Tuesday, February 2, 2016

Sending a Promise of Hope...

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.

On average in Japan, there are 50 adult transplants in one year. Shocking, right? But wait... it gets worse.

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...




Thursday, January 28, 2016

Love on the Move...

Hope has been officially done with her high chair for a few weeks now. And yesterday I decided that I'm officially done with it, too. Tomorrow morning I will be bringing it to the home of a first time Grandmother of two. It makes me so happy to know that it will be going to a good home, as silly as that may sound.
Brian stood in the kitchen and started to tear up. "I'm going to miss that high chair! We had so many good times with that thing."

Me:  umm. huh? He seems to have quickly forgotten me on all fours picking up all the food that his sister catapulted from her tray at each meal. 

But he's right. This wasn't his or Gavin's chair. I got rid of those when we were "officially done" having babies and God "officially had other plans" and I had to turn around and buy a new one for Hope. But it still symbolizes a really special time in our life.

I remember why I chose this particular high chair. Not for ratings or reviews... or style, even. I chose it because I'm a romantic. The theme of ALL of our first baby's equipment was "Rainforest" which reminded me of Puerto Rico... which was the final destination of the flight where I was Ed's flight attendant the first day we met. We went back to Puerto Rico several times before we had Gavin and loved going to the rainforest there. So each time I looked at that silly Fisher Price Rainforest high chair - even to this day - I remember the love that brought us each of our children that sat in that chair. Sounds ridiculous and over the top and super-syrupy, doesn't it? But it's truly how I felt when I chose the theme - and truly how I feel tonight.

I remember the first time we put Gavin in his high chair... only to take him out and try again months later. It took him a long time to gain head control and trunk control. The day that he did finally sit in the chair was a huge event. I mean - we should have had a party. And when I learned how to puree all of Gavin's food and he started to eat - even though it was predicted that he wouldn't - it was a reason to celebrate all over again. That high chair was also the setting for lots and lots of therapy. He finger painted in that chair - he helped bake cookies in that chair - he had speech therapy and feeding therapy and bubble blowing and more in that chair. I have so many wonderful memories of Gavin in the kitchen in the highchair.

When Brian came along, we (and by we I mean I, of course) just HAD to have the same exact high chair for him!! No other high chair or theme would do!! If you can just imagine both boys, side by side in matching high chairs - oh, wait! You don't have to imagine it!! Here's an adorable video that, trust me, you will be really glad you watched...

When I was pregnant with Hope, I quickly considered a "girly" high chair - but then just as quickly dismissed the idea as ludicrous. How could I change it up now?!? If there were ANY time for me to be reminded on a daily basis about the love that brought each of our children to this earth and into a high chair - it was after the death of the child we chose it for in the first place.

This is just how my mind works - and how my heart copes.

It was a joy to watch Hope in this high chair from the first day as a tiny little peanut... to the last when she would climb in and buckle up herself. 

But surprisingly, I am ready to let go. As Hope moves on from her baby things, I find myself feeling a strange sense of relief that I didn't expect. I am happy for forward progress. I don't feel that longing that I used to feel in my heart - a tugging that we weren't done just yet. 

So tomorrow, the Rainforest high chair will have a new home. I hope they somehow can feel that this is more than a mere plastic chair. It's a symbol of love on the move. And just like love, my memories of those precious days will never die.


Monday, January 25, 2016

Blizzard in my Bones...

Perhaps you heard - there was a bonafide BLIZZARD where we live! The sky dumped close to 28 inches on our area. It was so fun to watch the snow fall outside our windows. 
And at one point, we even went out while it was snowing! 
It was windy! 
So windy that Brian almost blew away!
It was freezing! 
But it wasn't too cold for Hope to bring out her stroller and take her snowball baby for a walk! 
We laughed until our tears froze on our cheeks and then quickly rushed inside for hot chocolate. We waited out the storm by playing inside and crossing our fingers that we wouldn't lose power - which we didn't! While we were playing in the basement, I had to capture Brian and Hope's new party trick - Tandem Sliding. Ha!
When the snow seemed to slow down a bit, we got brave and decided to open the front door. It was an incredible sight!!
Ed was up much of the first night with our tractor that has a plow attachment and a snowblower to try to stay on top of the snow while it was still falling. Eventually, he had to throw in the towel. It was so cold and so windy that his face literally froze. An interesting alternative to Botox, but I'm not sure it's sustainable long term. But I digress....

By late Saturday afternoon the snow stopped. We spent all of the day hanging out inside. We watched a movie (Ice Age, ironically!), played some games and I even started to take down some Christmas decorations. I know, I know - it's early to take down the Christmas tree... but I thought I'd get a jump on it. (ha!) After the kids went to bed, Ed and I went back out to attempt more snow removal. I did my best, but I had to give up after about an hour outside. I was worried that I would wreck my body and joints before the next day which I knew would be all about playing in the snow with the kids. Ed ended up hiring someone to plow - thank God. Our new driveway is long - and I didn't want to sit inside worrying about him.

The next morning, Brian woke up and was stunned when he looked out his bedroom window. He's never seen that much snow in his entire life. I knew this was going to be a weekend that would be embedded in his memory forever. I wanted him to be able to look back and remember "the Blizzard when I was in first grade" as super fun!! Hopefully, he will.

Round one outside was during Hope's nap in the morning. I wanted him to be able to play with us without either of us being pulled away to help Hope. I loved watching him make snow angels!
Also fun? Watching him attempt to get up afterward.
He made what he called a "castle and these are the guards, Mom - and can you stop singing "Do You Wanna Build a Snowman now, please?" 
Well, he told ME!
He built a tunnel with Ed...
And we went for a little walk...
Oh, and he climbed a mountain. No biggie. Ha!
After lunch, it was Hope's turn to go outside. As I expected, she was completely fearless and up for anything! Our driveway still had snow packed on it so I took advantage of the hill and sent her on her first sled ride! As you'll see at the end of the video, she was definitely into it.
Brian got in on the driveway fun, too!
We did it again...and again...
and again.
Hope even took ME for a sled ride!!
She also took me - and the sled - but not me ON the sled this time - for a walk down our quiet, empty street.
There was so much snow lining both sides of the street that she couldn't even see over them to find our house!
Brian couldn't wait to show Hope his tunnel and insisted that she crawl through it.
Not going to lie - I was a little afraid she would fall into a snow drift and I wouldn't be able to get in and pull her out! But she made it through and came out smiling, as usual.
Hope went on the sled a few more times before Ed took her inside. I thought she had been out long enough.
 It was really cold! But she is so tough, I'm sure she could have hung out a lot longer than I let her. But worrying is my job!
Brian and I stayed out for a little while longer. I loved watching him sled down our front yard. His laugh is always contagious.
All of this - this whole post - seems like the picture perfect scene, doesn't it? Blizzard! Family time! Playing in the snow!!

But the reality is - I literally could have burst into tears at every turn. I never know when my Rheumatoid Arthritis will flare up - or if something I do will trigger or exacerbate it. Unfortunately, Sunday morning I woke up feeling like my bones were crumbling. The pain was so bad - and the swelling, too - that I started a round of Prednisone along with pain medicine to help. (It didn't yet) 

Having RA is what it is - I can't change it. I try to approach it like I do everything else in my life - with a positive outlook. But I have to tell you - it can be very depressing. I have a chronic, progressive disease. I try not to complain on a daily basis - or bring it up much at all to Brian, especially. I do this because it will only get worse. If I can't hack it now - or show up in all areas for my kids, especially physically - then I'm screwed!! More like THEY will be screwed. I feel like I need to create a lot of long lasting memories of an active, engaged, fun, happy Mom now just in case it gets to the point that I really can't do as much down the road.

If you know even a little bit about me - it crushes my spirit to even think this way.

So, when it's especially painful - like it was on this glorious snow day - this possible "once in a lifetime blizzard" - I go into a place mentally where I can block out the pain and focus on being with Brian and Hope. Does that work? Well, not really... but sometimes I can distract myself from feeling. I get them in and out of all the layers of their snow gear - not an easy feat and it takes me quite a while. I play outside and try to avoid climbing into the snow where it takes up a lot of my energy to trudge through the deep drifts. I help pull Brian onto his sled and hold him there until he counts down for blastoff. I know I end up paying for it later, but that's okay. It's okay - at least to my heart, not my body - because creating a lot of long lasting memories of an active, engaged, fun, happy Mom now... just in case... is just as much for me as it is for them. And if they don't remember, it's written here with photo proof. 

"Mommy survived the blizzard in her bones during the blizzard of 2016 - and she was so happy to make memories with both of you."

(p.s. - Not looking for arthritis advice. I'm holding off on any RA meds as I'm still nursing Hope... and I'm under the care of a fabulous rheumatologist.)


Wednesday, January 20, 2016

Hope Rising...

When I realized - and then it was confirmed - that I was pregnant with another baby on the very day that Gavin died, I felt every feeling you can imagine. My biggest concern was what it would be like to grow a baby under a broken heart. I was so afraid of losing her if I succumbed to grief. Between that and parenting a little boy who missed his brother, it was quite a challenging time. 

We made it through. 

I didn't give much thought to what it would be like once she got here and started growing outside of my body. I'd done this parenting thing - how different could she be?

Very different, as it turns out. In all the best ways.

I am definitely not used to a child who insists on doing things alone - that's a new one for me. Hope has a confidence and desire for independence that seems past her young age! 

But what do I know, really. I only have my own parenting perspective to go on. Gavin's milestones were delayed - and Brian was calm and quiet and very happy to let us do things for him! It could be that Hope is my first "typical" child!

All I know is this. The days and weeks and months and now close to two years following Gavin's death could have been so much worse. Suddenly we found ourselves grieving and anticipating. Mourning what was and planning for what would be. I think that time would have been - could have been - and still can be so much harder if it weren't for the gift of this child.

In many ways, Hope has a LOT in common with her brothers. She is very sweet, incredibly affectionate and loves her family. Every morning when I open her door I hear her say "Hi Mommy!" before she sees my face. I am always greeted with a big smile and a hug. Then she instantly asks for her Daddy and Brian - wanting to know where they are. At night, she heads off to bed like a dream. I have been saying the same little "ditty" to my children since Gavin was an infant. I whisper, "I...love...you! You...are...so...so...special." Hope can say it along with me now, but then she insists that I do it a few more times. Once for Daddy, then for Gavin, then for Brian. And she would never dream of going to bed without hugging and kissing her brother and her parents. 

We have a blast together during the day when the boys are at work and school! While I'm getting dressed (on the days that I decide to get out of my pajamas, ha!) you can find Hope rooting through the "Hope proofed" drawers of my jewelry box or trying on my hats in front of the mirror.
We always have fun in our basement playroom. She loves to color at the art table or on the new easel that Santa brought. But she's busy!! She colors and then moves on... plays and then she's off. There's too much to do and so much to see!
She loves to put on sunglasses - big and small - but gets very concerned that you won't know who she is behind the tinted lenses.
I made the mistake of calling her "cool" and, as you'll see, she quickly corrected me. (I love this video!)
Don't worry, Hopi - we know it's you.
This girl LOVES to be outside, too. Thanks to her cousin, Sean, who had Hope for pollyanna this Christmas - she has a new shopping cart that she can use to cart around sidewalk chalk, rocks, leaves...you name it!
One thing I love about Hope is her pretend play. It's so cute to watch her feed her baby in a highchair just to turn around and be the doctor to her lambie.
Speaking of highchairs...

Last week I brought Hope down from her nap and told her I was going to make her lunch. I pulled out the bread and started making a sandwich and happened to see something out of the corner of my eye. I laughed so hard. Hope had climbed onto one of the chairs at the kitchen table and was sitting there patiently waiting for her lunch with the biggest smile on her face. Her first "happy meal" was a peanut butter and jelly sandwich on raisin bread.
It's clear she's been watching from her highchair this entire time. As soon as she was done, unprompted, she got out of her chair and carried her plate to the counter just like Brian does! I'm glad my floors are clean (at least they were at the filming of the video - ha!)
Brian is thrilled to have her at the table! 
I have never liked the expressions that are attached to ages - like the "terrible twos" or the "train wreck threes" (I made that one up, but you know what I mean...). Whenever I start talking about how Hope is so busy and is into everything and has me chasing her everywhere - I am only speaking from a place of exhaustion (at 45 years old!) and wonderment. I'm just not used to such an active child!! She's not being "naughty" - she's being Hope! She is a good listener - and can sit still, like she does for her haircut...
...and doesn't pitch fits at all. But she can be busy - and curious! I always tell people this: when Hope does something wild or is SO curious about something she HAS to get it or expresses herself when she has a need... I remember. I remember that I had a little boy who I prayed would do something "wild" or work hard to get into something he wanted or was able to express himself when he needed something. I don't take anything for granted because of Gavin's life - not because of his death. And I remember that everything is a phase that is necessary for growth. So when Hope does something that might frustrate me in the moment, I remind myself that if this were Gavin in front of me, I'd be throwing a party about that exact thing.

The four of us were at one of Gavin's favorite places for Ed's birthday a couple weeks ago. Arnold's Family Fun Center. 
I am sure he was with us and was just as amazed as we were at his sister's bravery. She has been pretty timid about going onto the inflatable bounce houses and slides with Brian - as much as he has encouraged her to join him. But on this day? All bets were off. I was STUNNED when my little two year old climbed the inflatable (and steep!!) ladder and went down the big (HUGE - AND STEEP!) slide!! 
The first time she went down with Brian. I'm not sure who was the most excited! Listen to the reactions... 
The second time they went down together again and I filmed it in slow motion to get the full effect of their reactions. This girl has no fear!! 
After that, she was confident to go up and down over and over all by herself. We were cracking up!! And, as you can see by the amount of photos - we were pretty obsessed with this new milestone. I'm feeling confident I have another ride buddy when we go to amusement parks!
 Hope and I have a special bond, for sure. We are joined at the hip from morning until night and, much to my own surprise, we're still nursing at nap and bedtime! But the minute Brian or Ed are in sight - I'm toast. I think her favorite times of the day are when the school bus arrives home in the afternoon - as you can hear by her reaction to seeing him... 
...and when her Daddy comes home. 
And I am sure, in the dark of night or in the quiet sunlight, she has her favorite times with Gavin, too. It's clear that she knows him. 
Yes, I definitely feel it would have been much harder if not for the gift of this child. And as all of us, Brian included, are raising Hope... we can feel our own hope rising.

Life is so unpredictable.


Monday, January 18, 2016

Changing the World...

Today is Martin Luther King Jr. Day. It is mind boggling that there are still racial injustices and blatant discrimination in this country so many years after Dr. King's assassination. If you are a parent, you may have had the conversation about what this day means and the history of slavery and discrimination with your children. And, if you're like me, you were met with stunned faces, disbelief and sadness. Brian can not wrap his brain around the fact that people were and, quite frankly, are treated differently because of their race. 

"That is so not fair," he told me today. "We're all the same because we were all made by God and he made us all different and special."  Preach it, Brian!

This afternoon, Brian participated in a service project and cooking workshop at HomeCooked. He and a group of kids made a dinner to bring home to each of their families - and each of them made another one that will be delivered to local families in need. It's so important to us, above many other things, to raise our children to be kind and compassionate and to have an understanding of what is happening outside of their comfortable, happy life. Brian seems to understand that in a way that impresses me for his age. On the drive there, the two of us were talking and I asked him, "Brian, do you think you - a seven year old kid in the first grade - can change the world?" I was really surprised by his answer.

"Yes! Of course I do!" he confidently replied.

I smiled and said, "Really? How is that?"

"Well, you can change the world by not throwing cans in the water and by respecting the Earth and by recycling. And also by being a good person so other people see you being a good person and they want to be good people, too." he explained.

"Wow - that's a great way of looking at it, buddy! Kind of like a chain reaction! If you are kind and good and respectful of the Earth and the people that live on Earth with you - then others will see that and want to be like you... and then other people will see those people and so on and so on and so on..."

"EXACTLY!" he exclaimed. "That's exactly how people can change the world!"

"Even a first grader!" I added.

"Yes! Definitely a first grader." And with that, we pulled into the HomeCooked parking lot and got ready for his world changing afternoon.

Coincidentally, Brian was paired up with a young boy named Gavin - just a little bit older than him. I stuck around for a little while and it was definitely bittersweet to hear things like, "Brian, can you help Gavin hold the bowl?" or "Gavin, you and Brian are in charge of..." 
You could say it was a little bit emotional...for both of us.
Brian came home with a delicious Mexican Tortilla Lasagna, a cheesy mexican rice casserole and chocolate chip caramel bars for dessert. He made all of this himself! It was an incredible dinner and Brian was so, so proud at the table as he served us.

 It seems like a perfect day to wrap up his St. Jude Children's Research Hospital "Mathathon" fundraiser! (The fundraiser officially ends tomorrow when Brian hands in his Math worksheets and his donation page.) This was Brian's very first Fundraiser and he was really excited about it! I was on the fence about helping him or letting him do it all on his own. In the end, I decided to post it on Facebook, Twitter and Instagram - but he was in charge of writing the message on his personal page and also writing the thank you notes to the donors. He was excited to raise money and decided to donate any prize he would win back to the children at St. Jude's. I gave it a lot of thought and decided to help him because I wanted his first fundraiser to be big. I was hoping that a very successful first experience will put the "bug" in him to continue to want to do altruistic things down the road. I want to model what it looks like to care about others almost as much as or even more than we care about ourselves and our comfortable life.

The day after we started the fundraiser I couldn't wait for Brian to get home from school. As soon as he sat down for his snack, I broke the news to him that he had raised over $300.00. He was STUNNED. Here was his reaction...
As of now, he has raised $1,505! He is over the moon about this and it has definitely inspired him to continue to do nice things for others. Here is a personal thank you to everyone who has donated with a speech that Brian wrote himself:

If you would still like to donate - you can check THIS LINK to see if it's still operating. It should be open until the end of the day on January 19th, 2016. Thank you!

We're very proud of our son. 


"We are bound together in a desire to see the world become a place in which our children can grow free and strong.
We are bound together by the task that stands before us and the road that lies ahead.
We are bound.
And we are bound."

Thank you to James Taylor for those words from one of my favorite songs, "Shed a Little Light."
Thank you to Martin Luther King, Jr. for absolutely changing the world.
Thank you to all the researchers and doctors and hero patients at St. Jude Children's Research Hospital.
And thank you to everyone who is changing the world - especially those seven year old first graders just like Brian.



Monday, January 11, 2016

The Picture Never Changes...

Lately I have been making the big commitment - that is, hanging things on the walls of our new home. I'm taking it slow - making sure I don't hang things "just to hang things," but giving thought to what should go where.

Some of those things are photos. I created a wall that has profile photos of all three children with current photos beneath that I will change as I get new ones. Except for one...
I love this little arrangement, I do. But each time I turn the corner it is a tough reminder that there is one picture that will never change. Gavin's last school photo.

Brian will grow and Hope will grow and we will get older... but in our hearts and minds, Gavin is frozen as a 5 1/2 year old boy. It stings. Every single time, it stings.

I created another wall. I wanted to hang a family photo and individuals of the kids - but I hate the feeling that I'm leaving Gavin out. Usually I try to represent him in some little way - even if no one can notice. But in this family photo, I hadn't done that. So I decided to hang one of my favorite family photos with Gavin in it and make it an all-canvas wall. Once again, the photos will change... but the portrait with Gavin won't. 
(As it turns out, it's not easy to take pictures of pictures!)

This past weekend we hosted my family for our annual Christmas party. My sister, Meg, from New Hampshire stayed at the house most of the weekend. My brother, Mike, came up from Virginia. And Tom and Bean came with their families and Granny. There were 29 of us. Unfortunately, two of my nieces and my nephew and his wife couldn't make it. And, of course, Gavin wasn't there. But boy - 29 of my 34 favorite people were there and our home was filled with love and laughter and playing and great food.

I'm grateful that we have so much space in our new home and I was able to create my "dream table." One long table that included everybody. There was no kid's table here - all of us were one unit and all the ages were all mixed up. Uncle Mike chatted with Brian and Isabella. Granny was surrounded by her adoring teenage nephews. Ed was across from his nieces. I grabbed my nieces "selfie stick" - got a quick lesson - and then promptly put my brother, Mike, in charge!
We were able to celebrate my great nephew's first birthday after dinner in a sweet way. William, the son of my oldest niece, Emily and her husband, Josh, just turned one! We all sang Happy Birthday and Brian accompanied us on his guitar with his cousin, Isabella, by his side. Those two were inseparable all day!
Before dinner, we all opened gifts from Granny (she loves to spoil all of us) and the kids opened pollyanna gifts from each other.
And the kids all gathered around when we gave Granny a photo calendar with all of her children, grandchildren, great grandchild...and another great on the way! We gave her other things, but this calendar was a big hit. She can look at all the people who love her every single day!
They all posed with her and I found it so hard to believe the beautiful little girl I carried around at my high school graduation is now a married mother... the babies I once held are now men... my nieces all stunning young women. I can't imagine how my Mom feels as she looks at each one of us!
But it was the huge group picture that I organized that still puts a lump in my throat. I set up my tripod and snapped a photo of all 29 of us. Later when I looked at it, I had to hold back my tears. Not for the missing nieces and nephew - because I know they'll make the next one. I choked back my emotion for the little frozen boy who will never again be part of pollyanna... and playing with his cousins. I'll never see him excited around all the chaos and fun... or break into a grin at the sight of his Granny. And he'll never again smile for a family photo.
But then I looked up. At the top of our tree, above all of his Aunts and Uncles and cousins and family sits the custom made angel that I had made after his death. It holds so much symbolism - the green and blue swirling together like the ocean he so loved... the starfish in her hair... the shells on her skirt. It's not the same, obviously. But it reminded me that he was there that day. I just forgot in my busyness to stop and see. But he was as there as Brian's giggles. He was there as baby William's determined crawling. He was there in our singing. He was there in our love.

It's impossible sometimes to navigate life after losing a child. It's the worst possible thing that can happen to someone, really. But somehow the great big love that we shared with him helps to melt our frozen, broken hearts. 
I can still see all of us together in my mind - the love, palpable. And that picture will never change.

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