Sunday, April 30, 2017

Camp Me Too

On Friday, Brian and I dropped Becca off at Camp Me Too, through Stella Maris Hospice. Camp Me Too is a three-day, two-night camp designed to help grieving children learn ways to explore their grief through innovative tenchiques. A few months back she had participated in a one-day program designed for the same thing. She came home and asked to go to the weekend. We got to the camp, checked her in, got her settled in the bunk and said our good byes in one of the halls. All the campers and volunteers left to start their weekend. We, along with the other parents and guardians, were left with one of the program coordinators. She explained a little bit about the weekend and answered some questions then sent us on our way. 

Sunday morning, we were back at 10am to be reunited with Becca and to find out more about the weekend. Each camper is paired with a great. Becca's buddy came from a family of 10 kids (2 sets of twins, she was one of those sets, and out of the other set one had passed away). How perfect of a match. Becca had some break through and opened up to others regarding her story. She connected with her buddy and knows she is not alone in her journey. After we were reunited, the campers and buddies went on a nature walk while the parents and guardians went to the "counseling ring" to hear more about the weekend and get some tips on helping the kids continue their journey. They started the weekend with a secret reveal of the buddies. Saturday seemed to be jammed packed with activities including Drums and musical instruments, nature walks, story sharing, horses and discovery and expression of feelings. The campers and buddies retuned to the ring after their walk and the closing ceremony was had. Each camper/buddy pair came to the center of the circle. The camper said what the best part about camp was as well as one thing they learned from camp. It was amazing to hear what the campers got from the's okay to be angry, not to take your anger out on others around you, you don't have to always be happy, being sad is ok, laughing is ok even in an angry moment. Then it was the buddies turn to give something to the camper, each buddy gave their camper a rock with one word on each side. One side was their first impression of them and the other side was a trait they saw in them to hold onto in the future. Finally, they did a butterfly release. Watching all the butterflies up above us was therapeutic for everyone. Becca even said one landed on her by her heart.

We know Becca won't share everything about the weekend with us and that is okay, as long as we know she got something out of it, even the hard parts.

Wednesday, April 26, 2017

An Old Photo

An old photo taken around April 22, 2015.

Sunday, April 23, 2017

Gilchrist Pediatric Service of Remembrance

What a world wind weekend, lots of emotion, ups and downs. Friday night,  Becca went out with Kenzie, her cousin,  and then had dinner with Aunt Susan, Uncle Digit,  Josh and Devin (my sister and family). She enjoyed her time with them and celebrating her birthday along with Josh and Kenzie's. Brian and I stayed home and as best as we could prepared for the weekend ahead. 

Saturday morning, we headed to synagogue to celebrate Wyatt's (my cousin Jamie's son), bar mitzvah. He did a fabulous job. Lots of birthday wishes for Becca. Wyatt's mitzvah project was in honor of Ian. He raised money for Camp Simcha Special. One of Ian's favorite part about camp was opening day. The money will go towards making opening day extra special. Way to go Wyatt, we are so proud of you. 

Around 4pm, there was a knock at the door, a surprise for Becca....Bethany, her best friend. We worked it out that she would surprise Becca by coming over and sleep over. Bethany cane with balloons and presents in hand. Becca had no idea.

We have 5 people who celebrate birthday in the months of April and May; Nana, Josh, Becca, Me and Kenzie. One celebration for all was had on Saturday night. While sitting around having cake, lots of stories and picking on people happened...this added lots of laughs and memories. 

Sunday morning, we (Nana, Pop,  Aunt Susan, Uncle Digit, Kenzie, Josh along with the 3 of us) headed to the cemetery with balloons and a cupcake to celebrate Ian. A candle was put into the cupcake and Becca blew it out. One balloon was tied to his Spiderman flag while the other one was released up to the heavens. A few Ian stories were told with lots of tears. 

We finished the weekend off with Gilchrist Pediatric Service of Remembrance. This was a wonderful and meaningful way for us to end the weekend. Some music, readings and photos of the kids lost over the past 2 years. I leave you with 2 of the readings which hit home with Brian and I. 

My Many Colored Days by Dr. Suess
Some days are yellow.
Some ads blue. 
On different days I'm different too.
You'd be surprised how many ways 
I change on Different Colored Days. 
On Bright Red Days how good it feels
to be a horse and kick my heels!
On other days I'm other things. 
On Bright Blue Days I flap my wings.
Some days, of course, feel sort of Brown. 
Then I feel slow and low, low down. 
Then comes a Yellow Day and Wheeee
I am a busy, busy bee.
Gray Day...Everything is gray. I watch. But nothing moves
Then all of a sudden I'm a circus seal! On my Orange Days 
that's how I feel.
Green days. Deep deep in the sea. Cool and quite fish. That's 
On Purple Days I'm sad. I groan. I drag my tail. I walk alone.
But when my days are Happy Pink it's great to jump and just 
not think.
Then come my Black Days. MAD. And loud. I howl. I growl at 
every cloud.
Then comes a Mixed-Up Day. And WHAM! I don't know who 
or what I am!
But it all turns out all right, you see. And I go back to

I Could if They Would by Mattie Stepanek
If they would find a cure when I'm a kid...
I could ride a bike and sail on rollerblades, and
I could go on really long nature hikes.
If they would find a cure when I'm a teenager...
I could earn my license and drive a car, and
I could dance every dance at my senior prom.
If they would find a cure when I'm a young adult...
I could travel around the world and teach peace, and 
I could marry and have children of my own.
If they would find a cure when I'm grown old...
I could visit exotic places and appreciate culture, and 
I could proudly share pictures of my grandchildren.
If they would find a cure when I'm alive...
I could live each day without pain and machines, and 
I could celebrate the biggest thank you of life ever.
If they would find a cure when I'm buried into Heaven...
I could still celebrate with my brothers and sister there, and 
I could still be happy knowing that I was part of the effort. 

Saturday, April 22, 2017

Happy 14th Birthday and 1st Angel Birthday

A bitter sweet day, with so many mixed emotions. More than I thought I would...really wasn't sure how I would feel, but the anxiety has been high this week. This is 14 and forever 13. So incredibly proud of who both kids are...Ian with all he lives he touched over his 13 years. Becca with all she has been and done over 14 years, especially how she has handled the past 7 months. We have had our ups and downs, and will continue to have them over the years but know we will celebrate both kids on every April 22nd.

Ian we hope you are having a party up there with all the family and friends. You deserve it buddy.

Becca we wish you a wonderful birthday as well. Filled with fun and laughter as you too are surrounded by family and friends.

Monday, April 17, 2017

Spring Break

Becca with her cousins and the plagues.
Becca and her friends being NUTS at Turkey Hill.
Becca and friends being nuts again.
View from the boat of  Aunt Mary Jane and Uncle Mel's home.
The humming birds having some sugar water. They enjoy every evening....many of them.

Spring break has come and gone...and
what's better than having a little bit of everything. Some days laying around in bed all day, a day with some good friends, holidays with family, and a long drive to visit family. We had some difficult moments but worked through them, laughed some, cried some, smiled some. We had beautiful views from our aunt and uncle house, as well as humming birds. Saturday we went into New Burn, had lunch and walked around. Sunday morning, it was time for sailing, however, the wind had another plan. We got about a mile and a half from the house, the wind picked up to over 20 miles per hour and would only increase as our distance continued so it was decided to come back in. So Sunday after not going sailing, we ended up going into Original Washington and walked the pier...look at all the snap turtles we saw. It was a calming and relaxing Spring Break. Now it is back to and school.

Our view from Aunt Mary Jane and Uncle Mel's home...look at their was wonderful.

Family photo out and about on one of our walks and days out.

Friday, April 7, 2017

'7 Things I Learned Since the Loss of My Child' By Angela Miller

Child loss is a loss like no other. One often misunderstood by many. If you love a bereaved parent or know someone who does, remember that even his or her "good" days are harder than you could ever imagine. Compassion and love, not advice, are what's needed. If you'd like an inside look into why the loss of a child is a grief that lasts a lifetime, here is what I've learned in my seven years of trekking through the unimaginable. 

1). Love never dies.
There will never come a day, hour, minute or second I stop loving or thinking about my son. Just as parents of living children unconditionally love their children always and forever, so do bereaved parents. I want to say and hear his name just the same as non-bereaved parents do. I want to speak about my deceased child as normally and naturally as you speak of your living ones. Even after just 7 months this holds true for me. Some days are harder than others to hear Ian's name but I still want to speak of him. 

I love my child just as much as you love yours--the only difference is mine lives in heaven and talking about him is unfortunately quite taboo in our culture. I hope to change that. Our culture isn't so great about hearing about children gone too soon, but that doesn't stop me from saying my son's name and sharing his love and light everywhere I go. Just because it might make you uncomfortable, doesn't make him matter any less. My son's life was irreversibly short, but his love lives on forever. And ever. He touched many in his short life and one of my fears is that he will be forgotten by others. 

2). Bereaved parents share an unspeakable bond.
In my seven years, navigating the world as a bereaved parent, I am continually struck by the power of the bond between bereaved parents. Strangers become kindreds in mere seconds--a look, a glance, a knowing of the heart connects us, even if we've never met before. No matter our circumstances, who we are, or how different we are, there is no greater bond than the connection between parents who understand the agony of enduring the death of a child. It's a pain we suffer for a lifetime, and unfortunately only those who have walked the path of child loss understand the depth and breadth of both the pain and the love we carry.

3). I will grieve for a lifetime.
Period. The end. There is no “moving on,” or “getting over it.” There is no bow, no fix, no solution to my heartache. There is no end to the ways I will grieve and for how long I will grieve. There is no glue for my broken heart, no exilir for my pain, no going back in time. For as long as I breathe, I will grieve and ache and love my son with all my heart and soul. There will never come a time where I won’t think about who my son would be, what he would look like, and how he would be woven perfectly into the tapestry of my family. I wish people could understand that grief lasts forever because love lasts forever; that the loss of a child is not one finite event, it is a continuous loss that unfolds minute by minute over the course of a lifetime. Every missed birthday, holiday, milestone– should-be back-to-school school years and graduations; weddings that will never be; grandchildren that should have been but will never be born– an entire generation of people are irrevocably altered forever. In one week, we will celebrate his 1st heaven birthday...Ian would be 14. Becca will be 14. The anxiety leading up to this day has been up and down and will be up and down as the week continues. We plan on celebrating the kids separately. Over the years, Brian and I talked a lot about how Ian would have been had he not been sick, for us that part of grief went way beyond his death, what kind of trouble would he have gotten into. Based on the mischief we saw in his eyes, it would have been a lot. 

This is why grief lasts forever. The ripple effect lasts forever. The bleeding never stops.

4). It's a club I can never leave, but is full of the most shining souls I've ever known.
This crappy club called child loss is a club I never wanted to join, and one I can never leave, yet is filled with some of the best people I've ever known. And yet we all wish we could jump ship--that we could have met another way--any other way but this. Alas, these shining souls are the most beautiful, compassionate, grounded, loving, movers, shakers and healers I have ever had the honor of knowing. They are life-changers, game-changers, relentless survivors and thrivers. Warrior moms and dads who redefine the word brave.

Every day loss parents move mountains in honor of their children gone too soon. They start movements, change laws, spearhead crusades of tireless activism. Why? In the hope that even just one parent could be spared from joining the club. If you've ever wondered who some of the greatest world changers are, hang out with a few bereaved parents and watch how they live, see what they do in a day, a week, a lifetime. Watch how they alchemize their grief into a force to be reckoned with, watch how they turn tragedy into transformation, loss into legacy.

Love is the most powerful force on earth, and the love between a bereaved parent and his/her child is a lifeforce to behold. Get to know a bereaved parent. You'll be thankful you did. So far this holds true of the few ones we have met....Michelle, Eddie, Kathy and Sam.

5). The empty chair/room/space never becomes less empty.
Empty chair, empty room, empty space in every family picture. Empty, vacant, forever gone. Empty spaces that should be full, everywhere we go. There is and will always be a missing space in our lives, our families, a forever-hole-in-our-hearts. Time does not make the space less empty. Neither do platitudes, cliches or well-wishes for us to "move on," or "stop dwelling," from well-intentioned friends or family. Nothing does. No matter how you look at it, empty is still empty. Missing is still missing. The problem is nothing can fill it. Minute after minute, hour after hour, day after day, month after month, year after heartbreaking year the empty space remains. No matter how much time has passed.

The empty space of our missing child(ren) lasts a lifetime. And so we rightfully miss them forever. Help us by holding the space of that truth for us. Passover is among us, the sedars have come and gone, the 1st one. They were hard, I spent most of my time thinking about the past years and how Ian loved his matzah and chopped liver, his gefilte fish and his matzah balls (not the soup just the balls). How he would not make it through the story of Passover before Brian or I would have to start feeding him. By the time everyone else was ready to eat, Ian was done and watching TV. Oh how the empty seat hurts 

6). No matter how long it's been, holidays never become easier without my son.
Never. ever. Have you ever wondered why every holiday season is like torture for a bereaved parent? Even if it's been 5, 10, or 25 years later? It's because they really, truly are horrific. Imagine if you had to live every holiday without one or more of your precious children. Imagine how that might feel for you. It would be easier to lose an arm, a leg or two--anything--than to live without one or more of your precious children. That is why holidays are always and forever hard for bereaved parents. Don't wonder why or even try to understand. Know you don't have to understand in order to be a supportive presence. Consider supporting and loving some bereaved parents this holiday season. It will be the best gift you cold ever give them.

7). Because I know deep sorrow, I also know unspeakable joy.
Though I will grieve the death of my son forever and then some, it does not mean my life is lacking happiness and joy. Quite the contrary, in fact. It is not either/or, it's both/and. Grief and joy can and do coexist. My life is more rich now. I live from a deeper place. I love deeper still. Because I grieve, I also know a joy like no other. The joy I experience now is far deeper and more intense than the joy I experienced before my loss. Such is the alchemy of grief. We try to find joy in everyday and everything we do...not always easy. We spend many times in silence, thinking about things...we laugh, smile, cry, get angry, find joy...treasure, dream and live for we know Ian would want us too.

Because I've clawed my way from the depths of unimaginable pain, suffering and sorrow, again and again--when the joy comes, however and whenever it does--it is a joy that reverberates through every pore of my skin and every bone in my body. I feel all of it, deeply. I embrace and thank every blessed morsel of it. My life now is more rich and vibrant and full, not despite my loss, but because of it. In grief there are gifts, sometimes many. These gifts don't in any way make it all "worth" it, but I am grateful beyond words for each and every gift that comes my way. I bow my head to each one and say thank you, thank you, thank you. Because there is nothing--and I mean absolutely nothing--I take for granted. Living life in this way gives me greater joy than I've ever know possible.

I have my son to thank for that. Being his mom is the best gift I've ever been given.

Even death can't take that away.

Tuesday, April 4, 2017

Why Bad Things DON'T Happen to Good People

 ...always used to remind me that life is like a jigsaw puzzle. Sometimes you pick up a piece and it looks like it's not going to fit. It just doesn't look like it belongs in this jigsaw. Maybe the manufacturer accidentally included a piece from another puzzle. You put it aside and start to put the puzzle together. As the picture in the puzzle grows, it begins to dawn on you that this strange piece might actually have its place. More pieces fit into place and you see clearly now that this piece was in the right box. When you are almost done, you know exactly where this piece is going to go.  And finally, the puzzle is complete, apart from this one piece. When you put this seemingly defective piece in its correct position, it is just what is necessary to make the puzzle complete and perfect. Without it, the puzzle would not work. So too in life,...there are pieces thrown our way that seem like they should not be there. Surely this is not meant to happen in my life? Surely this is not right for me? As life develops and time goes on, we start to see that what happened might just have its place in the bigger picture of life. Eventually, we come to realize that not only does this have its place, it is a beautiful part of the puzzle, entirely necessary to make the story of life complete and perfect. It just requires some patience. was a painful and challenging experience - but it has fit just right and I would not have wanted it any other way. While we would not have chosen for Ian to have had a terminal illness, this was how he was given to us and I can't imagine not having him at all. Most of the time, I think better to of had him with his illness than to not of had him at all. A perfect piece to our puzzle.

Bad things or good things. The easiest way to define bad is by first defining good. ...good is that which leads us towards self-perfection; that which enables us to become great human beings we are capable of becoming; that which helps us to find closeness to God that is available to us. Bad is that which takes us away from God, that which hinders us from achieving our potential. Everything has the potential to be good and everything has the potential to be bad. Our reaction to what happens is the deciding factor. Bad things don't happen to good people. But neither do good things. Things happen that could be either more or less painful. But they are not inherently good or bad. We human beings are the sole arbiters as to whether that which occurs in our lives will ultimately be good or bad. When we first learned of Ian's prognosis, Brian and I made many choices regarding our family and how we were going to deal with what lied ahead. Some of those choices we made right away others over time. Eventually, we decided to cherish every moment we could, to laugh, to be happy, to love and live. Yes there were times when the above didn't happen, when we cried, got angry, fought, or yelled. But it always came back to remembering how we wanted to be with our time together...treasure, dream and live. In the end, we followed Ian's lead on what he wanted and how he wanted to continue to live his life. Of course, we don't go looking for hardship in life, but  when it comes, we are not afraid of it; far from it, we embrace it as an opportunity to strive towards perfection. I'm not sure I believe in perfection but I do understand where the last sentence is coming from.

We all go through pain in this world. It comes at us from the outside. Suffering, however, is self-inflicted. It depends entirely on how we respond to our pain. If we see pain as something real, something tangible and important, then we will suffer. If we see beyond the pain to a deeper truth, then we may still go through the pain, but we do not have to suffer. Basically, we have been in pain, emotionally for Brian, Becca and I but mostly physically for Ian, but not suffering because we knew what we wanted to do with his time...make the most of it and enjoy them. We did go through our moments of suffering...the questions of why and sometimes I felt watching Ian be in as much pain as he was in, was suffering to me...watching your child be in constant pain is horrible...there is nothing you can do to make it better. 

Human beings have this nature versus nurture business, but we have an added dimension -- that of freewill. We are firstly influenced by the external forces in our makeup -- the nature of our genes -- both physical and spiritual. Once we come into the world, there is nurture and experience. But there is also freewill -- the ability to choose and shape our own destiny. You will often hear of the "nurture/nature" debate  --  which of the two factors is more significant in human development. We Jews agree with neither side. What truly has the potential to shape us is our freewill, who we decided we want to be. ...and for freewill to be at all meaningful, it must be real. ...we Jews do not ask for challenges. Who is arrogant enough to believe he will overcome them? We are all human after all. Yet, when they come, we relish our challenges, for they are all the true opportunities of life. I struggle with some of this...I do believe we have the ability to choose and shape our own destiny. However, there are somethings out of our control. Brian and I choice to have kids, we did not choose to have one with a terminal illness. Yet, we did choose how we responded to that illness and what we would to do make the most of it and Ian's life with us. I do believe your time here on earth is set for you when you are born so not all of your choices will matter and are influenced without you even knowing it. So back in 2013 when Ian was so sick and we had to decide it we trached him at that time or let him go...well since his time was not supposed to be over yet we were influenced (by God) somehow to make the decision to trache him.  When his time came on September 15, 2016, I believe it was his time and there was nothing we could have done to stop it. 

Death, ironically, makes us wake up and live. And the fact that people die at various ages -- some even very young -- should make us realize that we can take nothing for granted. If everyone lived until ninety, we would not use our time effectively at twenty or thirty or forty. We need death and we need the fact that people die young to remind us that the end can come at any moment. To remind us to live today in a way that we do not take tomorrow for granted.  Life ... have been a gift. And every extra moment of life is another added gift. Be it one thousand years of extra moments or one hundred years of extra moments or thirty years or ten or five years, or five months or five weeks or even five days....each and every moment remains a gift. Every moment is precious. Every moment is special. Every moment is something to be thankful for, instead of complaining about the moments that we or others were not granted. I think without knowing it the above is how we looked at goes along with our saying; TREASURE YESTERDAY, DREAM OF TOMORROW, LIVE FOR TODAY. We tried very hard to make moments special...even just sitting around the house on a Sunday. The days Brian or I were home as nurse...we tried to cherish them. We asked Becca what things she wanted to do with Ian to have those moments, hence the movie day we had just 3 days before he passed. As Ian's disease progressed it was hard to have these moments outside of the house but we tried to make them happen inside...having the laughter, smiles, and even the tears.

To me this is a perfect metaphor for many things in life, I try not to complain about the things I know I have no control over. Somethings are what they are and there is nothing you can do to change them...such as Ian's illness and prognosis. I know that I do complain about things and try to think about them before doing so, not always possible, or I may realize afterwards and try to reconsider what I am complaining about. Imagine that you are climbing a mountain. For various reasons you need to get to the top. And it's a long and challenging climb. You can't turn back or give up; the summit is where you need to get to. You have two choices. You can groan and grumble and feel frustrated and annoyed all the way up. Or you can accept what you need to do and enjoy the view as you go. In both instances, you will get to the top. But one way is so much more enjoyable than the other. Why would we choose to grumble and groan our way through life, when there is always such a beautiful view to be enjoyed along the way? .

Monday, April 3, 2017


While reading a book this story was told....

A couple once took an anniversary trip to England and were shopping in a shop of beautiful things.

They both liked antiques and pottery, and especially teacups. Spotting an exceptional cup, the woman said, "May we see that? It's so beautiful..."

As the lady handed the teacup to them, suddenly it began to speak, "You don't understand. I have not always been a teacup. There was a time when I was just a lump of red clay.

My master took me and rolled me and pounded and me, over and over, and I yelled out, 'Don't do that. I don't like it! Leave me alone!' But he only smiled, and said, 'Not yet...'

Then, WHAM! I was placed on a spinning wheel and spun around and around.

'Stop it! I'm getting dizzy! I'm going to be sick!' I screamed.

But the master only nodded and said quietly, 'Not yet.'

He spun me and poked and prodded and bent me out of shape to suit himself and then....then he put me in an oven. I had never felt such heat. I yelled and knocked and pounded at the door. 'Help! Get me out of here!'

I could see him through the glass door and I could read his lips as he shook his head from side to side, 'Not yet!'

When I thought I couldn't bear it another minute, he opened he door, carefully took me out, and put me on a shelf, where I began to cool. Oh that felt so good! 'This is much better,' I thought. But, after I cooled off, he picked me up and brushed me and painted me all over. The fumes were horrible. I thought I would gag. 'Oh, please! Stop it, stop it!' I cried. He only shook his head and said, 'Not yet!'

Then, suddenly, he put me back in the oven. Only it was not like the first one. This over was twice as hot, and I just knew I would suffocate. I begged. I pleaded. I screamed. I cried. I was convinced I would never make it. I was ready to give up.

Just then the door opened and he took me out and again placed me on the shelf, where I cooled off and waited, wondering, ' What's coming next?'

Then he handed me a mirror and said, 'Look at yourself.' And I did. 'That's not me!' I said. 'That couldn't be me. It's beautiful...I'm beautiful!'

\And then he spoke: 'I knew it hurt to be rolled and pounded and patted, but had I left you alone, you would have dried up. I know it make you dizzy to spin around on the wheel, but if I had stopped, you would have crumbled. I know it was hot and you suffered terribly in the oven, but if I hadn't put you there, you would have cracked. I know the fumes were bad when I painted you, but if I hadn't done that, you never would have hardened. You never would have had any color in your life. And if I hadn't put you in that second oven, you wouldn't have survived for long, because your hardness would not have held. 

Now you are a finished product. Now you are what I had in mind when I first began with you."

God is the potter and we are His clay. He will mold us and make us, and expose us to just enough pressures of just the right kinds that we may become a flawless piece of work to fulfill His good, pleasing, and perfect will.

So when life seems hard, and you are being pounded and pushed almost beyond endurance; when your world seems to be spinning out of control; when you feel you're in a fiery furnace of trials; when life seems to "stink" of awful fumes, try this...

Brew a cup of your favorite tea, in your prettiest tea cup. Then sit down and think of this story and....have a little talk with the Potter.

(Author unknown)