Sunday, November 30, 2014

The Invisible String --- By: Patrice Karst

The Invisible String is a simply story that reminds children and adults they are never truly alone. As the mother in this story explains, "People who love each other are always connected by a very special String made of love. Even though you can't see it with your eyes, you can feel it deep in your heart and know that you are always connected to the ones you love."

We have been having this conversation, in different ways, around our house quite a bit lately...I decided I wanted to share the story with you.

Liza and Jeremy, the twins, were asleep one calm and quiet night.

Suddenly it began to rain very hard. Thunder rumbled until it got so loud that it woke them up.
"Mommy, Mommy!" they cried out as they ran to her.

"Don't worry you two! It's just the storm making all that noise. Go back to bed." 
"We want to stay close to you," said Jeremy. "We're scared!"
Mom said, "You know we're always together, no matter what."
"But how can we be together when you're out here and we're in bed?" said Liza.

Mom held something right in front of them and said, "This is how."

Rubbing their sleepy eyes, the twins came closer to see what Mom was holding. "I was about your age when my Mommy first told me about the INVISIBLE STRING."

"I don't see a string," said Jeremy.
"You don't need to see the Invisible String. People who love each other are always connected by a very special String made of love."
"But if you can't see it, how it's there?" asked Liza.
"Even though you can't see it with your eyes, you can feel it with your heart and know that you are always connected to everyone you love."

"When you're at school and you miss me, your love travels all the way along the String until I feel it tug on my heart.:
"And when you tug it right back, we feel it in our hearts," said Jeremy.

"Does Jasper the cat have an Invisible Sting?" Liza asked. 
"She sure does," said Mom.
"And best friends like me and Lucy?" asked Liza.
"Best friends too!"
"How far can the String reach?"
"Anywhere and everywhere," Mom said.

"Would it reach me even if I were a submarine captain deep in the ocean?" asked Jeremy. "Yes," Mom said, "Even there."
"Or a mountain-climber?"
"Even there."

"A ballerina in France?"
"Even there."
"A jungle-explorer?"
"Even there."

"How about an astronaut out in space?"
"Yes, even there."

Then Jeremy quietly asked, "Can my String reach all the way to Uncle Brian in Heaven?"
"Yes...even there."

"Does the String go away when you're mad at us?"
"Never," said Mom. "Love is stronger than anger, and as long as love is in your heart, the String will always be there."

"Even when you get older and can't agree about things like what movie to see...
...or who gets to ride in the front seat....

...or what time to go to bed.
Oh! that's right! You two should be in bed!"
And with that, they all laughed as Mom chased the twins back to their beds.

Within a few minutes, they were asleep even though the storm was still making the same loud noises outside.
As they slept, they started dreaming of all the Invisible Strings they have, and all the Strings their friends have,
and THEIR friends have,
and THEIR friends have,
until everyone in the world was connected 
by Invisible Strings.
And from deep inside, they now could clearly see... one is ever alone.

This book has been read around our house for the past few years and comes out from time to time....sometimes more often then others....remember...treasure yesterday, dream of tomorrow, live for today. 

A Gift of Love

With the help of Beth and Regali Jewelry, Ian gave Becca a Silver Fingerprint charm. The charm was made from the clay where Ian pressed his thumb. Ian decided on the other side of the charm to put B + I. In addition, a small stone can go on it and Ian decided on a crystal for their birthstone. Beth came for one of her visits on Friday, charm in hand and Ian could not wait to give it to his sister. The smiles on their faces were priceless, Becca knew right away that it was his thumb print. Off came her necklace for the charm to be added to she will always have him with her...right around her neck.

Friday, November 21, 2014

As Thanksgiving Approaches

Thanksgiving! Some may have thoughts of leaves that have changed color and are falling from trees. Some many think of visiting with family and friends, and watching the Macy's Thanksgiving Day Parade either in person or on TV.  And don't forget the traditional football games on television. We can't forget the memories of turkey dinners or whatever your family eats. 

According to Edward F. Gibbson, Jr., Thanksgiving Day is more than a day of fond memories, parades, football, and special dinners. It is also a day of thanks. On Thanksgiving Day, we are reminded of the bounty of treasures that is a part of our lives. It is important to remember that the word thanksgiving is composed of two words: thanks and giving. It should have a broader significance, we should remember to give thanks and to share and give. The holiday reminds us to share our economic and material wealth, and to share also our time and talents with other people who could use our help. In terms of thought and deed, the holiday of Thanksgiving gives us an enriched perspective on the abundance in our lives. 

Happy Thanksgiving. Today is a day of family...a day to be thankful. For us it is just not one day, we are thankful everyday. Thankful for all the time we have together, family game nights, family movie nights, Wednesday night family dinners, the laughs, the cries and the smiles. Thankful for all our family and friends who have been there with us since the beginning of our journey...checking in to see how we are all doing and what we need. Thankful for all our nurses, yes even though we get frustrated with them sometimes. Thankful for our Gilchrist team who has helped us to get where we are in our journey and will continue to help us through the next phases of our journey, which we know will not be easy. Thankful for all the teachers and staff at Chatsworth Elementary School and Franklin Middle School who have taught our kids and have helped them as we go through this. We are thankful for all of the doctors and all the people in the medical field we have met along the way and their continued efforts to help us find a diagnosis for Ian as well as guiding us along the way. Thankful for all of the people who have shared our story helping us to educate others. We are thankful for all the different organizations who have reached out to us along our journey and made our lives more joyous. We are thankful for our village.

We know our journey is not over...and perhaps the hardest is yet to come. We are thankful for everyday we are together knowing that in time it will change. Ian is holding his own but trying to figure things out, asking questions about Heaven (Do they have TV's and popcorn there?; Can he take his fan with him and how will it get there?) He has expressed that when he gets sick again he is not sure he wants to go to the hospital to get better, that he is OK going to Heaven. He is testing the waters to see how we will respond. Ian has been letting us know how we should continue to treat each other as life goes on. We know he doesn't realize what he is doing and we are grateful for that. He continues to have school thru home and hospital as well as many visitors through Gilchrist, Chai Lifeline, as well as friends. Enjoying things as he can, yet napping more often. 

Don't just take today to be grateful for the things in your grateful for them everyday. As stated above, remeber the bounty of treasures that is a part of our lives. It is important to remember that the word thanksgiving is composed of two words: thanks and giving. It should have a broader significance, we should remember to give thanks and to share and give. 

We are grateful for all who have been a part of our journey and our village and know we will continue to be grateful for you all as our journey continues. Happy Thanksgiving... Treasure, Dream, Live

Tuesday, November 18, 2014

Camp Shirt Day

While I can't wear both, they both hold a special place in our hearts. Camp Simcha Special and Camp Louise have given each one of our children a place to be normal, to forget, even for a few weeks...if that is possible.

Camp Simcha Special, is a place where Ian and other children and teens with a range of chronic illnesses can go for two weeks of fun, friendship, and where anything is possible. There are non-stop activities, bunk spirit, singing and dancing; for these kids...if there is a way, it is done. From baseball to photography and videography, arts and crafts to boating, swimming to rockety, talent shows to Color War, each camper gets to experience things they have done before and enjoy new things. After all, isn't that what camp is about...sure is! Well at Camp Simcha Special each of those activities is developed in an environment created with these children in mind. Each camper has his own trained counselor... we love you Danny, a guide and special friend who makes sure every minute of camp life is wonderful. It's not a place where illness means you can't but you can, everything is fun. With all of that in mind, they have a wonderful medical and administrative staff who are experts in caring for children with chronic illnesses. Due to the staff, there are children dependent on wheelchairs or walkers, respirators, gastric tubes and other medical equipment. Ian can do anything there, nothing gets in his way..he is "normal", just one of the boys.

Camp Louise, is a place where Becca can go to be normal, forget about life at home. There are non-stop activities, arts and crafts, photography, videography, outdoor adventure, athletics, dance and drama, a radio station and music studio, and swimming. Each bunk has about 12 campers with 2 or more college-aged counselors...Becca's counselors last year were wonderful. With Becca being a 1st time camper as well as our "normal" they made sure she felt safe, had a place to talk if she wanted to be able to share about her family or not share about her family. It was all about her....whatever she needed. Camp Louise took us under their wings and helped all us give Becca three weeks of fun, life-long friendships and it being about her, being "normal" and just one of the girls. 

For Brian and I, there are no words for what these two wonderful camps have done for our family. We know there is a place where they are "home". We know they are cared for with so much love. We know they are just one of the lucky ones...just one of the boys...just one of the girls.

Thursday, November 13, 2014

One Like No Other

She goes through things others don't. She goes through things a child should not have to go through. She watches her sibling go through things unimaginable, a twin sibling on top of it. She has had conversations as if she was an adult...she is only 11 1/2 years old. For the most part she manages very well....this year she moved from her comfort zone of Chatsworth Elementary School to Franklin Middle School. We all know the transition to middle school is a hard one and can be challenging from friends to course work to grades. She has handled her ups and downs and anxiety all well and pushed through things. 

First quarter report cards came home today and we could not be prouder....she made HONOR ROLL - 3 A's and 5 B's the lowest being an 85%.


Friday, November 7, 2014


Many times over the years we have heard you are an inspiration, you are a hero. I don't feel like one...especially on a night like last night. Today was a rough day for Ian, he spent most of the day in pain. He got the it all  from his regular pain meds to his PRN pain meds, including the oxycodone. By the time the nurse was ready to leave he was doing well. At least until bedtime, however that is usually when most of his discomfort comes into play, unless it was a day like yesterday as we have noticed, the weather plays a major factor in his comfort and pain.

One definition of inspire it to arouse (a thought or feeling) in (someone), inspiration is an inspiring or being inspired mentally or emotionally. A hero is a man of great courage, nobility, etc. or one admired for his exploits.
I don't feel like those things...for me/us we are taking care of our family, raising our children. But we have to do things that most parents don't have to do in caring for their children. I would like to think that if you needed to you would do it as well. Last night was one of those difficult emotional ones. You could tell that Ian was extremely tired which made it more difficult to understand him but he managed to get out what he needed to. It is usually bedtime when Ian decides to share the emotional things...he gets that honestly...right Brian. He said he was sad, sometimes he knows why and other times he does not. He did not know why he was sad but had some questions about Heaven. He asked how someone gets to Heaven. Well I have to say that is one question I had not gone thru in my head to have to answer and I don't remember what I told him. I preceded to tell him that when he is ready to go to Heaven it is okay to go and we will be okay down here. Just like a true pre-teen, he wanted to know if they have TV and popcorn in Heaven, my response...they have anything and everything there. I got a little smile from him then and he told me that I didn't have to worry he would be fine in Heaven. He continued with a few other things about Heaven, all the while I am starting to cry. Ian looks at me and says don't's okay. I asked him if sometimes he felt torn between here and heaven and he said yes (I had never thought of asking him this until I had a conversation with a friend who has lost her son), so I cried a little bit more. He again told me not to cry that we would all be okay. He is so much wiser then his 11 ways he should never have to be. I told him that we loved him with all of our hearts...and he ran down the list of making sure all of us in the house really do...Daddy he asked, yes I said, Becca he asked, yes I said, Joey (that's our dog) he asked, yes I said, and you he asked, yes I said. Finally we got him to stop talking and realized that he was beyond tired and needed to try to go to sleep. Once the nurse got to the house and took over for Ian, I lost me I am not a hero or an inspiration...I am taking care of my ways I never imagined. Watching him grow weaker and incure more pain as days go on but at the same time watching him grow into a wonderful person who is wise beyond his years. Watching him play games with people, play tricks on people, watching him try to scare people...all the things an 11 year old does....we are watching our children us they are the inspiration and the heroes.

Monday, November 3, 2014

"613 & Me", Paint Ball and "New Normal"

Sunday morning we went to our "613 & me" program for the kids B'nei Mitzvahs. They got to do a little bit of service, while meeting local organizations they could do service for. One of the cool parts about this is they get to share in this experience with each other but also with their cousin Devin who will have is Bar Mitzvah 6 months before the twins. Now it will be time to figure out what they kids want to do....the little bit of talking we have done, Becca wants to do something for Make a Wish or Give Kids the World, while Ian wants to do something for Camp Simcha Special.

Ian was given the opportunity to fire a paintball gun from our back deck into the backyard as some brave Chai Lifeline volunteers. And yes they were moving targets. Last night one of the guys from Chai Lifeline came over for Ian to do something you would never think he would be able to do but just knew he would love to do...shoot paint balls...yup. They brought the guns, the paint pellets, some protective gear and 3 of them were the moving targets. We went out onto our back porch while they ran around the back yard and them in the head, in the back, in the butt, on the leg....Tzvi was smart and has gotten to know our family over the years..he did not tell me what was going on until 20 minutes before hand for fear I would say "NO". Wise move Tzvi. 

On a different note...the past few times we have been out of the house with Ian, he has required oxygen. His oxygen levels have not dropped but his breathing has become labored. We think that this maybe his new normal. The HME (in line humidification system we use when out of the house) is just not doing it for him without the oxygen anymore. In addition, at least 10 of the past 14 nights we have had to give Ian his PRN pain medicine (motrin). He has not been able to get comfortable which is requiring a lot of re-positioning. After talking with Erin ( his Gilchrist nurse), and her reporting to his team at their weekly meeting this morning we are going to be working on changing his pain management. We will be increasing his methadone to 2.5ml, while this is not a huge jump we are hoping it will help him. In addition. Dr. Hutton does not want him to use the mortin as the PRN pain medicine any more as it is a non-steroidal which can take a toll on his body. So we will be starting him on oxycodone as his first line of PRN pain meds.

This has hit us a little hard, as we knew it would happen and we know Ian's comfort and quality are what is most important but as with any "new normal" just is....our "normal".