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 cry...it'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 years...in 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 it...to me I am not a hero or an inspiration...I am taking care of my child...in 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 grow...to 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 shoot....got 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"....it just is....our "normal".

Friday, October 31, 2014

Happy Halloween

For those who really know Ian...you will love this card as much as he did....he laughed and loved it....thank you Nurse Erin for making him laugh and taking wonderful care of our family and Ian. 

The kids had a great time trick or treating. 

Thursday, October 30, 2014

Siblings of Kids with Chronic Illneses

Earlier this week I had the opportunity to speak to a group of social workers at Johns Hopkins on siblings of kids with chronic illnesses. A chronic Illness is a life-changing event, not just for the sick child but for the entire family. The chronic illness poses a number of challenges to the whole family. In many cases the illness itself becomes the main factor of the family life...even if you try for it not to. It becomes the most popular topic of conversation (we have people call our home, "how's Ian" and that is the topic and the entire conversation...yes Becca picks up on this), the most important thing on the schedule and the major expense. This often leads to schedule changes, routine changes and sometimes just disturbing the overall sense of normalcy for the family (whatever that normalcy is). Helping the healthy child understand this is difficult...factors such as the chronic illness and age of the healthy child come into play.

Siblings face challenges associated with chronic illness of a child within their family. They often "find their lives are constantly interrupted by medical emergencies that trump well kid cares. -Leah Vanderwerp College of Arts and Science We have seen this happen with Becca quite a few times, even though we do our best for it not to happen. When we know of an event on Becca's schedule and things are going on with Ian we have turned to many to get her to that event and to try to keep her life as "normal" as possible. Some of these challenges include the shift in parental attention toward the sick child, the complication of the sibling relationship and rivalry, and potentially even a period of separation from one or both parents and the sick sibling. -Leah Vanderwerp College of Arts and Science Over the years and throughout Ian's numerous hospitalizations, we have developed a way of making sure that every night one of us sleeps at the hospital and the other one sleeps at home with Becca, getting her ready for her next day and to where ever she needs to be. Through advancement in technology the kids skype every night when Ian is in the hospital so they can check in on each other, making sure to give each other kisses good night and telling each other to sleep well.

As a result of these household changes, siblings may face a relationship based more on caregiving than mutual companionship. In the wake of a parent or sibling's absence, other children are often forced to step up and fill the vacated household roles. -Leah Vanderwerp College of Arts and Science The above are things that Brian and I have tried very hard to not do. We try to remember that Becca is still a child and it is not her responsibility to care for Ian. There are times we will ask for help and do remind her that caring for each other is part of being a family, however, due to our unique situation we try to remember that she is the sister, the twin sister for that matter. She does have chores that are age appropriate, and will get punished for not doing them or for having the typical "pre-teen" attitude. 

The healthy child may have feelings of guilt, become annoyed with the ill child because of all the attention they are getting...yes Becca does get annoyed because of this. They have to learn to speak frankly about tough issues at a young age like having a conversation with your 11 year old (both of them) about dying. Talking with Becca about what would happen if we did not trache Ian when we did, having a conversation with her regarding her brothers funeral and letting her know that we have planned it so when the time comes we can take care of each other and not have to worry about that part of it. Having a conversation with Ian, about heaven and letting him know that all of his body parts that no longer work are waiting for him along with other family members who have already passed on are there to meet him. Watching Becca earn her first aide badge with Girl Scouts...they had an ambulance come to work with the girls...watching her look at all the equipment and saying, "there's a suction machine, there's an ambu bag, there's an oxygen tank...etc" Very heartbreaking to hear your then 9 year old know what all of those pieces of equipment are plus how they work. 

Trying to establish some balance between the needs of your ill child and those of your other children is difficult. Some things we have done to do this are to make sure we have one on one time with both kids...we have told Becca if she feels she needs mommy or daddy time then she needs to tell us. We have been open and honest with her as best as we can at her level regarding Ian...after all she lives it in a different way then Brian and I do. She deserves to have her questions listened to and answered.

Some of the things I shared with the social workers are making sure to remind the family that they have other children besides the sick one and those children are going to need them as well. Reminding them that the parents need to take care of themselves as if taking care of parents is as important as taking care of the child because the parents need to be healthy (emotionally, physically, spiritually) in order to help the kids. No we don't practice all of this...it would be nice. Helping the family to get resources in the community not for just when the ill child is in the hospital. For us, we are always in crisis mode and believe it or not, we have crisis mode of when Ian is in the hospital down to a science. It is the crisis mode of him being home that is harder to manage sometimes. The resources are not always there...at least for us given his rare disease. We do have many resources in place and those we have in place are wonderful but there are definite times when more is needed.

I found this in When Jack Fell Down...Jill Came Tumbling After: Siblings in the Web of Illness and Disability

* Assess the family system, determining from healthy children their responses to the complex medical problems of their sisters and brothers. Identify from the assessment sources of strength and stress. Ask parents about the family constellation, support systems, and child care arrangements. Engage parents and children in a discussion about roles, responsibilities, and relationships of all family members. Explore with them family strengths and needs. Determine how children have been informed about the medical situation of their sibling and elicit parental perceptions of how well they have adjusted to it.
* Identify available resources within the family, school, and community.
* Craft the resources into a network that involves but is not limited to a mobilization of social supports. The use of on-line discussion lists and focused chat rooms has become a powerful means of sustenance for parents and children, both of whom gain access though this communication medium to age-mates dealing with similar issues. Parents may need help in understanding the concerns of their healthy children; therefore, nursing strategies should be designed to enhance parental coping as well as sibling support.
* Collaborate with other health professionals to maximize the use of concrete resources. Social workers might provide parents and children with vouchers for public transportation or with access to useful service agencies. Heed the advice of children who have "been in the web."

The following "shoulds," suggested by siblings, have been demonstrated to be effective supports (Itzkowitz, 1991). Siblings should:
1. Be treated as children, not as supplementary adult caretakers.
2. Not assume responsibilities beyond their preparation or maturity.
3. Be encouraged to express their feelings openly.
4. Have their questions answered in an age-appropriate manner.
5. Be involved in discussions and decisions involving family matters, particularly those that personally affect them.
6. Feel that their reactions and opinions are valued.
(Fleitas, 1998).

Lessons have been learned...this was also found in When Jack Fell Down...Jill Came Tumbling After: Siblings in the Web of Illness and Disability. Some of these things Becca has verbalized in different ways and I hope as time goes on she will continue to verbalize them and see more.

One teen pondered her life as the sister of a child with a progressively fatal neurologic disease, and conveyed a number of positive themes in her message. "Living and loving...has taught me so many things. I've learned how to be patient, understanding, and caring. How to love fully. I've learned to take time for the little things in life, like looking at the trees and watching the leaves blow." She continued, "To my amazement, I love the life I have because of him...I would never trade it in for anything else! I learned that when in life we're faced with challenges, we should deal with them the best way we can, we should take time out for ourselves, and we should never give up!"

The path to maturity is slippery, yet this teen travels it with certainty. She attributes her values to the lessons she's learned from her brother. "...the other day, perfect example, this girl in my class is complaining that nothing ever works out right for her. She whines because she has bad hair days one after another. And I'm like, 'Hello, get a life,' my brother is so brave with his trache and his wheelchair; he teaches me that what's important is kindness and courage and laughter. Never thought I'd get to a point where I'd say laughter, but I think that's how we all survive in my family."

I did not plan my talk, I just got up there and shared our journey and started speaking....I hope they gained as much as I did.

Wednesday, October 29, 2014

Making Memories

Since Ian has not been going to school anymore and a teacher is coming to the house we have been able to go out a little bit more. It seems he has a little bit more energy on the weekends. so we try to venture out. A few weekends ago, Toys R Us had a free Lego building Batman lite. It really was little but we did not know what to expect, it didn't matter because the kids had a great time. And they each got to pick out something new from there...so you know they really had a good time. 

That same weekend we went glassblowing. It was amazing and something we got to do together.  Brian and Ian each made a paperweight. Becca made a flower.  I made a ring holder. And together we made a vase. Learning something new and watching how everything is done along with watching the professionals make other things was amazing. These are treasures we will always have.