Thursday, April 28, 2016

Remembering Prince

Since Prince’s passing, I’ve been thinking a lot about him and basically consuming every obituary/think piece there has been. I don’t know why. Maybe it is to try and soak up all that there is in the void that his passing has left.

There is one thing about Prince that I’ve been finding out that I never knew or possible forgotten if I had ever found out about it; Prince had and lost a child. Every time this comes up, it feels like a footnote in everything I’ve read, taking a back seat to his musical genius or to his artistic legacy. It’s barely a blip on our collective radar screens.

I get why, or at least I think I get why. Nobody wants to dwell on what it means to be a parent that’s lost a child. And to be fair, it’s not all that he was. To the public he was all those other things first. But, and I’m guessing here, but it’s a guess built from my own experience, he would prefer to be thought of a father first, a grieving father second (maybe, but maybe not), and then all those other things happened to be pleasant white noise.

There’s a reason many an obit reads loving father, adoring husband, blah, blah, blah, because that’s usually the order of priority. The love we gave our kids is what should take the first prize.

Speaking as a mother who has also lost a child, the title of grieving parent is not something to be taken lightly. It’s something that I don’t want the collective we to pass over quickly, in obit or memorial form. No it’s not all I want to be known for. I'm a mother, a wife, a writer, a creative writer, a person deeply passionate about disability rights, beader, the list goes on. But I also don’t want it to be a footnote in my life when the final word is set to paper. Because Ukiah was certainly not a footnote in my life. He was so much more. He could be the central thesis, the theme on which the whole book hinges. That’s how much he shaped my life.

So I wonder what Prince would make of all this. It seems to me that this was all kept so close to the vest or else I would’ve been more aware of it. And anyone who has lost a child is certainly allowed to do whatever they want in the wake of such things. If Prince decided to keep that loss quiet, that was his choice and I respect it.

But when these things come to light posthumously, I wish such knowledge would be given the respect and width and breadth of appreciation such a thing is due. Prince was a father that lost deeply and lost greatly and among the many other things he was to each and all of us he was this thing too and he should be loved and respected deeper and more greatly because of this.

Prince, you’ve meant a lot to me throughout the years, but you mean so much more to me now knowing how deeply you have loved and how deeply you have lost. Rest in Peace and Rest in Power, but most importantly now you can rest with your child. 

Wednesday, April 06, 2016


I can’t stop petting it. I keep stroking a leg or rubbing an ear, squeezing it closer into my body as I do. I know that a grown woman holding and patting a teddy bear must be pretty strange. But I don’t care. I know I could have placed the teddy bear on the floorboard of the car or sat it next to my daughter for the car ride home. I know having it on my lap makes little to no sense and yet I keep it there, petting it, hugging it tighter into my body as I do. Because this bear has suddenly become everything. Because this bear has given me just a little semblance of something I’ve missed horribly; Ukiah.

Since Ukiah’s passing, one thing that I missed terribly was the weight of him on my lap. I use to joke that I have phantom lap pains because my chest, the place where his head would lay as he slept so many nights on the couch, would ache for no reason. All I’ve wanted/needed was to put that familiar weight back on my lap again.

My daughter’s weight, although similar is a weight all her own. I’ve never compared the two. Nor has Loralei’s weight replaced Ukiah’s in my mind. They are both separate but equal. When Loralei sits in my lap, she’s not taking his place, she’s taking her own rightful place there. But that doesn’t mean I don’t miss the place he use to take. I still miss it terribly.

George Mark House was expecting us. I’d called earlier that day and told them we were coming. I’d spoken to one of my favorite people there at the house that morning. I wasn’t expecting that the metaphorical red carpet would be rolled out for our arrival but it certainly seemed that way. My daughter wasn’t feeling well, and everyone was bending over backwards to please her, because that’s how they are.

They offered her juice boxes and cookies and tried to do anything to make her smile. It didn’t work but that didn’t keep them from trying. Everyone was all warm smiles and even warmer hugs. This never surprises me. Ken Sommer, the director at George Mark even took time out of his busy schedule to come talk to me personally. He said something that I’ve heard over and over again at George Mark but that never ceases to surprise me when I’m there. “It’s your home.” It was said with a shrug, like it was the most obvious thing in the world.

And it is my home. There’s a sort of peace there, a comfort in looking around. A smile crosses my face when I spy one of the eight mural-painted patient rooms. When I’m there by myself, I walk the halls. It’s the same ritual I perform at my Aunt Clare’s house. I have to see all the places that have filled me with comfort and love.

Today I settle for seeing some of the people I love. There are the two familiar faces in the front office along with Ken’s. At the nurse's station There’s the nurse I’d spoken with earlier that day. And she's soon joined by one other. She’s the one who asked the question.

“Do you want a bear?” I’m a little confused at first and then she explains further that a mother who’d lost a child had gifted these bears to the house and they could hand them out to families who had also lost a child. I immediately get choked up at the idea, so I leave the decision up to my daughter. Even though she isn’t feeling well, she nods. We go get the bear.

They are called Comfort Cubs. Each one is a little different, some are squatter than others, each has a unique nose. Each one is weighted. This is not your normal stuffed bear. This is like a brick in a purse. If you carry it around, you are doing so with conviction. I sit the one my daughter had picked on my lap and I immediately begin to cry.

It’s the weight of it. It’s his weight. It’s back on my lap again and it makes me feel…. I’m not sure how it makes me feel. It makes me feel so many things at once. I hold this bear in my lap and it’s like he’s there with me again. I held the bear on one leg and my daughter on the other and it felt like I had them both and that was everything.

I try to put words to my feelings and emotions, but they just get jumbled in my throat. The nice woman just grabs a Kleenex box and puts it in front of me. I don’t have to say anything. Those things I’ve been leaving unsaid are still being heard by those around me. That in and of itself is powerful enough.

I find my husband by the fountain up on the hill by the chapel. He’s already found Ukiah’s rock. We sit up on the park bench outside the chapel and I hold the bear. My husband said quietly. “This is a good thing. You’ve been wanting something like this.” It gets quiet again. Things I should be saying aren’t being said and it really doesn’t matter if they will be.

On the way home, as I’m clutching the bear, I want to tell him how important this is, and at the same time I want to diminish its importance. I want to brush off the fact that I’m clutching on to this bear and patting it lovingly. But at the same time I want to sing the praises of having this bear in the first place. Instead, we make the way home in relative silence. 

This bear, this simple stuffed bear gave me a gift I never thought I’d get back, it gave me Ukiah’s weight. Whenever I need him to ground me again, to comfort me, he can take the form of this bear and I can feel him again. It is one of the things that destroyed me when I lost him and now I get to have it back.

Thank you to the mother who gifted those bears. Thank you to the wonderful person at George Mark House who wanted me to have one. Thank you to all the people at George Mark House who created this safe space so that I might have one. Just thank you.

Please help me in thanking this wonderful organization by donating to their #fundabed campaign today.

Thank you.

Tuesday, April 05, 2016

Things said, things not said

I had to answer the phone but I couldn’t keep my sobs in check.
“Hey,” came my husband’s voice over the line.
“Hi,” I said, through muffled sobs.
“What’s going on?” After almost two decades of togetherness there wasn’t much I could hide from him. He’d learned almost every nuance in my voice.
“I found the pee shirt.” What little I was trying to hold back came flooding out.
“Oh,” his voice was sympathetic and sad all at once, knowing exactly what I meant by the statement.
There are some items of Ukiah’s we hold as treasures, and some things we’ve just held. As I’ve mentioned before, the more time that has passed from his passing, the harder it is for me to get rid of anything related to him. But there are some things, like the invisible scars that are hiding and make themselves visible when I least expect it.
We’ve been staging the house recently because we are putting it on the market. This is in and of itself a bittersweet thing. The place is so full of memories we’ve made, memories we’ve made with him, memories that for better and for worse aren’t going to be in the new place, wherever that is.
I was doing a massive spring cleaning to stage the house and ran into things that I knew we still had but that I did not know we were hiding. Maybe my husband had been hiding them from me, or maybe I was hiding them from myself. I’m not sure. But I found them and they broke my heart all over again.
The Pee shirt was chief amongst those items. It was dubbed that because every time the hubbie wore it, Ukiah would inevitably soil it in some manner. The bodily fluids housed on the shirt are varied and numerous. Sorry to get gross on you, but it is the truth. The shirt itself is four-leaf clover green with a horse and rider screen-printed on it and some sparse wording that I don't remember. This shirt had seen war, not just of the bodily fluid variety. Swiss cheese ain’t got nothin’ on this shirt. It’s old and ratty and can’t be used for anything other than a rag and I will not get rid of it. You’ll have to pry it out of my cold dead hands. (Actually, I hope I get to go out that way, clutching something that reminds me of him, though probably not the pee shirt. I still have his stuffed animals. I’ll use one of those and one of the little munchkin’s while I’m at it. It would be nice to have the things I most treasure around me when I go out. And chocolate. Even if I’m not allowed to eat it, I want it close. But i'll save that for my will. Okay, digressing here, I’ll stop.).
I was clutching the pee shirt when he called. We both let the significance of it wash over us and were quiet for a while, neither of us knowing what to do with our feels. We switched tacks but we didn’t have to say much else. We knew he was there with us in that moment. We let him be. Sometimes the best things that are said are things that aren’t said at all.
Today is the anniversary of his passing, and there have already been several of those moments. Saying things and not saying things because not saying them is just as significant.
But right now I do have quite a few things to say. Mainly the big thing to say is that George Mark Children’s House, an organization near and dear to my heart and a charity that is well worth giving money to is having a fundraiser right now. Their current #fundabed  fundraiser is gaining traction right now on social media and on Indiegogo but it can still use all the help it can get.
The great thing about this fundraiser is you can select the exact amount, type of donation you want to give.  $5 buys a home-cooked meal. $25 buys a week’s worth of diapers and wipes. You can actually choose the type of impact you want your donation to make!
This is huge! It is so important you guys. And so worthy too.
Usually around this time of year, I make a plea regarding my Piggy Banks for Ukiah fundraiser, choosing to make this bittersweet time in our lives worth something by donating to George Mark House but this year I’ll be donating all my son’s piggy bank money (and if my daughter wants, some or all of her piggy bank money too) to the #fundabed campaign.
I would love to have enough in the piggie bank to buy an end of life suite. To be able to give a family the chance to use the same facilities my family and I were able to use when my son was there… to give that gift…. There are no words. None. I’m crying while writing this right now. I can’t even explain.
But with your help? Well, the sky’s the limit isn’t it?
I’m not sure if the Indiegogo fundraiser has the capabilities to let us pool our money for an item, but how great would it be to be able to give them enough to fund a day of care for a patient, or two. And real talk, as someone who as used their bereavement support services, if we could somehow band together to fund the bereavement support gift? I would be beyond the moon indebted to you to make this happen.
Right now, I don’t’ have much in the way of gifts or freebies to hand out to make your donation worth it, except what I’ve done in the past which is to lend my ever so humble blog to you for donating or spreading the word.
If you have any suggestions or ideas for pooling our funds/resources I’d love to hear it.