"The Kayla" - Saturday, May 28, 2011 - "Grabbing a Break"
Kayla Quote: "May you always walk in sunshine
slumber warm when night winds blow
May you always live with laughter
for a smile becomes you so."
Short Synopsis: Kayla finds comfort with her mother and with anyone who will help her out of her pain. Why would God give one person so much pain?
Long Story: I have been washing dishes by hand as our dishwasher has gone kaput! Pops and Lori are the best grandparents. They give and give as best they can to two very desperate and worn out parents who are trying to keep their adult daughter alive. Kayla's heart is getting weaker and weaker and no one can stop the downward slide. The waiting game is a desperate one. You keep hoping you can keep all the other organs in good shape as you wait - the brain, the liver, the kidneys, the digestive system. Sometimes it becomes clinical. I wish there had tours for high school students to come to the hospitals to see all these sad people languishing as they wait for an organ...as they slowly slip away. The need for more organs is astronomical and it's the young who donate the most.
Kayla is unusual as there are not that many young people on the waiting list. Mostly it is men in their 50s and 60s who need a heart. Not too many 26-year-olds but still....there are some. On good days, Kayla travels around the hall to introduce herself to the other youngsters who need transplanted hearts. All of their stories are unique and sad yet they have spirit and desire life, however they can get it. They have their dreams for every single day and every single breath is precious. You gather strength from each new patient you meet. They know your painful journey as you know theirs.
- - - - - - -
Babee is hiding under my bed. He has a favorite spot that he nestles into. It's a place where I have stored a soft blanket. All three cats fight over this spot. When one finds a nice sleeping space, he leaves his scent there and the others want to garner some napping time there. Napping places are coveted especially if they are safe. Babee is the king of finding safe spaces.
I set up my bike and go around the neighborhood for a few miles. The triathlon is only a few weeks away and I wonder if I can compete. It feels absolutely grand. I am surprised at my physical strength. Must be all those steps I have climbed up in the back stairwells of the hospital. I am more fit than I thought.
I text Jeffery and we go to Town & Country to buy flowers together for our gardens. Then we come back and he gets a complete tour of my flower and vegetable garden. I show him the baby catalpa tree that is now 10 feet tall but very skinny. It was a seed that found its way there at the side of the fence of the vegetable garden a few years previously. I had even tried to pull it up as a weed until I realized it was a young tree spawned from one of Connecticut's tallest catalpa trees in our front yard. That catalpa has been hit by lightening quite a few times and is still with us.
Last summer there was a huge explosion and a fire in that catalpa when a sudden thunderstorm came up and lightening struck it. Thomas and Mike were in the livingroom and they heard and saw it.
Standing next to Jeffery now, I hug the thin baby tree. He laughs as I say, "I am a tree hugger and lover!"
We drive back to his house and I give him ideas for his garden. He considers me some sort of expert though one always learns new stuff all the time. No one is truly a knower of all when it comes to gardening.
As we continue our plant inspections, Daniel shows up after a 5 mile run and drives me to Nature's Temptations first, "for a few minutes." Since it is his place of work, he cannot seem to leave without a few minutes of working, even on his day off!
I want to go back to my house!
Daniel entertains a family, mixing his lunch juice drink from the juice bar. The cocktail is full of many things - vegetables and fruit and he skillfully grinds them up in special machines....kale, celery, coconut water, mango, pinneapple, blueberries, peanut butter. This is his liquid lunch but he gives samples to the family in little cups.
I am growing impatient but I think we are about to leave....NO! The family wants their own juice drinks! Aargghhh!
------------------
At home, I try to straighten out the bedskirt and discover the burrowing Babee! I touch his soft, velvety fur...
Kayla has a long list of special things she wants and on it is a coffee coolata made with skim milk. The closest place to get it is in Yonkers off the Saw Mill Parkway. I discover this on-line. I get dizzy...she has so many requests of things that she wants.
Finally arrive at the hospital. I go to inspect the 5th floor "cozy corner." On the sill, the chalk board eraser has been shredded, probably by some small kid who has played with it. There are only a few small bits of chalk left.
I scribble - "Beth - You still here? Kayla progresses. How are you and your Mom? Steph"
The waiting room is totally packed but it is not the same. Our special hospital family has dispersed and we have given up our corner. Every seat in the large room is filled with people waiting. In our corner, another Jewish family has taken up residence. It is empty now but there are blankets strewn across the chairs and Hebrew reading materials are scattered about. I feel empty.
Kayla is having a decent day despite the pain from last night. She has an oxygen canular in her nose to help her breathing.
I go to Famiglias and get her a slice of pizza. The little eatery in the big common space at the front entrance to the hospital is closed for renovations so now they keep the 2nd floor cafeteria open on the weekends, but there is no pizza there...the absolute requested item today!
I email Mordechai -
Mordechai:
I have been busy with Kayla's care at the hospital, plus have my most wondeful in-laws here spelling me so I have been able to do gardening and rest and loads of other demanding work! I have not been able to visit your mom the last bunch of days.
Am wondering - is she still in the ICU or have they moved her to a long term facility?
Beth and Steve's mom got a blood clot in her heart a few days ago. Have not been able to get the latest update on them, even though I have called.
Regards,
Stephanie
- - - - - - - - - -
I go to the end of the hallway...to my special reprieve...to the best spot in the hospital. I want to see the shimmering light reflect off the Hudson River and the glistening George Washington Bridge. There is a round Jewish man studying his bible and I am disappointed. He looks up and he is annoyed with me as well.
I guess I have to share my place. Damn...
- - - - - - -
Pip and Mama hawk are pulling apart food together. Shredded pieces are swallowed with delight. You cannot even tell what they are eating but there are feathers everywhere. Must be a delicious pidgeon.
Kayla Quote: "May you always walk in sunshine
slumber warm when night winds blow
May you always live with laughter
for a smile becomes you so."
Short Synopsis: Kayla finds comfort with her mother and with anyone who will help her out of her pain. Why would God give one person so much pain?
Long Story: I have been washing dishes by hand as our dishwasher has gone kaput! Pops and Lori are the best grandparents. They give and give as best they can to two very desperate and worn out parents who are trying to keep their adult daughter alive. Kayla's heart is getting weaker and weaker and no one can stop the downward slide. The waiting game is a desperate one. You keep hoping you can keep all the other organs in good shape as you wait - the brain, the liver, the kidneys, the digestive system. Sometimes it becomes clinical. I wish there had tours for high school students to come to the hospitals to see all these sad people languishing as they wait for an organ...as they slowly slip away. The need for more organs is astronomical and it's the young who donate the most.
Kayla is unusual as there are not that many young people on the waiting list. Mostly it is men in their 50s and 60s who need a heart. Not too many 26-year-olds but still....there are some. On good days, Kayla travels around the hall to introduce herself to the other youngsters who need transplanted hearts. All of their stories are unique and sad yet they have spirit and desire life, however they can get it. They have their dreams for every single day and every single breath is precious. You gather strength from each new patient you meet. They know your painful journey as you know theirs.
- - - - - - -
Babee is hiding under my bed. He has a favorite spot that he nestles into. It's a place where I have stored a soft blanket. All three cats fight over this spot. When one finds a nice sleeping space, he leaves his scent there and the others want to garner some napping time there. Napping places are coveted especially if they are safe. Babee is the king of finding safe spaces.
I set up my bike and go around the neighborhood for a few miles. The triathlon is only a few weeks away and I wonder if I can compete. It feels absolutely grand. I am surprised at my physical strength. Must be all those steps I have climbed up in the back stairwells of the hospital. I am more fit than I thought.
I text Jeffery and we go to Town & Country to buy flowers together for our gardens. Then we come back and he gets a complete tour of my flower and vegetable garden. I show him the baby catalpa tree that is now 10 feet tall but very skinny. It was a seed that found its way there at the side of the fence of the vegetable garden a few years previously. I had even tried to pull it up as a weed until I realized it was a young tree spawned from one of Connecticut's tallest catalpa trees in our front yard. That catalpa has been hit by lightening quite a few times and is still with us.
Last summer there was a huge explosion and a fire in that catalpa when a sudden thunderstorm came up and lightening struck it. Thomas and Mike were in the livingroom and they heard and saw it.
Standing next to Jeffery now, I hug the thin baby tree. He laughs as I say, "I am a tree hugger and lover!"
We drive back to his house and I give him ideas for his garden. He considers me some sort of expert though one always learns new stuff all the time. No one is truly a knower of all when it comes to gardening.
As we continue our plant inspections, Daniel shows up after a 5 mile run and drives me to Nature's Temptations first, "for a few minutes." Since it is his place of work, he cannot seem to leave without a few minutes of working, even on his day off!
I want to go back to my house!
Daniel entertains a family, mixing his lunch juice drink from the juice bar. The cocktail is full of many things - vegetables and fruit and he skillfully grinds them up in special machines....kale, celery, coconut water, mango, pinneapple, blueberries, peanut butter. This is his liquid lunch but he gives samples to the family in little cups.
I am growing impatient but I think we are about to leave....NO! The family wants their own juice drinks! Aargghhh!
------------------
At home, I try to straighten out the bedskirt and discover the burrowing Babee! I touch his soft, velvety fur...
Kayla has a long list of special things she wants and on it is a coffee coolata made with skim milk. The closest place to get it is in Yonkers off the Saw Mill Parkway. I discover this on-line. I get dizzy...she has so many requests of things that she wants.
Finally arrive at the hospital. I go to inspect the 5th floor "cozy corner." On the sill, the chalk board eraser has been shredded, probably by some small kid who has played with it. There are only a few small bits of chalk left.
I scribble - "Beth - You still here? Kayla progresses. How are you and your Mom? Steph"
The waiting room is totally packed but it is not the same. Our special hospital family has dispersed and we have given up our corner. Every seat in the large room is filled with people waiting. In our corner, another Jewish family has taken up residence. It is empty now but there are blankets strewn across the chairs and Hebrew reading materials are scattered about. I feel empty.
Kayla is having a decent day despite the pain from last night. She has an oxygen canular in her nose to help her breathing.
I go to Famiglias and get her a slice of pizza. The little eatery in the big common space at the front entrance to the hospital is closed for renovations so now they keep the 2nd floor cafeteria open on the weekends, but there is no pizza there...the absolute requested item today!
I email Mordechai -
Mordechai:
I have been busy with Kayla's care at the hospital, plus have my most wondeful in-laws here spelling me so I have been able to do gardening and rest and loads of other demanding work! I have not been able to visit your mom the last bunch of days.
Am wondering - is she still in the ICU or have they moved her to a long term facility?
Beth and Steve's mom got a blood clot in her heart a few days ago. Have not been able to get the latest update on them, even though I have called.
Regards,
Stephanie
- - - - - - - - - -
I go to the end of the hallway...to my special reprieve...to the best spot in the hospital. I want to see the shimmering light reflect off the Hudson River and the glistening George Washington Bridge. There is a round Jewish man studying his bible and I am disappointed. He looks up and he is annoyed with me as well.
I guess I have to share my place. Damn...
- - - - - - -
Pip and Mama hawk are pulling apart food together. Shredded pieces are swallowed with delight. You cannot even tell what they are eating but there are feathers everywhere. Must be a delicious pidgeon.
Hello:
ReplyDeleteWhere are you writing from? Which country?
Do you have someone in your family who needs a heart transplant?
Regards,
Stephanie
Hi Stephanie
ReplyDeleteIt's neener here.. Saidhbhin and I were talking to you and Shake Your Tail Feathers while watching the fireworks if you remember the night she went to another room to watch. We at Pipsters think of you often. Just wanted you to know that and am glad to see you posting again.
Hi Neener!
ReplyDeleteGreat to hear from you! Do they know where the Pipster is? Did you follow the two new baby hawks this year? I have 2-3 little notebooks with extensive handwritten notes to write from re: my daughter's stay at Columbia and her quest for a new heart transplant. Am on vacation in Virginia as I write this. Am going to be posting this week. The blog (book) is almost done. Will publish it in paperback soon. I have another work for sale "Grandma's Charms" if you like my memoir style of writing - you just have to put in Google "Stephanie Trolle author" and it will come up.
My daughter, Kayla, is the most beautiful creature in the world to me and a wonderful story to tell.
How are you doing? Regards, Stephanie
Hi Stephanie :)
DeleteBelieve it or not, I found this just today! I was so happy you responded, even if I did just find it!
I stopped following Boo and Scout last year, along with Saidhbhin. The new moderator, pondove, had banned us both. It took such a toll on Saidhbhin, I was concentrating on her health. The stress of it all took such a toll on her health she was almost hospitalized. She still gets so upset. Christmas morning I found a chat where two old friends had posted earlier. I left a message saying Hello, and I missed them, and Merry Christmas both to them and the room. Later on I found out it was the NYT chat as one friend said she saw my post. We were so happy I told Saidh, but later on Christmas Day, when we were both 'talking' to someone, we were both banned again! Saidh is still so upset about it and having more health problems as a result. I am still so sorry I found that chat. It raised her spirits so much~ only to have her heart ripped out again! That chat room was her joy in life, the people, the knowledge, the joy of painting again~ gone~ again!! Needless to say, there were, and still are strong feelings.
I could tell Kayla is a beautiful spirit, but, I am still left wondering if all went well and she was released ~ or if there were complications. The way both of you just disappeared... {loss for words} I had left my contact information a few times, and still no update or contact.
If you can't locate it, you can always contact Saidh. thru her page... pipatnyu.blogspot.com We still ask each other if there has been any contact or if anyone has heard how "Shakey" is. The fourth of July hasn't been the same since we lost contact with the two of you!
neener on chat