Wednesday, March 26, 2014


A wonderful article by our wonderful Child Life Specialists....Beth....we are grateful she is a part of our village along with the staff at Gilchrist....thank you.

This month we celebrate social workers and child life specialists. With children and in palliative care, there is some overlap in the goal to provide psychosocial support. Our goals are similar, but our methods are different. Children communicate through play, they show their understanding of ideas, fears, joys, and so much more in how they play. As a child life specialist, my hope is to meet them in their space, join them in their internal adventures, be the playmate, the interpreter, and the guide that they often need. This child can’t move, so he creates a fantasy around him in which he has power, can defeat the pirates, be friends with dragons, fly like a superhero, explore death through burying other characters, and act in roles any ten year old would love. With our children, I can be silly, serious, crazy, firm, and fun. I listen to their fears, teach them about their bodies, create play when they physically can’t themselves, and most importantly, empower them to be like Katie Perry’s Champion. I encourage them to Roar, sometimes literally.
A child life specialist is not a social worker. We don’t provide counseling to parents, or coordinate with government agencies. We use our education in child development, communication and play to provide support to children in their own language, gauging what needs may be, from information, to companionship, play, sibling support. We advocate, we communicate, we interpret.
To quote a poem:
“I am deliberate in all my actions and words, because I use the language of children, and it has power. I’m a Child Life Specialist. When kids say the can’t, I tell them they can. I am a teacher, a helping hand, a support, an advocate, an active listener, a therapeutic touch, and a child development specialist. A guide and voice for siblings…All in the same day.”
Our rocket ship driving, pirate defeating captain turns and says ‘I need suctioning.’ Nursing steps in, clears the blockage, and two of us return to beating the imaginary, and symbolic demons of his world.
Families often question what their children know, what should they tell their children. They wish for as many positive memories to create, and hope their child can be happy and fulfilled even at their worst. A child life specialist helps families create those memories through songs, visits, making keepsakes, opening courageous conversations, reframing appropriate information into understandable bites, and helping parents see how strong their kids are. We model play styles, provide special time with siblings, and show parents their own strengths as well.

Monday, March 24, 2014

The Ugly and The Beautiful

Most of my posts are updates on Ian and our family but I have not really gotten down to the ugly part of VRK1 or having a child with a life-threatening illness...there are so many ugly parts about it but I also want to point out there are many beautiful parts of it. 

Over the past years, we have gone through many changes as Ian has gone through many changes. We have gone from a family of four who went out with friends to restaurants, to each other homes for "play dates"...pick up your kids and just easy as 1, 2, 3 in the car and out the door. As disease progression became more apparent (and we had no idea what was going on) we were still able to go out and do; even a wheelchair did not stop us. We went. Oh how the times have changed, it is not as easy as 1, 2, 3 in the car and out the door any more. Some of it is that Ian does not like to go out, he prefers to be home; now we barely go out, when we do it is rarely as a family of four...most of the time friends think we are "too busy" to do anything...not realizing we are home watching TV with Ian, having a family movie night or game night....we could and love to do that with friends as well. You hear of friends celebrating each other B'Nei Mitzvahs, going out on dates with their significant others, going to family events with each are jealous, lonely....we feel guilty, jealous, lonely....we have learned this does not make us bad people, parents, or significant others - it just makes us human. It makes us realize the ugly parts of VRK1...what it has robbed us of, what it will continue to rob us of. But it makes us realize the beautiful part of VRK1...the people who have come into our lives who would not have if it weren't for VRK1, the things we have been able to do because of VRK1, advocating for rare diseases, the closeness it has brought to our family. 

Thinking back to when we first got together, 19 years ago, who would have thought we would be here...thinking back to when we were in college and friends, what we imagined of our lives (regardless of who they were with), married, kids, spending time with our family, friends, celebrating, ...all the things people do...couldn't have imagined our lives now. When I got pregnant, found out we were having twins...we never thought...but wouldn't change it. A lot of times you hear people say...all I want is a healthy baby...well what are you going to do if you don't get a healthy baby...regardless of your baby/child. Yes, it's hard, no it's not hard, yes it's lonely, no it's not lonely, yes we worry about Ian, no we don't worry about Ian, yes we worry about Becca, no we don't worry about Becca, yes we worry about each other, no we don't worry about each other...are we making the right decisions...I know these are things everyone thinks about...but ours is double, triple...still part of me would not change it, part of me would...that only makes me human.

Thank you to everyone who is in our village, who has helped to make the double and triple a little better. There are many people who have come into our village who we never would have met with out the ugly part of help make it the beautiful part of VRK1. 

As I was finishing up this, I received an email from Ian's teacher as they were working on anti-bulling this week. They used Ian as an example and this is what they has to say about him....

Wednesday, March 19, 2014


Whether you had a small gathering or large public event, raised $1 or $1,000, or handed out 1 ribbon or 1,000 ribbons, EVERY effort counts and does make an impact.  That is what World Rare Disease Day is about!

Highlighted Events for 2014 include:
  • Our Blue Denim Genes Ribbons Created Hope All Over the World: This year, more than 120,000 ribbons were distributed all over the United States, Europe, Australia, and Africa.
  • ​Thousands of Global Genes Facebook and Twitter friends showed they "Care About Rare" with our customizable social media profile pictures. It was to inspiring to see so many beautiful rare faces all over the internet sharing why rare disease awareness was so important to them!
  • Rare Events on Capitol Hill: Over 150 rare disease advocates from all over the US congregated in Washington, DC, to share their stories and concerns to their senators and congressmen. Advocates attended the Rare Disease Caucus briefing inside the Capitol as well as joined the Global Genes team for a great night of networking at the Darlington House.
  • Worldwide Reach: We catalyzed many events across the nation and around the global including school-wide programs, business offices, and community events.
Although World Rare Disease Day is over, the need for awareness, research, and support continues. Let's keep the enthusiasm going and continue to encourage the world to CARE ABOUT RARE each and every day!

If you want ideas or support for continuing this important mission, please reach out to our Global Genes team.  We are here to help!

Again, thank you for joining us this year on World Rare Disease Day to build universal awareness and support for the RARE community. We know that the impact of our collective voice would not be as successful without you!

Saturday, March 15, 2014

Weekend of Fun

This weekend started off with us going to Medieval Times, complements Casey Cares Organization...we had a wonderful time. The kids loved seeing the horses and the fighting. The bird flying around the arena was incredible, the training that goes into all the animals.  Of course we were on the BLUE team, no he did not win...but that is okay, we loved watching him. Becca was lucky enough to get a flower from the blue night and she was thrilled. The staff at Medieval Times helped us in any way they could so our experience was wonderful. Seeing the kids faces while everything was going on along with beg able to share the experience with my parents was great. At the end of the evening, the kids wanted to meet the knights and have their pictures taken with them...
Saturday was Girl Scout Shabbat and Becca and I want to Chizuk Amuno to celebrate. We have not been to synagogue in a long time and it was nice to be able to experience it with her. Later that day Brian took Becca and a friend to the being able to give her some special time. Ian and I stayed home and watched a movie on TV. During our time watching the movie, I told Ian that he was being a pain in my tuchas (TOO-khas)...he looked at me and said that sounds like a made up word. Made up word, no Ian it is a Yiddish word which for buttocks. 
Sunday it was time to go to Turkey Hill Experience with Girl Scouts. The morning started off well. As the drive there was good as well. We were starting our experience and Ian started having some breathing issues. His saturation levels did not drop but he was tugging and needing lots of suctioning. We got some stuff out but there was more we were not getting. We decided to put him on some oxygen and head home. Becca stayed with her Girl Scout friends and enjoyed the rest of the experience with them. Once home we got Ian situated on his home ventilator and humidification system and he's doing fine.

 The drive home for me brought out some emotions. Made me realize more and more just how much I HATE VRK1....FU VRK1. Just one more thing we had to miss out on sharing as a family because of more thing we could not spend time with Becca during because of more thing. We try so hard to be "normal" regardless of what that is, but VRK1 can have other plans for us...having to except that stinks (I would like to use other words but won't). We try so hard to not let reality get to us, to not dwell on the reality but on some days, some moments, it just not matter, VRK1 is right there in our face saying ha, ha...well today was one of those days when I let it win for a little I am done letting it win for the rest of the day and I am saying FU VRK1, we are going to enjoy the little bit of weekend we have left.

Remember....TREASURE yesterday, DREAM of tomorrow, LIVE today.

Wednesday, March 12, 2014


They did not know each other but there was a connection. It started with Ian seeing a photo of friends Zaching...Ian turning to Brian and asking him to help him Zaching. To Ian's photo of him Zaching being shared...there was a connection. Hard to explain but from stories that were shared with us you just know.
From us sharing some of Zach's story with Ian and his response of "that sucks" to some of Ian's story being shared with Zach and Zach smiling when he heard they would met one day. There was a connection. To Ian receiving a Zaching shirt and insisting on wearing it for his school photo. There was a day.
Rest in peace Zach 

Tuesday, March 11, 2014


Ian's cultures came back NORMAL. So at this point we just watch him to make sure we don't see anything else going on. I am hoping keeping him in all last week and over the weekend did him lots of good. He did go back to school yesterday and seemed happy to be with his friends. We continue as is on our journey.

Monday, March 10, 2014

The Funny Little Man

This is a bunch of things Ian has done over time...I started this entry for me to be able to remember some of the funny things he does. We all know our kids do things and we want to remember them, well knowing Ian will eventually pass, I wanted to make sure I had them. So here we go.

At the book fair, 2013, he saw some pens he wanted. His nurse told him she would let me know. When she asked what he would do with them he saidwould write/color with them. We were hoping he would forget about them, for those of you who know Ian well, know that was not really going to happen. First thing the next morning, back at school he said he wanted the pens. Then he saw a diary. His nurse asked him what he would do with it, he said write in it with my pens….have to love him. Yes I am sucker and told her to get them for him. All he wants to do is be like everyone else…and we still have the pens and diary, he still tells us to write in it from time to time.

One morning I got a phone call from the nurse about 5 minutes after the bus was to arrive at school, asking me if I had left the house yet...nope I had not. She proceeded to tell me that Ian was if we never feed him. Just to make sure everyone is aware, yes he does eat breakfast before going to school. So he was asked what he wanted, his response, "I don't know",...REALLY...this response should not have surprised me, as 9 out of 10 times this is his response. Usually we begin to list off options to him and his answer..."NO, NO, NO, NOPE". Well lucky for him today the first thing we asked he said "YES". So in my car, off to school before heading to work to make sure the STARVING little man had something else to eat. It's a good thing for him we only live about a mile from school.

Lately one of his favorite sayings is "it is not going to happen." or "Awkward".

One night we were having a family game night, I spilled some water. Ian looked at Brian and said "get over it". Also related to me spilling the water, Becca looks at Brian and says "lick it", well she was holding one of her Barbies and it was bent over while she was saying this....thank goodness they did not get it. We all had some good laughs that night. Brian's response to both of the kids was so glad "my kids love me."

Ian told the Gilchrist nurse that he was going to starve to death while his lunch was being made. Meanwhile his day nurse was making his lunch but he was "starving". There are worse ways to go....

One day, he got a bed bath, he told this nurse that it was the best idea ever...getting a bed bath instead of actually getting in the bath.

Cheese balls, that is what he wanted to a snack. Well we were out of them and I informed Ian that he was the one he actually finished them. That did not seem to matter to him and the looks he gave me...priceless. Thank goodness peapod was due to deliver the next day or we all would have been in trouble. Actually maybe not, just a run to the store would have been made. 

Brian was feeding Ian lunch, he put the plate on Ian's arm for a minute. Ian looks at Brian and says, "Daddy, my arm is getting tired." "From what buddy?" Brian asked. "Holding the plate" says Ian. Really the plate had been on his arm for a few minutes at most.

This winter we were in the van going back to the condo from Epcot. We wanted to make sure that Ian was doing okay, so Brian says, "Ian cluck once if you are still with us." We heard nothing, so I turned the flashlight on my phone on to see if he was still awake...what do I see....Ian with his eyes closed trying real hard not to smile...busted little man. 

Every morning I go over Ian's schedule with him and the nurse. One day after telling him his schedule and who was coming over for the day, he says ok that should work. That night I told Brian what he said. Brian asked him if we needed to get him a personal assistant to keep his busy schedule in order. His response, nope I have mommy. Boy, good think I love him. Most parents are their kids schedule keepers....but come on, really.   

I will be starting another post with funny things the kids do. For the most part Becca is not so funny she just has the preteen attitude. We love her just as much as we love him.

Saturday, March 8, 2014

A Week

This past week has been some ups and small downs. Ian has had lots of congestion on and off. His saturation levels have bed up and down, yes down lower then they should be, around 89, a few times requiring oxygen 2 days/nights. He did not want to get out of bed most days and when asked how he felt, his reply was tired. He was supposed to go to school 3 1/2 days this week but because of the weather and his health he did not go at all. On Friday, the gilchrist doctor came out to the house yo see him, of course at that time he sounded clear. She read the nurses notes from the week to get a feel for what was going on. We took a trache culture to see if he has an infection going on, we are still waiting on those results, hopefully Monday. We did get him out of bed today and we have been spending some family time together. We will take tomorrow and next week as it comes.