Wednesday, October 13, 2010

The Eulogy

I need to be quite honest….when asked who will speak today I did not hesitate for a single moment. And then I sat down to write. And I had nothing. Nothing. After 10 months of pouring my heart out in 108 posts on the blog, I had nothing to say. What could I say? And more so, how could I say anything, for to say something would mean accepting the truth. This horrible, nightmarish, heartbreaking truth – that my Brandon, the love of my life, my bashert, was gone forever. And with him, my heart.

I have been to funerals before and heard people speak about the great person that the individual was, about how much they were loved – but that just seems redundant. Redundant because of the 1000’s of hits our blog has received, redundant because of the hundreds of emails, posts, and facebook messages that have been circulating on the Internet, redundant because of all of you who are here today. SO many people loved Brandon – we have heard from colleagues, school friends, teachers, hockey buddies. We have heard from friends around the world. We have heard from fans who were lucky enough to have seen him play and we have heard from other families afflicted by this horrible disease. We have heard from friends of friends and we have heard from strangers. Even ABC News in Pensacola where he played hockey had a segment about him on Monday night.

I have read all the messages, all the posts and I have realized something – you are not here because of how special Brandon was, you are here, and people are mourning all around the world, because of how special Brandon made YOU feel. And that was his greatest gift – whether you were a close friend, an acquaintance, a fan, a neighbor or a stranger – when Brandon focused on you, you knew he was focused, and he cared – whether he advised you, guided you, chatted with you or simply smiled at you – at that moment he made you feel special.

And I was the luckiest recipient of this gift. Not a single day went by without him explicitly telling me he loved me. Not a single day went by where he did not turn to me to tell me I was beautiful – even today, like this, he would have said that to me. I knew I was his priority no matter what. He was taking care of me always.

And our children, our beautiful Dana and Koby – they know without a doubt how much daddy loved them. The second he walked into the room, the second they heard his footsteps coming down the stairs, their faces would light up for daddy. And his face would show that same adoration in return – always. “I love my family” is what we heard every day. My children lost the most this week, they lost the best parent possible, they lost the ability to know just how special Brandon was, and how special they could feel with him.

Brandon’s death is wrong. I know this from the core of my being. I know it from all of you. This is wrong! My next speech about Brandon was supposed to be on our 10th anniversary, when we had planned to renew our vows, not today, on this horrible day!!

You each have your own cherished memories of Brandon. Some of you have shared those stories and some have chosen to hang on to yours. I have 6 years of memories, each one touches my heart – and so what can I share today? And then I decided – the final blog post of “Cancer – Our Fairytale.”

And here it is:
On Saturday morning the phone rang at 7:30am and my heart skipped a beat. Nothing good can come from a call this early on a Saturday. It was Brandon’s mom. Brandon had suffered a seizure and the hospital called to come in right away. And I ran…literally. I balled the entire way to the hospital. Please no, please let this be nothing, please no. When I got to the hospital I was so scared to get in the elevator. Part of me wanted so badly to run the other way. I got to his room and ICU was there checking his vitals, prepping to take him for a CT scan. And there was Brandon, my love, with his eyes rolled back and his body limp. And I lost it. We rushed him to CT and our friend Leslie, who is a doctor, walked in with the technician to read the scan. He came out and told us that there was a large mass. He did not have to say anymore.

The Drs gathered us in a room to talk. They could run an MRI but the outcome would not change. It was time to just make sure that Brandon was comfortable. How long? How long would we still have with him? There was no way to tell – it could be days.
And so, from 9am Saturday morning, until 1pm Monday afternoon, his mom and I did not leave his side. I lay down on the bed beside my love. I held his hand, I pulled his arm around me, I spooned with him, I stroked his hair and face, and I told him I loved him a thousand times. I slept better than I had in the previous 2 months, 2 months without Brandon by my side. This is where I belonged – next to him…hearing him breath, feeling him beside me. People came in, people left, but I never left my spot on his chest, MY spot since we have been together.

His mom sat by the bed during that same time, held his other hand, kissed his forehead, sang him lullabies, wet his lips to keep them from drying out and cooled his head with damp clothes.

As the hours passed Brandon’s breathing became more and more difficult. He was suffering now. We told him it was ok to go.

At around 10:30am the Dr came in and told us we may still have another 24 hours of this. Arlene and I looked at each other – we needed to tell all our family outside that it could be a while. Arlene decided she would go. After 2 days of sitting by his bed, she would leave for 3 minutes to walk down the hall.

And then Brandon, my prince, gave us both his final gift. As I lay looking up at him, with the 2 of us alone in the room, there was suddenly a change. All of a sudden his eyes, which had been glazed over for days came into complete focus, their blue colour returned. And he looked at me…really looked at me. “Are you looking at me? I love you” I yelled. And then he smiled, Brandon, in a coma for 2 days, smiled. And then he died.

And that is the essence of Brandon – even with his final breath, he spared his mom the horror of the moment and he saved one last memory and smile for me. What a gift!

When I started this fairytale 10 months ago this ending was not an option. Throughout this entire struggle this outcome was not an option. It was supposed to end with “happily ever after”. It didn’t. But our love is forever after. And my dear Brandon, who wanted to live more than anything – for me, for his daughter Dana and for our baby Koby, made sure that he showed me that love until the very end. As I said, I have never, for a single second, ever doubted how much Brandon loved me, nor have I ever questioned my love for him.

But this last moment…. Thank you my love - for Every moment, for our 2 beautiful children, for loving me and allowing me to love you.

This fairytale will not close with the words “the end” for this does not end…

I love you so much Brandon, with my whole heart, and I will love you forever.

Monday, October 4, 2010

Funeral details

Brandon died at 11am this morning.

Funeral will be at Beth Tzedec Synagogue on Weds at 11:30am.
Details will be on Benjamin's website at www.benjaminsparkmemorialchapel.ca

I love you Brandon.

Sunday, October 3, 2010

NO!!!!!!!!!!!!!!

Yesterday morning Brandon had a seizure.
The CT scan showed irreparable damage to his brain.
Brandon is no longer waking up.
They have stopped all treatment.
Focus now is keeping him comfortable.

And we wait

We wait for....

What kind of fucking fairytale is this?

Nightmare
I would give anything to wake up.
I am empty.
My heart is broken - forever.

Friday, October 1, 2010

No Surprise Visitors - please

As much as we appreciate the outpouring of support, I would like to ask people NOT to drop by the hospital without calling first. Several reasons:

1. Brandon is in no state for visitors...and neither are we
2. It is really a time for close family ONLY
3. He is not there for display....as people come in and just stare --- I know people don't mean to d0 that, but it feels that way
4. I don't want Brandon to know how bad things are, and people dropping in who have not been in contact or on visits before is just too fishy (Brandon can still hear and is not an idiot)
5. We need room for the Drs to do their checks and it is a small room
6. We just can't handle other people there right now (who have not checked with us first)

Once Brandon is feeling better, we will have a celebration and you can all come give him a hug.
But not now.

Hope everyone understands - BIG HUG to you all!!

This needs to get better

Not sure why, but I came to the hospital today with such high hopes....today he would be better, today would be the turning point on the road to recovery....

On the way to the hospital (with the kids in tow), Brandon's mom called me to come up alone first, to assess whether we should bring in the kids. And my heart sank.

Walked into his room and there he lay - unresponsive, not moving, not speaking. I called out his name - nothing. And I lost it. Totally lost it!

I did take in the kids, hoping that they would stir the same reaction as yesterday. He did manage to put an arm around Koby, but no words, no eye contact. And Koby lay there completely still, as if he knew today was different than yesterday. And then we brought in Dana - and she was scared and did not want to sit with Daddy or hug daddy. We finally got her to kiss him on the head. No reaction from Brandon.

He did have a few lucid moments. I asked him if he loved me. After struggling for several moments he murmured one word - "oodles" - our little expression for each other - I love you oodles. And whenever I would lean my head against his lips I would get a kiss. Moments...moments when there is a speck of hope in this horrible nightmare.

Medically he is not doing well. He has swelling in his brain (caused by the virus in his brain), liver issues, kidney issues, bladder virus...and today a new concern about Graft vs Host (which would be the biggest concern). The Drs are doing everything they can and reaching out to other centres across North America. They are not too optimistic.

I hate this so much! I hate seeing him like this! I NEED him to get better!
PLEASE PLEASE PLEASE!!!!!!

Thursday, September 30, 2010

A Tough Day (with pics)

We arrived at the hospital this morning and went to see Brandon with his doctors (not the kids). They asked him to stick out his tongue...no response....no comprehension of what they wanted, just a bland stare back at the Dr. Then the Dr stuck out his tongue and Brandon could copy him. They asked him to move his right leg - no movement. Move his left leg - nothing. He could not speak, and when he did he just repeated the same word over and over. I had to leave the room.
Then we met with the Drs - no change - still has liver and kidney issues, not sure what is going on with his brain but suspect the virus is still there. Brandon's brother asked the tough questions - we heard the tough answers. FUCK! Timeline? No idea. FUCK!

Now it was time to take in the kids (who were waiting downstairs with my parents). Brandon's amazing nurse Liann got them special robes, blew up the rubber gloves like balloons (and colored them like bunny rabbits), and gave Dana a pink stethoscope (huge hit). So now, dressed as "doctors", they were ready to go see daddy.

Wow - what a beautiful scene - Brandon gave a huge smile when he saw them. We put the kids on the bed - Koby jumped straight into his arms and would not let go. Dana, a bit more timid, laid back but slowly cuddled up to daddy and touched his new soft hair. And Brandon hugged them, and kissed them, and squeezed them. And though he could not talk, his eyes glowed with love.

And I was smiling.
And I was miserable...heartbroken.
The thought creeps in - could these be the last moments? Are these the last pictures?

If g-d was watching he would know that Brandon belongs with us and needs to get back home to the kids. They need him and I need him. We are meant to be together as a family!

The rest of the day was tough. Brandon was not responsive and could not really speak, It's also tough to tell if he hears you because the eyes just stare ahead, no sign of comprehension. And there are moments when he gets so agitated and he tries to get out of the bed...which he can't.

At the end of the day he sat up and I helped him. He leaned towards me, put his arm around my shoulder and gave me a couple of sweet kisses. He looked at me and smiled. And I smiled back and told him I love him so much.

This fairytale story needs a happy ending. It's time for the good witch to appear and save the day. And allow the prince to return home.

PLEASE PLEASE PLEASE!!!!!!!!!!!!!!!
It needs to happen, it just has to!






Wednesday, September 29, 2010

The wrong words

Drs pulled us into a meeting today:

"If there is anyone that needs to see Brandon then they probably should come soon. Bring the kids tomorrow."

And what the fuck am I supposed to tell my 2-year old and 4 year-old? What the fuck am I supposed to say?