Celebration for Hunter

Saturday was a celebration for Hunter. When Hunter passed away last month, I couldn’t write about it. I was too upset. And it’s not my story to tell. His mother Lenore has written about their saga so well on her blog, www.healinghunter.com where she continues to post about their life since Hunter was taken by cancer.

I was really touched to be one of the people asked to help put together something to celebrate Hunter’s life. He was a gutsy little kid. His mom didn’t want it to be a memorial, but like the Dr Seuss quote on the program, to “be happy that it happened.” Fortunately she is good friends with a couple of party planners who really did the heavy lifting. You understand, that because of Hunter’s protracted illness his parents are financially wiped. So, their friends needed to pull together to make this all happen. And we were happy to do so. It’s such a little thing compared to what they have gone through and continue to go through. Mark and I contributed food for 50 from The Point, and I brought two dozen balloons in red and silver. Colors of Lightning McQueen, Hunter’s favorite.

I won’t lie. I was dreading it. I was worn down by a week where I worked more than usual. I was pooped, and Rex has been waking up more than usual. Then my dad went into the hospital. So, I felt emotionally and physically fried.

It may sound strange, but the gathering energized me. Hunter’s spirit was there and embraced by all. I arrived at a lovely private home where a dear couple who didn’t even know Lenore and Zen (they are friends of friends) had offered to host the event. The worst had already happened; Hunter died. To see that his parents were even able to function is a cause for celebration as far as I’m concerned. The home was lovely;, it was a breezy, sunny day. I wore my Iron Hunter shirt and approached this as a house party, not a memorial, which is what Lenore wanted. Her friends, most of whom I didn’t know, were all getting things ready, and they helped me lay out the food. A couple of people came up to me and said they had read my posts or seen the Momversation I had done with Heather about what to say to a grieving parent and that they appreciated them. That was very nice. I recognized them by posts of theirs on Lenore’s facebook page. We all had in common that we had been cheering Hunter on, and now wanted to do that for his parents.

My friend Molly showed up and helped me tie the balloons to the white folding chairs in the backyard.  I wasn’t sure where they were suppose to go, and I didn’t want to mess up. I was a little nervous to do the wrong thing. There were big beautiful pictures of Hunter. And videos of Hunter played in one room. People would silently walk in and gaze at him for while thinking of him and what might have been.

Molly, her husband, and I sat down as we were told things were going to begin. She and I decided we needed a drink. I ran to the table and poured us some red wine. I’m not going to lie. I drank about three glasses of red wine while I was there and didn’t feel it at all.

There was a makeshift stage, and the program alternated between songs (two incredible gals took turns singing lovely songs) and eulogies. Some very sweet words by friends. Because we sensed how hard it was for them to speak, we applauded for everyone, and the applause was for Hunter. A balloon kept being blown down by the wind and landing in Lenore’s hair in front of us, I froze, “yikes. ”  Molly’s husband held it back. Lenore had wanted me to bring the balloons, but I think I placed them badly.

Then his parents got up. Zen said, “You can pop the balloons.” I guess they had been getting other people’s hair as well. Oh crap, well, at least it punctured the sadness for a second.

Lenore cried and talked about how much she missed him.  What more she said, I can’t even say with detail, partly because I think anyone can imagine what a mother who has lost her child would say and how she would act. And partly because I was crying myself… as was everyone. At one point I realized if I was alone I would have been heaving, crying the way you do when you are child. I thought, “I’m looking at a woman who has lost her child.” Unreal.  She said that every one’s support had helped them.

Then Hunter’s dad, Zen, spoke. He was calmer and thanked the doctors and nurses who had tried to help. He thanked all who had given their “hard-earned money” because they really needed it in order to help Hunter. Family and friends who had been at the hospital.  As they stood up speaking of their grief and their gratitude, I thought how incredibly brave they are. And lastly, as his voice cracked, he thanked Hunter for being his son. Then they took a few balloons (not the troublesome ones I had brought) that said Hunter on them and had pictures of cars. Lenore said she wanted Hunter to have them. She kissed them, and they released them into the air. We applauded again for Hunter as his mother wept.

Zen talked about what people learned from Hunter, “Even it’s just to hug your kid a little tighter.” That is very true. I have learned from the three of them. Hunter’s calmness and bravery going through so much in such a short life. And the humility and graciousness his parents showed. I was struck today thinking, “They’ve handled this with class.”

Molly said to her husband afterward, “I know I would have tried to make this your fault.” We marveled at their equanimity because we know our own shortcomings that would lead us to lash out at our spouses in times of duress and feel justified because it’s a difficult time. Now, I’m not a fly on the wall, but when I visited them in the hospital, Lenore and Zen were always so kind to each other. It struck me as not the norm. And today Zen said that he was more in love with her than ever and that most people would have “gone crazy,” but his wife was strong.

Now, here is the good news. Lenore is pregnant. She is 6 months pregnant with a boy. And there is no replacing Hunter, and the loss will always be felt, but I’m glad they will have a place to put their considerable love. I pray that this child is healthy. They can’t be asked to go through that again.

One of the people who spoke so well at the gathering was their friend Matt Nolan, and this one line stayed with me. I was quoting it to my mom and Mark when I got home. “They say when two people that love each other have a baby, they are, in fact, reborn themselves. May the imminent arrival of Hunter’s baby brother be another rebirth, and may Hunter’s fighting, loving, generous spirit fill the heart of his little brother to set Lenore and Zen’s spirit on the path to healing.” Amen to that.

And isn’t that what makes parenthood so special? That we are reborn with our children. Seeing life in a new way or in a way long buried by years and the hardness of life. A rekindling. Our hearts open wider than they’ve ever been.

Send them good thoughts.

Cord Blood

Every time I would go to a prenatal checkup I saw the brochure to bank cord blood. Mark and I talked about it and read about it. But ultimately we didn’t think it made sense. If your cells had gone haywire, why would you need your own same haywire cells? You would want someone else’s.  So, why pay for it for years and years? read once where it said that we should all just collectively bank our cord blood for whoever would need it.  Then I did what I so often do. Forgot about it.

Now, a friend just sent me to Be the Match and there was a whole thing about donating your baby’s cord blood in order to save lives. In light of Hunter’s death, I’m more aware of the need for this. Hunter did get a bone marrow transplant, but maybe some other child could be saved by cord blood. If you are expecting, check it out. I wish I had.

Momversation:What to Say to Parents who Have Lost a Child

Monday night at 11:25pm Hunter Zen Thawley passed away in the loving arms of his parents. If there is a super something that makes these calls, I can tell it that a mistake has been made. His parents wanted him to stay. This was a strong boy who endured so much and still had the most adorable giggle a little boy could have. He was days away from being 3 and half.

This is the edited version of the long video that I accidentally posted the other day. Heather Spohr was a real champ here. She was candid and honest about her own experiences as a mother who lost a child. I so appreciate her doing that. When I asked this question of Heather, Hunter was still alive. And even though his parents were told he would not survive I still had some magical thinking that there would be an 11th hour save.

The deep pain that my friends, Hunter’s parent’s, are now going through is beyond measure. I wish that I could lift some of that pain off of them. I’m glad they know that in his short life Hunter did not live, laugh, and suffer in obscurity. His tenacity, and the love of his parents, has inspired  a lot of people. He was braver than I would have been, than most would be. By talking to Heather I hoped to maybe figure out someway to offer comfort to my friends and others who have lost a child or at the very least not to make their suffering any greater by doing or saying the wrong thing.

I will never forget you Iron Hunter.  I promise.

Iron Hunter

I was shopping today. I had just left seeing my dad in assisted living. He was recently discharged from the hospital, and he is not doing well. He is a shadow of his former self. I was a little down and waiting for a mediocre lavash sandwich at a deli counter. As I waited I logged on to Facebook. I saw something that pushed my dad’s decline aside. My friend Lenore had posted, “Our little love is dying.” I have told you before about Hunter.

A boot was kicked in my gut. No. No. I walked to the nearest chair and bawled. I called my husband. I sent her a message. I didn’t know how I would get home.

I’m a friend who lives far away. Yet, I can think of nothing else and everything else has been pushed and twisted in my mind, and I have not been in the trenches. I’m not his family. If I feel like this, what are his parents going through? The level of heartache boggles the mind.

There are NO words to comfort Hunter’s parents. This is the worst thing imaginable.

I know, children die all over the world. They died in Haiti. They die in Africa. They die in America. And the suffering they and their families go through is awful. To focus on a dear child that I know doesn’t take anything away from what others have suffered. But for me this is not an abstract number. This is a beautiful boy that I saw lying in a hospital bed before he could talk. This is a boy whose name I knew when he was still being carried inside his mother before his birth. Who calmly submitted to the upside-down life he lived in. These are parents who showed great humility and courage as they have fought for their son’s life.

Hunter has been so brave. He has gone through so much. Staying in hospitals for months. Living in a tiny hospital room. Countless needles, marrow surgery, chemo, you name it.  And with the best parents there for him every step of the way. I just saw a video of him a few days ago. He was laughing in his father’s arms. There is NO GREATER sound then a child’s laugh. Nothing that connects us to life and joy more.

I thought, this laugh cannot be silenced.  There must be some mistake about his diagnosis. A miracle will present itself. Right?

I’m not that eloquent. But even in the face of her worst nightmare Hunter’s mom is. If you read her blog you will see that. I’m just profoundly sad, and I didn’t know what else to do but write about it.

My dad use to say, “The sign of a really dull person is when you ask them how they are doing, they tell you.”

I’m pretty dull. I made it to the check out and the cashier said, “Are you okay?”

“No, I just got some really bad news.”

I can’t be light. Hunter is supposed to live.

Healing Hunter Part 2

I had linked before to my friend’s blog about her journey fighting with her son and husband to save her young son’s life. I have just read her latest entry: “Living life on the edge of fear.”

It’s not good.

I am stunned. I am so sad for them. I find it hard to believe in God when I see a lovely little boy who has fought most of his life, and now his mama is told they are out of chances. I don’t know what to say to them. I think this is such an immense sorrow there is nothing adequate.

I am so sorry to any parent that has gone through a child’s loss. My friend writes beautifully, even now.