Wednesday, October 28, 2015

Heaven over Hospital

It's all over Facebook, the article on CNN Heaven over Hospital - Dying girl, age 5, makes a choice
Reading this article hit home...the girl is dying of an incurable disease. She has a rare neurodegenerative illness. She was in and out of the hospital 3 times in a 10 month period getting unimaginable procedures (a suction catheter inserted into her nose, past her throat and into her lungs to clear out the secretions). Initially, she was only affected in her arms and legs, then came the respiratory. After watching their child go through unimaginable procedures, unable to fight back as they were being done because she was too weak to move and only seeing the tears stream down her cheeks, they decided to talk to her about Heaven. At what age do you talk to your dying child about Heaven...where do they want to go Heaven or Hospital (where they know those procedures will continue to happen). You know there is no way they will get better...there is no light at the end of the tunnel when you will have your healthy child back, the light at the end of the tunnel has your child out of pain, running, jumping, cutting, speaking, eating....but they are in Heaven.

Children who go through unimaginable things are wise beyond their years. They get things, things which adults don't sometimes get. I believe they know they are dying, they know there is no getting better...they know what their bodies can and can't take. They know they are getting tired and weaker. You can see it in their eyes, hear it in their voices and the things they say. You see it in their smiles. They may not be able to express it in words but they know and you know.

It has been over a year since Ian's last hospital stay. We have managed to keep him healthy, to keep the nasty out of our home...but we know it will come in's just a matter of time. Since his last hospital stay, we have had a similar talk with Ian about Heaven over Hospital...he gets so much more then you think. He knows what is happening with his body, he knows he is dying, knows he won't come off the vent, knows what he knows. He does not want to go back to the hospital, he doesn't want to be home, he wants to be at the Gilchrist Hotel. He knows heaven over hospital means he will be loved by many others he has not met yet, mommy, daddy and Becca will get there later after him. He knows he will be out of pain, running, jumping, walking, cutting, speaking, eating, swimming all the things he watches others do, all the things he used to do. 

Brian and I have decided to let Ian make this decision, to agree with his wishes...we completely and whole heartly agree with the parents of the little girl. 

Tuesday, October 27, 2015

Emotions Are Up and Down for All of Us

Last night was an emotional night for Ian and Becca. Ian had some Chai Lifeline visitors and was having a great time looking at a photo book they brought over covering his 3 years at Camp Simcha Special. All of the sudden, he got this sad look on his face. He proceeded to tell us that he was not happy. As anyone would do, we asked why...his response was that he was scared of heaven. (This was not the 1st time he has expressed his fear, just the 1st time he has done it with others besides mommy and daddy). How do you answer that...when you know that you are scared as well....scared of what your world will be like once he's in heaven. Well you forget about your fears! The visitors sat there for a little bit and listened to me tell Ian that it was okay to be scared....that when the time was right he would not be scared of Heaven. Over the years, Brian and I have had a few conversations with both kids about this...I have had a few conversations with Tzvi Haber, one of the visitors who was he knew where our family was going when this came up. I proceeded to tell Ian Heaven will be a big party. This is where Tzvi chimed in....he told Ian that when he gets to Heaven there will be a huge tunnel for him to run through on his own with his legs...because they will be working up in Heaven, just like at Camp Simcha. There will be lots of people waiting to welcome him at the end of the tunnel who will all be happy because being sad doesn't happen there. Ian will meet past campers and counselors from camp and one of them will have the microphone to introduce Ian, once that happens he will be a counselor not a camper anymore. Ian will meet Tzvi's Grandma Zina and tell her that Tzvi said many different things (some of which he shared last night but I will not post here). Ian began to smile as Tzvi was telling him all about Heaven and what he believes will happen there. Tzvi asked Ian if he would be waiting at the tunnel for Tzvi when he was ready to go to Heaven...Ian loved this. After about 20 minutes of discussing Heaven with Ian, Tzvi and Yitzi....Ian was no longer sad, at least for the moment. We know he will bring this up again from time to time as his journey continues and he progresses towards Heaven.

As for Becca, as she always does she called me when she was home from school yesterday. I asked her how her day was and she said, "ugh". Why just "ugh", I asked. She proceeded to tell me that her mind was just not there, while she was there, her mind was not...oh boy do I understand that. "Where was your mind?" I asked. She said a little bit here and a little bit there and on life...well when Becca says on life it is always about what is going on at home and all she has to endure due to the hand we have been dealt. She has seen things a 12 year old should not have to see, she has dealt with things a 12 year old should not have to deal with...and I know that much more is to come. I knew she could hear some of the conversations with Ian, so I went to check on her. She told me that people don't get what she is going through...I told her that is correct they don't. She said some people don't believe that she is a twin and when she shows them a photo, they just look at him like he is a normal boy and it is not big deal. I tried to explain to her that they can't understand but it does not matter what other believe or think. She asked what was wrong with Ian...I told her that he was talking about being afraid of Heaven. That is when she broke down. Becca said that she does not want to come home to an empty house (right now she comes home to Ian and a nurse everyday). I told her I could not promise that, (initially, I know when the times comes, Brian and I will do what we can to ensure that does not happen). All I could do was hold her while she cried on my shoulder knowing that one day she will lose her twin brother...I felt helpless. I told her that over the years we have all been grieving and this was just one more step for her. Becca told me she felt G-d was preparing her a little bit more because she felt that it was going to be heart dropped. I asked her soon meant to her and she said sometime this school year....ugh....what if my daughter is right.... we talked about how we will work on getting used to a new normal after Ian passes first one we may not like but one we would eventually get used to. She cried on my shoulder a little bit more and then told me to go check on Ian.

As quick as these conversations, start in our home, they are over. Not forgotten, but we move on....this morning Ian was good. Becca had a rough time getting off to we let her go in late and with a little bit of extra time she felt like she could handle the day. 

Please remember to treasure, dream and live. As another friend who is going through a major life crisis has been saying... Please, as always, hug your loved ones tight and kiss them often. 

Thursday, October 22, 2015

Happy 12 1/2 Birthday

Today Becca and Ian turn 12 1/2 years old. When you live with a life threatening disease and you don't know what tomorrow will celebrate it all....even the 1/2 birthdays. Mommy and Daddy love you both to the moon and back. We can't wait to see what is in store for you both.

Monday, October 19, 2015

Pain Crisis Update

Ian seems to be doing better with his pain. We have increased a few of his medicines, oxycodone and gabapentin, rumor has it from his hospice nurse,we have one more increase of the gabapentin this week. Along with ice packs, massages and a fan blowing directly on his feet we have been managing. We have even had some days where he has not said "my feet are on fire" until late into the day and have been able to manage without giving him his PRN oxycodone. All a good thing.

This weekend, was his cousin Devin's Bar Mitzvah, and Ian went and enjoyed him self. He was out and about from 9:30 Saturday morning until close to 4:00 in the afternoon. He was tuckered out by the time we got home but no pain was to be hand.

Thursday, October 8, 2015


Pain comes in all shapes and sizes, all ways and places. This week pain seems to be our biggest challenge. There have been many days where getting ahead of the pain is all we are trying to do.  All our tricks, (ice packs, capsasin cream, fan, feet being uncovered) don't seem to be working. There are many things about managing Ian's care which are difficult and emotional for us...for me one of the hardest is seeing him in so much pain that he is screaming and yelling "my feet are on fire". Today, when asked to rate his pain on a scale of 1 to 10 with 1 being the best and 10 being the worst, he was at a 10...this has not happened before. We have been working closely with his hospice team and all of his pain medicines have been increased over the last few days. We are hoping that the increases will help Ian's pain come down from a 10 and for us to be able to manage it. 

Make some memories this weekend, I know we will. Treasure, dream, live. 

Tuesday, October 6, 2015

More From The Grief Club

Over the last few weeks I have been doing more reading on grief...the reading helps me to realize more and more that I have been grieving for quite a while and it comes and goes for me. The Grief Club: The Secret to Getting Through All Kinds of Change by Melody Beattie has helped me to realize that grief comes in all shapes and sizes. Here are some quotes from the book which I have found interesting. I hope you do as well...

If there's no purpose to it, loss feels impossible to endure. But if we see some meaning, bring the struggle on.

...understand that sometimes life twists, and it doesn't matter what you do.  Things don't work out the way you want, and you can't do much about it. The only way out is through. 
...every stinking dirty little thing that happens to us happens for a reason. I take each day as it comes. Each experience has something to teach us. It's our job to figure out what that lesson is.

Destiny is sneaky. It creeps up on us when we're not looking. Sometimes were staring at our problems so hard we forget they're part of our destiny too. We might forget our dreams, but our dreams don't forget us. Dreams are life's way of showing us what our destiny is. 

Meaning is important. Certain things such as religious objects or holidays have universal meaning. En masse, we agree that something means a particular thing. But the meaning we attach to life events is personal. It doesn't matter if something means anything to anyone else. What matters is what an event or experience means to us. We can go through horrendous struggles if there's meaning to what we endure. 

We each have a magic wand that can change us and impact the world. It's called our power. People say we own our power, but power isn't something we own.  It's something we step into, grow into, breathe into.  Power is a force in the universe we align with. We don't pick it up like a club.  We can write and rewrite stories that create self-esteem and the knowledge that we are loved. Even in worse-case scenarios where we weren't loved or we lost our self-esteem, we can write a new story or another ending. 

Many grieving people go through a cycle when they have nothing--no energy, attention, or love--to give anyone in their lives. That doesn't mean they don't love those people. It means they're depleted. There's nothing left to give. Intellectually, they know they should do different and better. But they're only human, and their humanity shows. Sometimes we need to accept and forgive others and ourselves because our best wasn't very good. Sometimes we go crazy--insane--with grief. If we wait for life to entice us into living, coax us into believing I it again, we may wait a long time. Making a commitment to life starts the ball rolling. We'll still have more grief to go through, more emotions to feel. But when we commit to life, we stop the downward spiral. Pieces start falling into place. 

Until next time...remember to treasure, dream and live.

Friday, October 2, 2015

Wheelchair Clinic and Follow-up on Shoulder

This morning started off early at Mount Washington Pediatric Hospital at the Wheelchair Clinic. We got to see a few faces we haven't seen in a long time, Ms. Sharon, Ms. Kathy, Ms. Trish and Mr. Craig. Over the years, we have worked with all of them for many different reasons. Today it was looking at modifications on Ian's wheelchair.  He sits ok in his current chair but since his surgery modifications definitely need to be made. We are hoping for a new set of wheels, back piece, and headrest. The biggests obstacle will be insurance, here is to hoping that they give authorization quickly and with out questions.

This afternoon, we went to see orthopedic for his shoulder. X-rays were taken ... It is showing signs of healing. He can stay in the sling for comfort and we don't have to go back. 

Woo hoo, two good appointments. Now it's time to stay in and out of the wet.

Happy weekend.