Monday, February 29, 2016
It has been a long, cold winter and I've clung to the promise of Spring like a savior.
When Spring comes, I will feel better in my bones.
When Spring comes, I will feel my heart lighten.
When Spring comes, I will be happy and more patient and care for myself...
When Spring comes.
This place is familiar to me. I've been here many, many times. Times when my Spring was food. Or no food. It was God. And self help books. My spring was "love." It was a downed bottle of pills. Or hospitalization after hospitalization. Therapist after therapist. My Spring was alcohol. Care taking... of everyone but me.
I've suffered a thousand Springs.
During these long, recent Winter days, the weight of my burdens was heavy. Diapers and homework and marriage and real estate. Housework and arthritic pain and grief and hope and writing and not. Endless patience and excessive worry and packing lunches and chasing a toddler and getting out of my pajamas... or not.
Both big and small things which, on top of each other, became seemingly insurmountable and threatened to crush my spirit. Spring was too far away to even envision. So I stayed inside. It was clear - this winter would last forever.
Here I was again making the same foolish mistake of my youth. Who am I to expect the next anything to make things different? What if I stayed inside waiting for my spring to come to me... and it never came? Then what?
The days of "quick fixes" and self punishment and longing are years behind me. The problems of my youth seem small compared to the grief for the children I once held under my heart. I rise each day embracing the constant battle between joy and pain, anger and forgiveness, singing birds and buzzing alarms.
No matter where we are in life - it's always the same. We must experience Winter before we can experience a Spring. We shed parts of ourselves that we don't like... we leave behind behaviors that don't work for us (or those around us) anymore... and we start again. Our blooming can look like a first step or the next step or standing still with our face to the sun.
I am coming out of my winter - a winter of great discontent - feeling grateful. I was in that uncomfortable spot between no longer and not yet... between promise and fulfillment... and I forgot one thing. I was put in that spot for a reason. There was a lesson to be learned. There were choices to be made that were mine. Only mine.
Each day, I rise and thank God that the children I mourn are safe - and happy - and everywhere I am, every day. I thank Him that I knew they were never mine to begin with and I learned as much as I could from them while they were here. I thank Him for all I'm learning from Brian and Hope... and from a husband who teaches me every day that it's okay to be me. And I thank Him because I know - deep in my soul - that this life is just one big journey in a self-led classroom on our way back home.
Sometimes I get lost. But then I find myself again.
The sun shines brighter through our bedroom window these mornings. The birds sing "Spring is coming!"... and I believe them.
Spring will come - for all of us - if we just ask.
Monday, February 22, 2016
Before Gavin died... as in, just DAYS before, he was on fire. Something clicked - we could see it - and he suddenly started to walk more, interact more purposefully and make attempts to communicate. We had such high hopes for the future - for ours and for his!! I know that much of Gavin's success is owed to the therapists and teachers along the way that worked with him - and taught us how to help him. We have always had nothing but respect and love for these people - many of which are still a big part of our lives!! Before he died, Gavin was in a brand new special needs preschool classroom. They used space in our local Kindergarten Center and Gavin's little class was welcomed by the whole school.
I remember his first day meeting his new teacher, Miss Megan, with a smile on his face.
And I remember one of his last days there. The kids from the Kindergarten Center came out of their classrooms and lined the hall to cheer for Gavin as he walked down the hall. It was such a huge day. Ed took time off from work and we kept Brian out of school and we all celebrated this incredible accomplishment. I could cry just thinking about it.
Gavin was so, so proud of himself as he cut through that ribbon and was hugged and kissed by all of us.
Last week, there was another ribbon cutting at the Kindergarten Center - and we were invited to attend. They were officially introducing two brand new inclusive preschools to our county, Chester County, PA! One will be Gavin's old classroom, which I am so proud and happy about, and the other will be housed in our local public high school. Hope and I were dressed in blue to represent Gavin on this special day.
Representatives from the Chester County Intermediate Unit (where Gavin received his services when he was alive), the school district, the principal of the Kindergarten Center and Warren Kampf, one of our state representatives, were all on hand for the ribbon cutting ceremony.
The classrooms will have typically developing and special needs children side by side - learning together and learning from each other.
It was a very special morning, for a variety of reasons, and I was thrilled to have my Mom there with Hope and me. You can see us in the front row! I was so proud of Hope for sitting and listening through several speeches and acknowledgements. She was so good!!
As I looked over at the faces of the current students that are in "Gavin's classroom," I got teary. They were all wearing matching tie-dyed tee shirts, which I am sure was a big, messy art project in school one day. I felt pride as I scanned their faces, just as I would have if I were scanning the group looking for Gavin's smile.
I certainly was NOT expecting this day to be even slightly about me, so I was extremely surprised when they called me to come up to the podium. Or should I say... called all of US! They gave me a lovely plaque to thank us for the money raised (so far) through Gavin's Trust Project. And they encouraged everyone there to visit the classroom later and look around at all the equipment, toys, communication devices and more that were purchased with that money.
A student from the class came up to present me (and Hope!) with flowers, which touched me even more.
At the end of the program, the students took the stage to perform a couple songs they had been working on.
Hope loved the show!! She was rocking and clapping and totally mesmerized. And I loved it, too, as I knew just how much practice and effort and therapy and pride were all wrapped up in every single note.
When the show as over, we all headed to the classroom for a visit. It was nice to see Miss Joanna, the current teacher, who started in the classroom after Gavin died.
I am sure I don't need to tell you how it felt to watch Hope play and explore "Gavin's classroom." (I can't stop referring to it as Gavin's classroom! He still feels there when I visit!) Hope walked in and made herself at home. She even took the hand of Deb Hiller (who is responsible for handling all the donations that come in to Gavin's Trust Project - among many other things!) and sat her down to play!! The mixing of my two worlds - less than two years after Gavin's death - was a hundred emotions combined.
We even got to do an art project together - creating a rainbow.
Hope felt like she had won the lottery when I let her control the glue stick AND use markers!
Gavin's presence is still in the room - not just emotionally, but really present. His photo and butterflies I saved from his funeral service are hung in the classroom.
And I've been told that the card with the blue butterfly - describing Gavin's Trust Project - is hanging in classrooms all over the county. It's also handed out to parents who receive equipment or toys purchased with money from the Trust Project.
If you click on the photo, it may be easier to read...
It was such a special morning at a school and in a classroom that means so much to us. When you walk into the Kindergarten Center, this is the first thing you see - framed handprints in all different colors. At the bottom it reads:
Every child instinctively knows what many adults have long since forgotten:
Our differences are not something to be tolerated, they are something to be celebrated.
As a special needs Mom, I know two things. I know that our son, Brian, is a compassionate and thoughtful child because he lived and learned side by side with his older brother. This is one of the reasons that I am thrilled about these inclusive preschools. It benefits everyone! I also know how hard - and EXPENSIVE - it can be to support these children at home and at school. Simple therapy aids to use in the classroom are a fortune!! This was exactly why I started "Gavin's Trust Project" after Gavin died and it's one of the things I am most proud of. Since April of 2013, the Trust Project has raised close to $30,000 - 100% of which has gone to the Chester County Intermediate Unit to support the special needs children in Chester County that they care for. It has opened and furnished brand new classrooms... purchased equipment for children whose parents may not have otherwise been able to purchase or acquire them... bought adapted toys and even communication devices and technology.
Gavin's Trust Project accepts donations 365 days a year and any little amount helps. Gavin's Granny sent a check to the Trust Project in the amount she would have spent on Christmas presents for her Grandson (who was one of 20 grandchildren!). The money was recently used to purchase a much needed weighted blanket for a student who needed help getting settled. This may seem like such a small thing to some - but trust me, it was huge. You can read more about Gavin's Trust Project HERE or you can make out a check to CCIU and put "Gavin's Trust Project" in the memo. Mail it to:
Chester County Intermediate Unit
c/o Deb Hiller
455 Boot Road
Downingtown, PA, 19335
Congratulations to everyone involved in helping these inclusive preschools go from dream to reality.
And thank you, from the bottom of our hearts, for continuing to include Gavin and our family as you set up his friends for a brighter future.
Wednesday, February 17, 2016
Have you ever been in a situation that made you feel so desperate that you were willing to try anything to make it better?
I have. It was called being Gavin's Mom.
I was constantly on a quest to make his life better in every way. Simple things like finding ways to make sure he felt included and could participate in family activities. Or figuring out ways to physically improve his life with equipment or clothing or shoes or aids or new therapies. I was always on a quest to improve his health and nutrition - and to keep his playroom neat and constantly interesting so he could move around and enjoy himself. But honestly, my greatest mission in life was to figure out his diagnosis - and that was the source of my desperation and most of my sleepless nights.
Back in February of 2013 - just a couple months before we would lose Gavin so suddenly - Chasing Rainbows was nominated for an award by Parent's Magazine. I never in a million years thought I would win - and didn't care. It was a huge honor to be noticed and nominated - but to be honest, it was MOST exciting to suddenly have a platform. I used it, shamelessly, to put Gavin into the universe - hoping that someone out there would recognize something in him that would lead to a diagnosis.
It was a fascinating experience. I got a lot of suggestions... a lot of "Gavin looks like my child who has"... ideas for tests to ask for... and a reader who suggested that I contact a "Medical Medium" by the name of Anthony Williams. I took every suggestion and every thought seriously. I sent an email to Gavin's geneticist that same day and asked her what she thought of a list of new syndromes and disorders. And I immediately contacted Anthony Williams and got an appointment almost overnight. The call at that time was $350 for an hour. (It is now $500 for a HALF hour) I remember sitting on the phone waiting to talk to Anthony and I was so, so excited. I was sure I was about to get the answers about Gavin that I had been searching for since the day he was born.
I explained to him my desperation to get answers about Gavin's mysterious, undiagnosed genetic syndrome. He spent the first ten minutes or so talking about supplements. The history, which brands he prefers, which supplements help with what. Then he told me that mercury was the cause of Gavin's issues - that I passed actual mercury on to him and a mercury sensitivity in utero, causing his physical, neurological and developmental issues and explaining his features. Basically, that he suffered mercury poisoning in my womb. He said that was the cause of all of my miscarriages as well (nine at that time). He also said I had the Epstein-Barr Virus in my system. Then... it was back to supplements again. He was a very nice person so I tried to remain patient. I thought he was just getting off track and would get back to helping me with our medical mystery.
I watched the clock tick and tock - and watched our money continue to fly out the window - as he spent 95% of our call discussing supplements and telling me to write down which brands of supplements to give Gavin and which I should take. I wondered, in frustration, if he got a kickback from supplement companies! You can read that original post here.
I hung up feeling very upset... very foolish... and extremely dissatisfied. I had been told he could "diagnose" and I didn't get that. But - if you know what it feels like to be desperate, then you know what I did next. I convinced myself that maybe that was exactly what I needed to hear. Maybe the supplements WERE the answer! Maybe Gavin's issues WERE "my fault" when I passed on mercury to him. So I went out and bought all the expensive supplements and made small dietary changes. I did them all for Gavin and for me.
Just forty eight days after that call, Gavin died of a random febrile seizure that stopped his heart and led to brain death. He was gone - only 5 1/2 years old.
For months, I stressed and questioned doctor after doctor about the supplements wondering if we hurt him in any way or they led to his death. It was an excruciating time. (Thankfully, every doctor assured us it was not our fault and the supplements were not at all the cause.)
After Gavin died, Anthony William's assistant called and said he requested that we call him. I suppose he either read that Gavin died on my blog or saw it on social media. I did NOT appreciate being summoned by him when it was my son that died, after all. I never called him - and he never called again.
Since that time, I have received close to 500 emails from people who googled Anthony Williams, found my post and have questions. Most of them are writing to ask my opinion before they put themselves on a waiting list for a $500 call. Many have written to tell me about their call - and how they won his "lottery" and were picked for an appointment. I answer every email personally - even though 75% of them end with "I hope Gavin is doing well!" I suppose it has been my new mission to keep people from making the same, foolish mistake that I did.
The following comments are all "alleged" experiences by those who have had appointments with the medical medium, have bought his new book or have listened to his radio show. I want to emphasize the word "ALLEGED" so no one comes after me. ;-)
Over the last month or so I could tell that something had shifted because I started to receive at least ten emails each day. It turns out that Anthony Williams released a book. I was told by many people that they were offered incentives to give his book five star ratings on Amazon - prizes, autographs, etc. I personally feel like that is immoral... especially toward desperate individuals who are seeking answers and then are misled by all the praise! At one point he was offering a $3,000 prize for the most inspiring Amazon review. I'm sure the "winner" was someone from his publishing team. You'll be hard pressed to find anything negative about him anywhere on the internet (which is one of the reasons why I'm writing this post). I am quite sure he has a team of people keeping his image squeaky clean. You'll notice his Facebook page doesn't allow visitor posts - and he personally answers every single comment under his own posts. I'm not sure if he's a "medium" or a "nutritionist" - nearly every post is about what supplement to take and not focused on medical issues. People who are gravely ill contact him which makes me very sad.
ALLEGEDLY, the "lottery pool" is a ploy to make every person feel "hand picked" and oh, so lucky. Everyone wins the "lottery" - and the prize is losing $500!
There seems to be a theme from people who have contacted him. He has (allegedly!) told them all that they (or their children) have the Epstein-Barr virus, shingles or mercury in their bodies - or have had mono as a kid. All of these things can explain anyone's symptoms. Then he puts everyone on a benign supplement regimen that is pretty standard and well known to anyone in the health care world. There is nothing "spirit-led" about it.
He claims that he is the only person in the world with this gift - as a medical intuitive. My personal opinion, but if Anthony Williams was the real deal, don't you think the internet would be blowing up with "I'm healed!" or even "I'm so much better because of his advice" stories? You don't see the internet blowing up because everyone is either ashamed that they fell for him, no longer with us or have just moved on with their life (less a big chunk of money). Allegedly, of course.
I feel glad when the people who don't have $500 to lose write to me and I can keep them from handing over their rent money... grocery money... and their hopes to him.
I feel sad when people write to me who are so, so sick or were like me and have a child they are desperate to help. I know their pain and their struggle and hate bursting their bubble with my story about my experience - and the many, many emails I've received from people who had the same experiences.
If you're thinking, "She's just bitter because her son died and wants someone to take it out on" - well, you're wrong. I tried it all for Gavin - including contacting a "medical medium." Or should I say, "THE" medical medium... since he claims he's the only person alive who has this special gift. Too bad The Medical Medium couldn't have given me a head's up that Gavin would have an issue that could cause his death. Perhaps there could have been a way we could have intervened.
Of course we couldn't have intervened - and of course he wouldn't have known that Gavin would die - because he's a fraud.
I know what it feels like to be desperate. I do. And I know what it feels like to be sick and want to be well. I feel that every day. But Anthony Williams is not your answer.
I've answered hundreds and hundreds of emails since 2013, but hopefully this post will put an end to them. And hopefully Gavin and I will continue to help people by sharing our experience.
If you found this blog post by googling the Medical Medium, please consider this YOUR sign from above... save your money and your time and your pride. Do not contact him.
Some lessons are learned in hindsight, unfortunately.
(Boy, Gavin, our journey together continues to be a wild, interesting, twisty-turny, lesson-filled, sometimes bizarre (allegedly)... and always a loving one. I miss you so much.)
Tuesday, February 2, 2016
Imagine finding out that your child - or a child that you love dearly - will die without an organ transplant. Terrible, terrible news to receive.
Then imagine, if you even can, that the doctor tells you to go home. That there's no hope. That you will have to watch your child die a slow death. They will do what they can and, in the end offer palliative care... but with only 25 people on the registry, there's really... no hope.
This is a reality for many, many families in Japan where there are so few people registered as organ donors.
But there is another scenario...
Imagine, again, finding out that your child - or a child that you love dearly - will die without an organ transplant. Devastating news.
Then imagine the child's doctor telling you - "Wait, there's hope!!" He tells you that you can begin to fundraise for a trip to America. It will require huge personal sacrifice, the help of an entire community. He explains how it would work. He (or she) would likely make a trip to the United States to make doctors there aware of your child and the need for an organ at some point. Lay the foundation, if you will. If your family does not have health insurance in the United States (most do not), then you would need to raise $3.5 million dollars for travel and medical expenses. You may need to stay for many months - you will likely have to charter a plane with life saving medical equipment like ventilators - and it's very possible that you may need to come back to Japan just to return to the United States if an organ doesn't become available. He will explain to you that UNOS (United Network for Organ Sharing) has regulations where only 10% of organs on the transplant list can go to patients that are outside of the United States. Once the quota is filled, you would have to wait until the next year. So you are faced with finding a way to fundraise $3.5 million dollars... care for a child with serious medical issues... in some cases, parent other children from afar while you travel to a distant land to save one... and try - in a country devoid of hope when it comes to organ transplants - to hold on.
Both scenarios are dreadful when you come right down to it. But, unfortunately, this is happening right now in the beautiful country of Japan.
This past Saturday afternoon I had the distinct honor of participating in a (yet to be named) documentary that is in the works about organ donation. A film crew from Japan - yes, as in all the way from Japan - came to our home to talk to me about our journey with organ donation and to, quite frankly, stun me with statistics that made me realize that this is a veritable crisis in their country.
There were 15 transplants total in the last six years for kids under the age of 18. Can you imagine that? But wait...it gets worse. Really, really worse.
There were 4 donations for children under six years old in the last six years. Only four. Imagine if you were the parent of a child and you weren't able to get a transplant in your country... and you weren't connected enough to raise millions of dollars to bring him to a country that might save him. Just imagine.
Clearly, something needs to change. And hopefully this documentary will be a great start. It is set to be released in Japan in May. I'm hoping to get my hands on it (with subtitles!) so I can share it with all of you.
This documentary was born from the story of a little girl named Saho who is from Hiroshima. In 2012, she needed a heart transplant and her family and their community were able to raise enough money for her to receive her transplant in Michigan. She is doing well now! The story was covered in Japan by a woman named Eri Mikami who works for the Japanese station TSS. Saho's story was Eri's inspiration for this documentary and it was she who came to our home to interview me. She was accompanied by a lovely translator, Nina, who works for Fuji TV in New York and her cameraman, Taichi. Also, a representative from the Gift of Life Donor Program in Philadelphia - Allison - came as well. (Thank you to her for this photo!)
Eri and Taichi started work on this documentary three years ago and, since then, have followed the story of another Japanese child. His name is Hinata and he is five years old. His family was also able to raise enough money and Hinata received a heart from a boy who lived in Alaska. Before they came to meet me in my home, they were in Anchorage to deliver a video message to the donor family from Hinata's family. I am sure that was an extremely emotional moment.
I was eager to sit down with Eri to understand more about why there are so few registered donors in Japan. I did my own research on the internet ahead of time, but it's better to hear first hand from someone who really knows. The things she told me were illuminating... and jaw dropping.
In Japan, they have a hard time understanding "brain death." In order to donate organs, one must be declared brain dead. But when you're sitting by a bedside and still feel the warm skin and hear the beating heart and see the rise and fall of the chest of the person you love - it's hard to understand that they're truly gone. Many believe their loved one can come back from brain death and want them kept alive for as long as it takes. If the person is to die, they want it to be because the heart stops beating on its own. This would mean that all the organs would shut down and be rendered unusable for donation purposes.
Another really huge pitfall that was mind boggling to me is how they determine the "cause of death" if one chooses donation. If someone who was brain dead was left alone and their heart stopped beating on its own (on average that takes about ten days, they found) - the cause of death would be considered "brain death." But if a person chooses donation for a loved one who was brain dead, the cause of death would be considered "donation."
I was told that people who register as donors or choose donation for their loved ones - especially a child - rarely talk about it. It's not like it is in the United States where we seem to take great pride in doing kind and altruistic deeds and are happy to share about it with others. In Japan, it's almost taboo. And after hearing the cause of death situation - I can understand why!! It almost seems like you are handing over your loved one to be "killed" by a doctor for their organs when they list the cause of death as "donation!!" I can completely understand why they would view it the way they do. This has to change.
Tonight, as I was tucking Brian in, we were talking about life and school and the future and what he wants to be when he grows up (he doesn't know). He asked me what I wanted to be when I grew up (ha!) and I told him that all I ever really wanted to be - my whole life - was a Mommy. Everything else I did was fun and fine but it was all just to kill time until I could be a Mom. That nothing makes me happier than doing things with and for him and his sister.
Then he asked me, "Do you feel sad that you can't be Gavin and Darcy's Mom anymore?" Oomph. I told him this: Every time I write on my website something that might help someone... or every time I raise money for a cause that was important to Gavin and our family... or every time I talk about organ donation... and especially every time we include Gavin and Darcy in our conversations and plans... I am actively Mothering them. I'll always be their Mommy - but I sometimes need to feel like I'm BEING their Mommy. So the other day, when that film crew was here to interview me? That made me feel like I was actively being Gavin's Mommy - and the Mommy to all of these sick children in Japan who need a voice right now.
His response? "Woah. That's really good."
So when I sat on my couch and looked into Eri's kind face and she asked me to talk about Gavin and our journey to organ donation, I felt happy. I knew that Gavin was in the room with us. The words came out of me before I could think too much. It's a heartbreaking - soul crushing - story, Gavin's. But it needs to be told - over and over again. Each time I tell it, I know I'm sharing something new. Something important. Each time I tell it, I learn something new myself.
I told Eri how choosing to donate Gavin's organs was really the only choice. The alternative - to let him slowly die and allow his organs to fail and watch his body change dramatically until he was no longer "Gavin" - seemed cruel. Cruel to him... and cruel to us. It also felt selfish. Gavin, in our eyes, was clearly sent to us to teach and to help and to inspire - not just his family, but all of those who came in contact with him in any way. To stop him from continuing on his journey to help people would have felt dishonorable. I explained the detailed and precise way that "brain death" is determined - and how it left no question in our minds that Gavin was truly gone. Choosing organ donation was our way of honoring his life - and honoring him.
I asked Eri and Nina how the Japanese view cremation. I was so fascinated to learn that many Japanese people have a cremation ritual that is quite profound. They cremate only the flesh and keep the bones. (I don't know how that's done - but you can read more about this type of funeral here) Then, the relatives and loved ones sift through the ashes and pick out the bones with chopsticks. Nina explained that this is a way to honor their body - they hold up each bone as if to say "Ah, look at this healthy bone!" before placing it in the urn.
Instantly, I thought of the irony. I wonder if they could view organ donation the same way! If they could imagine their loved one being wheeled into surgery a hero. If they could imagine the surgeon picking out each organ and praising it as healthy and strong and still having a divine purpose in life before "placing it" in another person where it could likely save them. If only they could see how much honor there is in saving other people's lives. I went on to explain to Eri how I told Brian about organ donation. How I told him that our bodies are like suitcases. We fill our suitcases with our favorite and most valuable things to get them all safely to our destination. But when we get there, we don't have a need for our suitcase anymore! Well, our body... including our organs... are all part of our "suitcase." Inside that suitcase is our immortal soul - the thing that makes us who we are. When we die, we have no need for our body anymore. But our soul never dies! That is why he understands that Heaven is all around us. Gavin and Darcy and Pop and everyone he loves that is gone - their souls are all around us.
Eri seemed a bit nervous to ask me one question. She wondered how I felt about Japanese families fundraising to come over to get their child a transplant. She explained that the Japanese often feel guilty - like they are "taking" organs from American people who are also waiting on the list. (Even though it is all monitored under UNOS and follows a very strict protocol.) I wondered if she thought I would be upset - feel outraged - but I felt none of that. I mean, listen - I am a donor Mom. I don't at all - for a second - know what it feels like to be on the other side of the hall as a Mom of a child waiting for a transplant. But I do know this: If I had a child who needed a transplant to live - and I lived in Japan - I would either MOVE or fundraise. I don't blame anyone for one second for doing anything and everything they can to save their child. I would (and tried to) do the same exact thing.
This blog post may not change too much in Japan - except maybe a mind or two of a Japanese person reading this. (There are, according to my stats, over 2,000 readers of Chasing Rainbows in Japan!) If that happens, I would feel like Gavin saved yet another life. Truly. Hopefully, when the documentary comes out, I will be able to share it here to get it in front of more eyes - and, God willing, change many, many more minds. But I do know that I am honored, truly, to be a small part in helping to make a change in Japan.
Are YOU an organ donor... wherever you live in the world as you're reading this? If not, I hope this post - and Gavin's journey - has inspired you to register. You can easily register if you live in the United States on the UNOS website. Or search your country or region and "how to register to become an organ donor" online. It doesn't take long.
I always say, most people can't relate to something until it hits home. Please - register to become an organ donor before the next person who needs an organ is someone you love. As I tell my children - we are all connected.
Tonight I am sending the promise of hope to Japan. I am feeling certain that change is coming to their country...