We will often tell people that as much as we would want things to be different for Lindsay, she has been a blessing and has taught us many things and helped us to be more patient and definitely more flexible. A reminder of that was evident to me this morning.
All of us were ready for our day. Jerry was off to work with a webinar meeting, Lindsay had her lunch box and purses :) and was waiting for her ride to day program and I was ready to go to Hospice and then a lunch date with a friend. Then, comes a seizure and in an instant, our day changed. Lindsay would be staying home.
Every morning I read a daily thought from The Book of Awakening by Mark Nepo and it is amazing that on some days, the quote or daily awakening seems so appropriate for my day. Today's thought was about humility and the "profound bow". After knowing everything I had planned for the day would now be changing, I immiediately thought about what I had just read earlier with my morning coffee. I could have been all stressed out and irritated about our changing plans, wanting "my plans" to be the "most important" and maybe I was for a little bit but knew that if I didn't take a deep breathe and bend, life would bend for me.
The great thing is that Jerry was willing to bend for me, re-arranging his day if need be and we were able to work things out all around. So much easier to bend and be flexible!
Grr, on the other hand, is still starring at me, wanting her morning walk though!
Wednesday, April 13, 2011
Thursday, April 7, 2011
Band-aids
If you know Lindsay, you know she loves her Band-Aids! A friend of my sister, who knows Lindsay's love for the little band of comfort, shared with me a poem written by Shel Silverstein from his book Where the Sidewalk Ends. I thought it was perfect to share with you about her adoration of this "flexible fabric"!
Band-Aids
By Shel Silverstein
I have a Band-Aid on my finger,
One on my knee, and one on my nose,
One on my heel, and two on my shoulder,
Three on my elbow, and nine on my toes.
Two on my wrist, and one on my ankle,
One on my chin, and one on my thigh,
Four on my belly, and five on my bottom,
One on my forehead, and one on my eye.
One on my neck, and in case I might need em
I have a box of thirty-five more.
But oh, I do think it's sort of a pity
I don't have a cut or a sore!
This says it all and it is so true! Many times we've had a Band-Aid on several fingers, toes, shoulders, wrists and all at the same time! We have to hide the Band-Aids around here, as many of you know. Jerry and I are dilusional if we really think Lindsay believes we have no Band-Aids on supply for her. As it has become a "fix all" for times when we don't know how to fix the situation and miraculously, we will say, "I will go and see if we can find a Band-Aid" and wall-laaa, everything seems to be better. She knows we have a stash and is totally playing us!
In the end, regardless of whether she has a cut or sore, they bring her comfort. They also seem to help us solve an issue that we can't understand or that she can't express. As the slogan on the Band-Aid box claims,
"You're going to be just fine!"
If you see a sale on Band-Aids, let me know!
Band-Aids
By Shel Silverstein
I have a Band-Aid on my finger,
One on my knee, and one on my nose,
One on my heel, and two on my shoulder,
Three on my elbow, and nine on my toes.
Two on my wrist, and one on my ankle,
One on my chin, and one on my thigh,
Four on my belly, and five on my bottom,
One on my forehead, and one on my eye.
One on my neck, and in case I might need em
I have a box of thirty-five more.
But oh, I do think it's sort of a pity
I don't have a cut or a sore!
This says it all and it is so true! Many times we've had a Band-Aid on several fingers, toes, shoulders, wrists and all at the same time! We have to hide the Band-Aids around here, as many of you know. Jerry and I are dilusional if we really think Lindsay believes we have no Band-Aids on supply for her. As it has become a "fix all" for times when we don't know how to fix the situation and miraculously, we will say, "I will go and see if we can find a Band-Aid" and wall-laaa, everything seems to be better. She knows we have a stash and is totally playing us!
In the end, regardless of whether she has a cut or sore, they bring her comfort. They also seem to help us solve an issue that we can't understand or that she can't express. As the slogan on the Band-Aid box claims,
"You're going to be just fine!"
If you see a sale on Band-Aids, let me know!
Tuesday, March 1, 2011
It is just what she does
Lindsay makes people feel special. It is just what she does!
Yesterday while running errands, we were in a traffic line waiting to get out of the shopping center. There was quite a line of cars waiting to turn right and at the corner was a gentlemen holding a sign asking for help. A common sight we see these days. Lots of people struggling to make ends meet. I noticed that he was very friendly, waved at people in each car. I don't know if those people responded but he kept up with every car that came close. We were drawing closer to making our turn and I notice that Lindsay waved her hand to him, gestering for him to come see. "Come see my Babygrr" she says with her hands. My first reponse was "oh, no, Lindsay". I look up and he has an excited look on his face as though he may have hit the jackpot, or so I thought.
We had taken Grr to the park for a walk and it was a beautiful day, windows rolled down, sun shining brightly. He comes to the window and I tell him, in an apologetic way "she wants to show you her dog", thinking he is expecting me to hand him a little cash. He then says, "oh, thank you, you have such a cute little dog. Is it a Cockopoo?" "No, she is a poodle", I say and he begins to tell me that his friend's goat just had babies. I immediately realize that although a little cash would have been nice, he was just so pleased to be talking with someone, to connect with someone, like we all do.
The cars were moving forward and so was our saying goodbye. He said "thank you for showing me your dog" and we told him to have a great day and as he walked away, I noticed a little more happiness all around. I had expected an upcomfortable situation, maybe he expected some cash but what happened was that Lindsay reached out to someone with no expectations, no judgements, only belief that connecting to others is sometimes the most important thing.
She was kind for no reason......it is just what she does!
Yesterday while running errands, we were in a traffic line waiting to get out of the shopping center. There was quite a line of cars waiting to turn right and at the corner was a gentlemen holding a sign asking for help. A common sight we see these days. Lots of people struggling to make ends meet. I noticed that he was very friendly, waved at people in each car. I don't know if those people responded but he kept up with every car that came close. We were drawing closer to making our turn and I notice that Lindsay waved her hand to him, gestering for him to come see. "Come see my Babygrr" she says with her hands. My first reponse was "oh, no, Lindsay". I look up and he has an excited look on his face as though he may have hit the jackpot, or so I thought.
We had taken Grr to the park for a walk and it was a beautiful day, windows rolled down, sun shining brightly. He comes to the window and I tell him, in an apologetic way "she wants to show you her dog", thinking he is expecting me to hand him a little cash. He then says, "oh, thank you, you have such a cute little dog. Is it a Cockopoo?" "No, she is a poodle", I say and he begins to tell me that his friend's goat just had babies. I immediately realize that although a little cash would have been nice, he was just so pleased to be talking with someone, to connect with someone, like we all do.
The cars were moving forward and so was our saying goodbye. He said "thank you for showing me your dog" and we told him to have a great day and as he walked away, I noticed a little more happiness all around. I had expected an upcomfortable situation, maybe he expected some cash but what happened was that Lindsay reached out to someone with no expectations, no judgements, only belief that connecting to others is sometimes the most important thing.
She was kind for no reason......it is just what she does!
Tuesday, February 22, 2011
Change isn't so bad
Last weekend, Lindsay and I traveled with another mom, daughter and friend to watch Taylor and the Mesa State Baseball team play in St. George, UT. At first, Lindsay was excited about going to "Bobby ball" but as the time approached to leave, I could see her start to worry about the change in her daily routine.
Change in routine has always been a little hard for Lindsay. As she has gotten older, those changes or going to new places seem to affect her even more. She likes her own bed, to know where her things are, know where Babygrr is and who will watch her and we can't forget her purses, papers and tv!
On our drive there, she was full of questions as to where dad was, "go home?", where the Babygrr was, etc. We followed our friends and stopped for a bite to eat and she was so withdrawn and shy, even though she knew them. Upon settling in for the night, she had trouble falling asleep. She talked to herself and to me for quite awhile before finally giving in to sleep. The next morning, we stopped at the outlet stores and she was very upset that she didn't have bandaids, a wrap for her knee and chapstick. After patience from everyone, we made a special stop and all seemed good with the world after she had those little comfort items.
Her comfort level with the other girls, who are close to her in age, began to increase and it was so cute watching her want to be like them too. She wanted to wear flip flops like them, have her feet up on the bleachers and I even saw a little more independence too. She cheered on the team, loved being part of what the other girls were doing, gave out hugs, held hands and all of a sudden, the change wasn't so bad.
The next morning, however, change came quickly. The games were canceled due to the rain and our plans changed from going to shop and to "ball", to getting in the car and driving home. With tears in her eyes, she looked at me and said "I want to go to the store and go Bobby ball". For quite awhile, she was pretty upset that we weren't stopping at the store or going to the ball game. The questions started up again about what dad was doing, Babygrr, the "Connie's" in the other car and when we would be going to the store.
I plugged in her DVD and she watched the Friends Season 5 all the way and it seemed to settle her mind and also made her giggle. Made me want to watch too! None of us like change and for some, little changes are harder to deal with but with a little patience and acceptance from everyone around, change isn't so bad sometimes! She loved feeling special, like one of the girls. Don't we all!
Change in routine has always been a little hard for Lindsay. As she has gotten older, those changes or going to new places seem to affect her even more. She likes her own bed, to know where her things are, know where Babygrr is and who will watch her and we can't forget her purses, papers and tv!
On our drive there, she was full of questions as to where dad was, "go home?", where the Babygrr was, etc. We followed our friends and stopped for a bite to eat and she was so withdrawn and shy, even though she knew them. Upon settling in for the night, she had trouble falling asleep. She talked to herself and to me for quite awhile before finally giving in to sleep. The next morning, we stopped at the outlet stores and she was very upset that she didn't have bandaids, a wrap for her knee and chapstick. After patience from everyone, we made a special stop and all seemed good with the world after she had those little comfort items.
Her comfort level with the other girls, who are close to her in age, began to increase and it was so cute watching her want to be like them too. She wanted to wear flip flops like them, have her feet up on the bleachers and I even saw a little more independence too. She cheered on the team, loved being part of what the other girls were doing, gave out hugs, held hands and all of a sudden, the change wasn't so bad.
The next morning, however, change came quickly. The games were canceled due to the rain and our plans changed from going to shop and to "ball", to getting in the car and driving home. With tears in her eyes, she looked at me and said "I want to go to the store and go Bobby ball". For quite awhile, she was pretty upset that we weren't stopping at the store or going to the ball game. The questions started up again about what dad was doing, Babygrr, the "Connie's" in the other car and when we would be going to the store.
I plugged in her DVD and she watched the Friends Season 5 all the way and it seemed to settle her mind and also made her giggle. Made me want to watch too! None of us like change and for some, little changes are harder to deal with but with a little patience and acceptance from everyone around, change isn't so bad sometimes! She loved feeling special, like one of the girls. Don't we all!
Friday, February 4, 2011
Epiphany in Child Pose
While in child pose at yoga this morning, I had an epiphany! While I was supposed to be concentrating on my breathing and setting my intention, I was thinking about my day yesterday and how I was struggling internally with some situations, relationships, making assumptions, wondering why when you try and try, why some things just aren't easy as they should be.
I realized as I started my breathing that I allowed my thoughts to transfer onto Lindsay yesterday. I got upset that she found my new hiding place for gum, that she had 15 purses on her bed. Yes, really 15! And they were full of papers, packed to the brim. I got irritated that she lost her ring while at her day program and that she wanted to "put-put" on band aids on her fingers, when she already had them on three of her fingers already. By the end of the day, I was grumpy, short tempered and cried, not knowing why I was acting this way.
What I realized is that I transferred my stress, my frustrations onto my sweet daughter, when it had nothing to do with her. Yes, I wish things could be easier but it is what it is and on a daily basis, these things are what we live. They actually make me laugh most days and help me realize, that those little things really don't matter much. Why is it that we often treat those we love in a wrong way because of something that is totally unrelated? We transfer our frustrations onto them when it is really about something else. I let those thoughts and frustrations about other things take control, which controlled how I acted.
Thanks for sharing in my self-therapy session. I try to be positive most of the time with my posts but wanted to share my feelings because we all have times when we appear to be upset about something, when in fact, if we stop and breathe, it is really about something else we just haven't "opened the door" to.
Thank God for Jerry, who has patience when I don't, who knows to take over when I can't, who knows me better than I know myself sometimes. Thank God for Lindsay, who teaches me literally daily, whose sweet and kind nature gives me a hug when I need it the most, who inside might me calling me a "focker" but loves me just the same.
Oh, and thank God for Child Pose!
I realized as I started my breathing that I allowed my thoughts to transfer onto Lindsay yesterday. I got upset that she found my new hiding place for gum, that she had 15 purses on her bed. Yes, really 15! And they were full of papers, packed to the brim. I got irritated that she lost her ring while at her day program and that she wanted to "put-put" on band aids on her fingers, when she already had them on three of her fingers already. By the end of the day, I was grumpy, short tempered and cried, not knowing why I was acting this way.
What I realized is that I transferred my stress, my frustrations onto my sweet daughter, when it had nothing to do with her. Yes, I wish things could be easier but it is what it is and on a daily basis, these things are what we live. They actually make me laugh most days and help me realize, that those little things really don't matter much. Why is it that we often treat those we love in a wrong way because of something that is totally unrelated? We transfer our frustrations onto them when it is really about something else. I let those thoughts and frustrations about other things take control, which controlled how I acted.
Thanks for sharing in my self-therapy session. I try to be positive most of the time with my posts but wanted to share my feelings because we all have times when we appear to be upset about something, when in fact, if we stop and breathe, it is really about something else we just haven't "opened the door" to.
Thank God for Jerry, who has patience when I don't, who knows to take over when I can't, who knows me better than I know myself sometimes. Thank God for Lindsay, who teaches me literally daily, whose sweet and kind nature gives me a hug when I need it the most, who inside might me calling me a "focker" but loves me just the same.
Oh, and thank God for Child Pose!
Sunday, January 23, 2011
My husband is so smart!
Since a few weeks ago when I wrote about Lindsay wanting to keep her tv and lights on at night, it has been a learning experience and a reminder to me that sometimes my husband is so smart!
We did learn to let it go, let her keep the tv on and not worry, however we did unscrew all the light bulbs! Some nights she would keep it on with no volume and other nights, we would wake from a deep sleep to hear her tv blaring with noise from C-Span or the Spanish channel!
She seemed to be adjusting during the day to less sleep until the seizures started to occur with frequency. She had one bad seizure followed by a day when she had four. Thinking she may have an infection or cold that could have triggered them, we went to our regular doctor to find her in good health but due to a lack of sleep, it could have triggered the onset of more seizures. We also saw her neurologist and after 2 years on one medication, which hasn't worked as well as it should, we are now trying a new one! Quite a process and hoping for better management!
But back to the tv! I think she just likes to have it on, as it gives her comfort of some kind. The volume thing is what we needed to figure out. She could turn the volume up on her remote but wouldn't turn it down. So to ensure OUR better nights sleep.....Jerry figured out a solution! He duct taped her remote with only the volume and channel buttons visible. Now she can turn up the volume only so far, can change channels to her hearts desire, while we have a secret remote where we can lock the volume control!
She still has her tv at night, a little volume AND we both get to sleep without learning spanish in our sleep!
We did learn to let it go, let her keep the tv on and not worry, however we did unscrew all the light bulbs! Some nights she would keep it on with no volume and other nights, we would wake from a deep sleep to hear her tv blaring with noise from C-Span or the Spanish channel!
She seemed to be adjusting during the day to less sleep until the seizures started to occur with frequency. She had one bad seizure followed by a day when she had four. Thinking she may have an infection or cold that could have triggered them, we went to our regular doctor to find her in good health but due to a lack of sleep, it could have triggered the onset of more seizures. We also saw her neurologist and after 2 years on one medication, which hasn't worked as well as it should, we are now trying a new one! Quite a process and hoping for better management!
But back to the tv! I think she just likes to have it on, as it gives her comfort of some kind. The volume thing is what we needed to figure out. She could turn the volume up on her remote but wouldn't turn it down. So to ensure OUR better nights sleep.....Jerry figured out a solution! He duct taped her remote with only the volume and channel buttons visible. Now she can turn up the volume only so far, can change channels to her hearts desire, while we have a secret remote where we can lock the volume control!
She still has her tv at night, a little volume AND we both get to sleep without learning spanish in our sleep!
Tuesday, January 11, 2011
Is there such a thing?
Is there such a thing as Sugarless Gum poisoning? I wonder.
I like gum, Lindsay likes gum. She is usually good with it, when it is monitored. But like when you start eating certain candy you like, it is hard to stop because it tastes so good. Just one more piece! Well, that is what it is like with Lindsay and gum.
I ask this question because as I was getting her ready for bed last night, noticed her purse open (well, one of her purses) with three packages of gum, all empty. The little wrappers all neatly tucked inside as well. Yikes, her poor stomach! I found no evidence of her spitting the gum out and I wonder what it must feel like having all that gum in your system.
Note to self.....find a better hiding spot!
I like gum, Lindsay likes gum. She is usually good with it, when it is monitored. But like when you start eating certain candy you like, it is hard to stop because it tastes so good. Just one more piece! Well, that is what it is like with Lindsay and gum.
I ask this question because as I was getting her ready for bed last night, noticed her purse open (well, one of her purses) with three packages of gum, all empty. The little wrappers all neatly tucked inside as well. Yikes, her poor stomach! I found no evidence of her spitting the gum out and I wonder what it must feel like having all that gum in your system.
Note to self.....find a better hiding spot!
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