor's friends, our friends and family, alike, her use of words and the way she says them, are contagious! If you have spent time around us, seen posts on facebook to friends or know Lindsay, you know what I am talking about. Her are some translations:
"BOBBY" - her reference to boys. ie: "Hi Bobby", which she says to her brother, Taylor or to any other boy for that matter!
"CONNIE" - her reference to girls. ie: "Hi Connie", even though it might be my sister, Wendi she is talking to. Girls are Connie's and boys are Bobby's.
"MECUR" - her medicine. ie: "I need my mecur"
"POR" - gas, money, bank, post office. ie: "get your por, mom" meaning get your gas, get your money, get your mail, etc.
"CACA" - sounds bad :) but means coffee! "You want caca, Mom?"
"YOURS ON" - meaning a tv show is on she knows we watch, like Oprah or baseball!
"I FEW" - I am cold, I am hot. You have to guess whether it is cold or hot outside to know which one she is!
"PUT PUT ON" - Put on a bandaid, put on lotion, put on jewelry, etc.
"GET GET YOURS" - a reminder to go get your.....glasses, book, purse, etc. She is our reminder! Tell her once to remind you to do something, you won't hear the end of it until you get 'er done!
"BOO" - her word for beer, butts and boobs and underwear! ie: "You want boo, dad?" or
"Oh, mom, your boo" meaning one of those other three are showing! :)
"SHE-SHE" - her grandmothers names are Shirley and Shirlee, so she calls them Sheshe.
In addition, there are her phrases she uses which most would understand, it is in her delivery that they become contagious. Such as, "you home?", "call your mom", "I want one of those","I want to go to the store!","I want pop!","I want my Bobby (brother)home" and a favorite of most, "you hot!". A favorite memory is when we invited new friends for dinner and Lindsay obviously liked one of them, pointed and said, "you hot"! She doesn't waste any time! When we are golfing, we love to have her keep our score. Walking off the green, she will say "you have 4 mom?" and I say, "I wish".
Even Lindsay has a cuss word too! I do want to say, we don't use the word that sounds like it in our house but after seeing the movie, The Fockers, she picked up that one! And she uses it appropriately too! Quite funny at first, we try to discourage that one!
I'd like to share a letter Lindsay got in the mail from a friend of ours. She was so excited to open the envelope and the letter reinforced to us, that Lindsay touches lives and so does her language!
"My dearest Lindsay,
Here's to all "hot Bobby's and Connie's". I love all those "fockers"! And here's to full tanks of "por". Not to mention, "give me 8" is way better than "10". I love when you give me "4" on the links. You're a great caddie.
I did "call my mom" today. I remembered to do that thanks to you! Tell "She-she" hi.
I think I need a "boo".
I love you and may God continue to bless you. You are wonderful gift from God to me and my family.
Love Lisa and all my Bobby's"
Jer and I smile when we hear Lindsay Language! It is one thing you won't mind catching!
Have a great day!
Lindsay has great receptive language and understands more than we think she does! Her verbal skills, however are limited to approximately 80 words BUT, she has some words that she has created that have meaning to her, that we call Lindsay Language.
From Taylor's friends, our friends and family, alike, her use of words and the way she says them, are contagious! If you have spent time around us, seen posts on facebook to friends or know Lindsay, you know what I am talking about. Her are some translations:
"BOBBY" - her reference to boys. ie: "Hi Bobby", which she says to her brother, Taylor or to any other boy for that matter!
"CONNIE" - her reference to girls. ie: "Hi Connie", even though it might be my sister, Wendi she is talking to. Girls are Connie's and boys are Bobby's.
"MECUR" - her medicine. ie: "I need my mecur"
"POR" - gas, money, bank, post office. ie: "get your por, mom" meaning get your gas, get your money, get your mail, etc.
"CACA" - sounds bad :) but means coffee! "You want caca, Mom?"
"YOURS ON" - meaning a tv show is on she knows we watch, like Oprah or baseball!
"I FEW" - I am cold, I am hot. You have to guess whether it is cold or hot outside to know which one she is!
"PUT PUT ON" - Put on a bandaid, put on lotion, put on jewelry, etc.
"GET GET YOURS" - a reminder to go get your.....glasses, book, purse, etc. She is our reminder! Tell her once to remind you to do something, you won't hear the end of it until you get 'er done!
"BOO" - her word for beer, butts and boobs and underwear! ie: "You want boo, dad?" or
"Oh, mom, your boo" meaning one of those other three are showing! :)
"SHE-SHE" - her grandmothers names are Shirley and Shirlee, so she calls them Sheshe.
In addition, there are her phrases she uses which most would understand, it is in her delivery that they become contagious. Such as, "you home?", "call your mom", "I want one of those","I want to go to the store!","I want pop!","I want my Bobby (brother)home" and a favorite of most, "you hot!". A favorite memory is when we invited new friends for dinner and Lindsay obviously liked one of them, pointed and said, "you hot"! She doesn't waste any time! When we are golfing, we love to have her keep our score. Walking off the green, she will say "you have 4 mom?" and I say, "I wish".
Even Lindsay has a cuss word too! I do want to say, we don't use the word that sounds like it in our house but after seeing the movie, The Fockers, she picked up that one! And she uses it appropriately too! Quite funny at first, we try to discourage that one!
I'd like to share a letter Lindsay got in the mail from a friend of ours. She was so excited to open the envelope and the letter reinforced to us, that Lindsay touches lives and so does her language!
"My dearest Lindsay,
Here's to all "hot Bobby's and Connie's". I love all those "fockers"! And here's to full tanks of "por". Not to mention, "give me 8" is way better than "10". I love when you give me "4" on the links. You're a great caddie.
I did "call my mom" today. I remembered to do that thanks to you! Tell "She-she" hi.
I think I need a "boo".
I love you and may God continue to bless you. You are wonderful gift from God to me and my family.
Love Lisa and all my Bobby's"
Jer and I smile when we hear Lindsay Language! It is one thing you won't mind catching!
Have a great day!
Monday, August 2, 2010
Things are sometimes not what they appear
First of all, thank you for all the kind words of support from everyone! I started journaling years ago, thanks to my Aunt Barbara, who gave me a journal when Lindsay was 6 months old. So thankful for that gift, as it holds precious memories of Lindsay and Taylor! Moments that would have easily slipped my mind otherwise.
In my first blog post,I shared a journal entry from December 2008. To follow up, I'd like to share with you about our day on January 4th, 2009.
It happened to be another Sunday morning and I was reading the paper, enjoying a cup of brew and heard a scream! I ran upstairs to find Lindsay having a terrible seizure. It was not like one we had ever experienced before. It was terrifying to watch and it seemed to be never ending. Even more disturbing was when the seizure stopped, she wasn't able to speak or react to us. She had a blank stare, was non-responsive and had also lost control of her bladder. Jerry had called 911 and by the time they arrived, Lindsay had started responding to us but then had another seizure while they were taking her vitals. I can still remember the three of us, Taylor, Jerry and I standing there, all with a blank stare as well. So surreal, was this really happening to our Lindsay?
As we followed the ambulance to the hospital, I had an "aha moment"! That morning in December had to have been just like this one! She had a bad seizure and we didn't know about it! Which terrified me in another way! She had experienced something tramatic that December morning, couldn't verbalize to us what had happened and then the frustration began for all of us as we tried to understand the way she was acting. She wasn't being stubborn or embarrassed, wanting things her way. Her body and mind were still reeling from a seizure!
Thankfully, to date, we have not had any more Sunday mornings like those. We have friends whose children experience those type of seizures often and I can't imagine!
I have heard the saying "to be kind to those around us" because everyone is experiencing something in the their lives we may not know about. We can be quick to judge or to think we know why, but in reality, things are not always what they appear to be.
Have a happy day!
In my first blog post,I shared a journal entry from December 2008. To follow up, I'd like to share with you about our day on January 4th, 2009.
It happened to be another Sunday morning and I was reading the paper, enjoying a cup of brew and heard a scream! I ran upstairs to find Lindsay having a terrible seizure. It was not like one we had ever experienced before. It was terrifying to watch and it seemed to be never ending. Even more disturbing was when the seizure stopped, she wasn't able to speak or react to us. She had a blank stare, was non-responsive and had also lost control of her bladder. Jerry had called 911 and by the time they arrived, Lindsay had started responding to us but then had another seizure while they were taking her vitals. I can still remember the three of us, Taylor, Jerry and I standing there, all with a blank stare as well. So surreal, was this really happening to our Lindsay?
As we followed the ambulance to the hospital, I had an "aha moment"! That morning in December had to have been just like this one! She had a bad seizure and we didn't know about it! Which terrified me in another way! She had experienced something tramatic that December morning, couldn't verbalize to us what had happened and then the frustration began for all of us as we tried to understand the way she was acting. She wasn't being stubborn or embarrassed, wanting things her way. Her body and mind were still reeling from a seizure!
Thankfully, to date, we have not had any more Sunday mornings like those. We have friends whose children experience those type of seizures often and I can't imagine!
I have heard the saying "to be kind to those around us" because everyone is experiencing something in the their lives we may not know about. We can be quick to judge or to think we know why, but in reality, things are not always what they appear to be.
Have a happy day!
Wednesday, July 28, 2010
My journal entry from December 2008
I came across the following journal writing from December 2008. I have been wanting to start a blog about our life with our daughter and thought this would be a good start.
What makes my life story any different than the average wife and mom with two kids, a house, a dog? That little voice inside my head tells me "not much", but the voice in my heart knows differently.
I first started thinking about my life story when I was asked by my son to proof read his college entrance essay. He chose to write about how it was like growing up with a sister with special needs. In reading his essay, I learned some things that he had been thinking but had never expressed and it made me proud, happy and sad all at the same time. He is only 18 years old and his life has been shaped by experiences, as is everyone's, and it makes up part of his story. It made me realize that if his life was already so different than that of his buddies, mine is too!
Most days I don't feel different than any other mom out there. You love your kids, you do whatever you can for them, care and nurture them and always try to do your best. Then there are those days where I feel all alone, like I am the only one who experieces these feelings of loss, of sadness, of frustration and yes, of anger. I feel ashamed of these feelings and I usually have a self talk that helps them pass but they creep up every once in awhile to remind me of MY story, my life and why it is mine.
One of those days, is today. It is Sunday, a day to sleep in a bit, read the paper, enjoy a quiet cup of coffee. I go in to check on Lindsay and she is lying in a puddle of urine and refuses to get up. She is so strong and stubborn that trying to get her out of bed is a feat in itself. I know down deep she is embarrassed at what has happened and is unable to verbalize her feelings, at the same time, I feel myself getting more frustrated at the thought that she won't help herself. No reasoning, trying to change the subject or anything seems to work. She finally gets up but refuses to take her wet clothes off and shower and sits on the floor in protest. The one side of my brain is telling me to leave her alone, close the door and ignore her behavior. The other side is telling me, she is getting the floor wet, the smell, the mess, etc. That right thing to do and the other right thing to do, in my mind! By this time, Jerry is up and trying to help. She continues to fight, getting more stubborn and aggressive with each suggestion. I find myself going into the other room and taking a big breathe to calm down, knowing that all of us are getting frustrated. We realize that it is time to close the door and let her be. Jer and I hug each other and say "what has gotten into her"? We know that we won't ever know what has triggered her acting this way. Something set her mind in motion; Taylor not being home, being tired, having to go to "homework", being away from home over the weekend, etc. So many things to cause her meltdown and so many reasons why we will never understand her inner frustration.
Later, I go to check on her and she is lying on the floor with her head on her pile of papers and purses, with her arms crossed over her chest and she is sleeping. I look at our little-big girl and shake my head, at her ability to fight for her right to do as she pleases without using words. She awakens and comes to me, almost as though nothing has happened and now willing to take a shower and change clothes. She knows I am upset and uses her sweet manner to help me refocus. She is good at that! I have come away knowing that it was a battle of wills and she won. Yes, I hate to see the stain , the smell, the mess, the inconvenience but I know in the end and in the whole scheme of things, it was just a learning experience and it will be okay.
I realize that although each of us have different experiences with our children, that all parents have those moments of frustration, of battles of will and it doesn't matter if your child is disabled or not, we all have been there. I know it is ok to feel my emotions, that we do our best and that sometimes the best isn't what we have done. All we can do is learn from it and let it go, so that the next time it happens we can do better.
What makes my life story any different than the average wife and mom with two kids, a house, a dog? That little voice inside my head tells me "not much", but the voice in my heart knows differently.
I first started thinking about my life story when I was asked by my son to proof read his college entrance essay. He chose to write about how it was like growing up with a sister with special needs. In reading his essay, I learned some things that he had been thinking but had never expressed and it made me proud, happy and sad all at the same time. He is only 18 years old and his life has been shaped by experiences, as is everyone's, and it makes up part of his story. It made me realize that if his life was already so different than that of his buddies, mine is too!
Most days I don't feel different than any other mom out there. You love your kids, you do whatever you can for them, care and nurture them and always try to do your best. Then there are those days where I feel all alone, like I am the only one who experieces these feelings of loss, of sadness, of frustration and yes, of anger. I feel ashamed of these feelings and I usually have a self talk that helps them pass but they creep up every once in awhile to remind me of MY story, my life and why it is mine.
One of those days, is today. It is Sunday, a day to sleep in a bit, read the paper, enjoy a quiet cup of coffee. I go in to check on Lindsay and she is lying in a puddle of urine and refuses to get up. She is so strong and stubborn that trying to get her out of bed is a feat in itself. I know down deep she is embarrassed at what has happened and is unable to verbalize her feelings, at the same time, I feel myself getting more frustrated at the thought that she won't help herself. No reasoning, trying to change the subject or anything seems to work. She finally gets up but refuses to take her wet clothes off and shower and sits on the floor in protest. The one side of my brain is telling me to leave her alone, close the door and ignore her behavior. The other side is telling me, she is getting the floor wet, the smell, the mess, etc. That right thing to do and the other right thing to do, in my mind! By this time, Jerry is up and trying to help. She continues to fight, getting more stubborn and aggressive with each suggestion. I find myself going into the other room and taking a big breathe to calm down, knowing that all of us are getting frustrated. We realize that it is time to close the door and let her be. Jer and I hug each other and say "what has gotten into her"? We know that we won't ever know what has triggered her acting this way. Something set her mind in motion; Taylor not being home, being tired, having to go to "homework", being away from home over the weekend, etc. So many things to cause her meltdown and so many reasons why we will never understand her inner frustration.
Later, I go to check on her and she is lying on the floor with her head on her pile of papers and purses, with her arms crossed over her chest and she is sleeping. I look at our little-big girl and shake my head, at her ability to fight for her right to do as she pleases without using words. She awakens and comes to me, almost as though nothing has happened and now willing to take a shower and change clothes. She knows I am upset and uses her sweet manner to help me refocus. She is good at that! I have come away knowing that it was a battle of wills and she won. Yes, I hate to see the stain , the smell, the mess, the inconvenience but I know in the end and in the whole scheme of things, it was just a learning experience and it will be okay.
I realize that although each of us have different experiences with our children, that all parents have those moments of frustration, of battles of will and it doesn't matter if your child is disabled or not, we all have been there. I know it is ok to feel my emotions, that we do our best and that sometimes the best isn't what we have done. All we can do is learn from it and let it go, so that the next time it happens we can do better.
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