Monday, May 19, 2014

Living on a Love and a Prayer and Letting Go

I stood in walmart, it was almost Kiera's birthday, she was having friends over in 2 days and I needed to pick up a few things. Grandma had been in hospice and the time was near. My phone rang, it was my aunt. My heart dropped. I answered- Is this THE call?

My aunt laughed- oh no- not yet, she's hanging on. Is it a bad time?

Nah I'm just in walmart.

Maybe I should call back, or you call me back, but I need you to do something for me.

My day gets crazier from here- what can I do? I'm thinking- not much from a zillion miles away.

Could you say goodbye to grandma?

And like that- standing in walmart- life gets slammed back into perspective. I weave my way through men's clothes and head to men's shoes- no one ever hangs out there.  I take a deep breath, Kath holds the phone up to grandma and I say my goodbyes. I ask her to hug Bob and dad for me. I tell her we are all going to be fine. It's Ok.  And I am instantly transported to 20 years ago- sitting in hospice, telling dad the same things. Hug Bob for me. We're going to be fine. It's Ok to go. I look up and 2 guys looking at work boots look sympathetic and head for the other aisle. I have no right or claim to privacy there in the men's shoe department, but there are still good people who offer it.

My aunt and I chat and she promises to send me a card grandma wrote, the last card she wrote. She tells me how grandma wanted a religious card and painstakingly wrote out a message. I could tell this card meant as much to my aunt and grandma as it would to me. She apologized that Kiera's birthday cards would be late. I knew there was no shortage of love and prayers. By Kiera's birthday she had let go and was gone.  But we carry on.

I started collecting pictures from family. I got down a couple of boxes from my closet. I searched for pictures I knew I had, but couldn't find. In the process I found things I didn't remember I had.  I found the programs for my brother's, my dad's and my cousin's funerals. Each stuffed with tiny prayer cards. A drawing my cousin made for me on the way to my graduation. The sadness and pain of those weeks of loss very overwhelming. The timeline was this- the year 1994. My cousin Eric, after over four years of battling brain tumors died on April 18, on his sister's birthday.  There were times I wondered in the grand design- how something like that could happen. How unfair it was to end the pain but begin the loss on her birthday. Then I realized maybe it had to be that way, the only way to go on is to pair the sadness with immense happiness. Shannon's birthday would never ever be the same, but it also may have been the very thing that got us through the unbearable sadness of losing Eric. And each year we are reminded of how much it hurts that he is gone, we remember it is her birthday and for that we are so grateful. I found cards and letters from grandma- signed Love and Prayers.

We traveled from Colorado to Toledo for Eric's funeral. I was a senior in high school. He was just a child.  The last months are a blur. We returned home and one month later, May 18th my dad died. That same week, May 22nd marked the 3rd anniversary of my brother's death. Yet the next day is my dad's birthday. Again a strange pair of bittersweet. May is a time of great sadness for us. A time for a lot of love and prayers.

My Facebook reminds me over and over- 20 year reunion- are you coming? I don't recognize half the faces, I keep in touch with few. A few more now there is a reunion. Sometimes the loneliest place is being surrounded by others. In my mind- it's been 20 years that Eric's been gone. It's been 20 years since dad's been gone. More than that since I've seen Bob. The week after dad died, I went to graduation.  I spent weeks in the beginning of May trying to figure out how to get dad there comfortably- were there handicap spots, would mom and I be able to get him to the wheelchair, would we be able to get him in and out of the car. He was larger than life- even sick- he was a force to be reckoned with. He wouldn't have wanted me to worry about him. He wouldn't have wanted to be pushed around. It wasn't an issue in the end- I floated in a sea of graduates clinging to the emptiness of loss that was my graduation present.

My mom sends pictures- it's all I can do right now honey, it's just too hard.

My aunt sends pictures- I don't know how much I can do, I can't stop crying.

My uncle sends pictures- we're trying to set a date for the funeral, Jen- grandma would understand.

My cousin and her husband scan countless photos and sends them to me.

I spent weeks arranging and rearranging - trying to find the balance. Trying to make sure it was a meaningful representation of her life while representing how much she meant to others, how much she meant to me. Missing her the whole time, one of the last remaining links to my dad- one of the last pieces of him.  As I rearranged, going through chemo again, feeling worn down even further I started having anxiety about making the trip to Ohio. I wanted more than anything to be with my family, to say goodbye to my grandma but the thought of a day on planes then turning around and doing it again after a day or two really started scaring me. The germs- the stress- the energy needed- I didn't have to spare. If dad was here, he would go. But he is not here. He hasn't been for 20 years. Phil talked me down off a ledge of despair. He held me when the weight of not being healthy enough to travel to the east coast descended on me.  Then we picked up and carried on.  He gets angry sometimes because I don't like to show the hard times. I hate being emotional in public and I can rarely go a couple hours these days without being emotional. The toll is on him- because I spackle on the brave face and he has to be there to fill in the cracks as it breaks away. Two hours of being out requires an afternoon of resting. I thought of my Grandma and what she wanted. She never wanted anyone to fuss. She would never want to be the cause of any worry. She would want me to take care of me and the kids. To be able to take care of the kids means to take care of me.

I returned home from chemo and Phil grabbed the mail. He hands me a card, from Helen T. Connolly, my grandma. It's the card. This is the last card I'll ever get from her. It was perfect. It was touching. It did not hold the answers to the universe- but it holds treasure. It is something I will treasure for the rest of my life.  I would never feel Ok about missing her funeral, but this helped me feel better in general. There in the card- signed Love and Prayers.  I call my aunt to tell her thank you, she reads me clippings over the phone that meant so much to grandma. I text my mom, we share memories. I text my cousins, they return with memories. The book takes shape.

I finish the book and ship one to my uncle express, with love and a prayer that it makes it to the funeral. The other finds it's way to me. I sit and go through it with the kids. I miss my family and the happy times in those photos so much.  I feel the overwhelming sadness of not being there to celebrate her life and to remember her as a family, together.  I decide we need one final gesture, for me, for the kids, to say goodbye. Phil suggests Sunday, the 18th. And I can't think of a more fitting time. On the 20th anniversary of my dad's death, the night before my grandma's funeral- we remembered them and celebrated their lives. Pairing the happy and the sad. We sat around the dinner table and made toasts in their honor. We shared memories of grandma- which included using her magnifying glasses to set fire to several things and how if she liked you a bunch she would give you a big hug and you could hear her hearing aids whistle and how she was always, always sending love and prayers. So it was an appropriate tribute to let our inner pyromaniacs fly in her honor. Then we went to the beach and with some of the lanterns left over from Bella's Tangled birthday- we sent love and prayers into the sky.

Forever in my memory- will be a smile from Phil as he grilled dinner- do you smell that?  Not the meat- the sewage plant. Yes- well I'm hungry now- sewage plant smell. It means the winds died down. Its a good night for lanterns. The clinking of glasses as we shared memories.  Lily dancing around us as the wind started up and we were pelted with rain briefly. Lily is not calm she yelled- Lily is not calm. Each child taking turns holding the lantern when the wind died down and watching the first attempt crash and fizzle in the ocean, before it ever caught flight. The reflection off the water worth the untimely demise. Our friends there to hold hands and lanterns and take pictures- helping us let go. Not letting people go or memories go- but letting a piece of the grief GO.

And we start again with another lantern, another memory, another loss. Just like that, the winds died again. The lantern filled with a warm yellow light, drifting up to the stars. Taking with it a piece of grief,  a symbol of carrying on. And the children running down the beach after it yelling goodbye and I love you grandma and me hoping that in that moment our love and prayers were received.  Pairing the happy and the sad.

Friday, May 16, 2014


Lily woke up Tuesday feeling yucky.  But to be honest she feels yucky a lot. It makes me feel worse knowing she feels yucky when I feel yucky. I felt pretty gross last week, but was starting to get over the hump. Tuesdays I normally have physical therapy, which has actually made a pretty big difference in a lot of things. I remember my mom being pretty stunned that I wasn't automatically referred to PT after my surgery. When you go to a military hospital, you see missing limbs, you see burns, you see lots of tough situations. Due to the budget- many services are at a premium and dependents get bumped down on the priority list. But when you see someone who has lost part of themselves in defense of this country- you tend to keep to yourself about the little ache in your arm where you have a little divot- after all you still have your arm. 

PT was referred after my genetic counselor went to a conference and this clinic was there offering massage. There are many conditions that massage help and I have many friends who use it regularly. For insurance purposes it is called manual manipulation and definitely does not have the bells and whistles of a spa visit- but I have long since fallen out of love with a lot of bells and whistles in favor of good old fashioned function and peace. Not only does massage help aches and pains, it help loosen up scar tissue and drain lymph fluid. The whole process decreases stress emotionally and physically- which is excellent for healing. 

As a bonus- the Clinic also offers acupuncture with visits. I have been traveling an hour across the island and paying out of pocket.  A true test of whether or not you need something and if it's working- is willingness to pay for it yourself. Having PT and acupuncture closer meant nothing but good things for me. When my PT visits ran out- we had to see if insurance would renew. I told them flat out- regardless I would keep my appointments because it was helping. There aren't a lot of straight answers with cancer and cancer treatment. One of my big beliefs is to do what works. The routine we put in place is working- I don't want to mess with it. I actually get a little panicked when I have to switch my appointments. Sure I can do many of the stretches at home, and Phil is a pretty good stand in masseuse- but acupuncture is something I'm gonna let the professionals do. 

So the squirt complaining of aches Tuesday, I worried that she was sick but many times she is fine. I sent her off to school with a slightly runny nose. As I was getting ready for Physical therapy- I get the call from school- Lily is full blown congested and can't possibly carry on with her day. I sigh and get ready to reschedule therapy. For Phil, who is sitting at the table doing bills- it's yet another night week at work- which just makes for long days and nights in our house. He smiles, senses the tension and offers to go get monkey. And he wants me to go to physical therapy- he sees how much I look forward to it and how much it helps. I am so lucky to have him. I have so many friends whose husbands would scoot of to work and not look back- but that is the benefit of cancer I guess- you get a better perspective on what's important. 

I get back from PT and Lily looks pretty punky. I feel bad- I want to snuggle with her- but kinda terrified of the petri dish aspect of her composition right now.  We settle for sitting side by side, Catching up on a season's worth of Once Upon a Time episodes. I remember a sickness a couple years ago where Lily and I started watching Once. And here we were again, a kind of tradition. Tuesday became wednesday- she was even stuffier.  I offered Starbucks to test the health waters- she couldn't taste anything- didn't feel like eating.  Her teacher called to check in. Maybe tomorrow. Wednesday became Thursday- I offered Aloha salads- something healthy but a bit of a trip. By the time we got there she was asking to just go home.  She don't have enough energy for voice lessons. Maybe tomorrow- there's a celebration at school. Thursday became Friday. Today we sat and looked through pictures. While collecting photos for my grandma's funeral book- I realized what a sad state of organization my photos were in.  I also ran across some gems. Lily and I seemed to be an appropriate pair energetically- for looking through pictures.  Her teacher calls, worried. I've spent more time than I care to recount- making sure everyone at school understands the seriousness of her condition and I've always promised that if she is sick- I'll keep her home. The Petri Dish that is Bella has the same cold and is perfectly fine at school- with the rest of the pertri dishes. She didn't even ask to stay home and would rather play. Phil complained of symptoms briefly- but like always- just is not a complainer- I knew he felt bad when he climbed into bed at 9:30. 

This week reminds me of years past- when I, the healthy child would get overwhelmed with school and life and the pressures of having ones you love dying from cancer. Mom would say- today seems like a good day to take a mental health day. We would go to Estes Park, or just lunch, or just be. Sometimes when you feel loss- the worst place in the world is to be surrounded by people who don't understand. Lily could probably go to school and I would worry and carry around my phone, waiting for the call. Or we could take it easy and let our bodies heal. Sometimes the best therapy is avoiding therapy at all- taking care of things before they get bad- before they hurt. It reminds me of the normallness of colds and viruses- wasn't I just complaining I needed a little more normal in my life? Hopefully it won't become a habit and hopefully I am giving her what she needs. Because even though I hate her being sick and even though I feel like I should be doing more, sometimes just hanging with Lily is the perfect therapy. 

Saturday, May 10, 2014

My Mom

I don't remember the last Mother's Day I spent with my mom. It's been way too many years. Somewhere in the world of being a mom, being a daughter became second fiddle.  There are so many times I wish I could do more for my mom.  She is the first to tell me, I gotta take care of the kids and myself first. Because as a mom, that's what you do, you make sure your kids are ok first.

Mother-daughter relationships are complex and ours is no different. It has morphed over the years from complacent to volatile to quiet understanding. It's always backed by love. My mom, being my mom was the best model for mothering.  I am the person, the woman, the mother I am because of her. She is human. She makes mistakes. She loves. She hurts. She creates. She picks up pieces and moves on, over and over and over. She is a survivor. She is absolutely crazy. But each passing year, I understand her crazy so much more. I am to her crazy as my kids are to mine, it's all part of the crazy mothering package.

Being a mom Is swooping in and saving the day when squirt thinks they can handle it but is drowning. It is also letting them flounder the precise amount required for them to gain an appreciation for their limitations. Being a mom is seeing your charms and your flaws flaunted in front of you daily, sometimes hourly. Being a mom is the most helpless and the most empowering position ever.  Being a mom means your heart, soul and entire being are wandering around outside of your body.  Most days they are doing it wrong which makes you feel like you are mothering wrong. Yet every now and again, there are the glimpses of the amazing beings they are, the good they can accomplish shines through and in those moments you know you did something very right. In those moments I realize how many things my mom did right and I am thankful.

In times when film was expensive and memories were sharp, she 'd tell me to take pictures in my head. And we would stop and have a moment and take our pictures in our minds. But also in those moments were sharing something just for  us. Just being. Appreciating. We had nothing to take back and share but our memories.  The pictures in my mind sit there waiting for their stories to be told. They are there because of my mom.

Over the years things have been broken and lost. Mom would say they are just things, things can be replaced, you can not be. She taught me through this the true value of right, wrong, friendship and love. I was not careless with objects because they could be replaced, I placed them on a scale of worthiness. I remember pictures with burnt edges, stories of wedding gifts lost in a fire in my parents first year together, the items salvaged just what did not burn. The experience of loss framing her mindset and lessons passed to me.

There were years of stress and self inflicted pressure to be the best. Many tearful nights of sitting at the kitchen table with mom making lists. To this day she asks me - did you make a list? When Lily got sick, we went over the list of pros and cons of chemo. When I got sick we revisited them. As she gets older, I see these lists all around her. Lists for memory instead of necessity. I have books of lists,shopping lists,mental lists of dreams. But the lists that matter are the lists we keep and most of those she made with me.

My mom taught me to trust my gut. To be patient and hurry up. She taught me there is always more to people than what you see. You have to be just be who you are and sometime just BE. I can read because of her patience and I write because of her encouragement. She still calls when she just has a feeling, and usually that feeling is right. The feeling is that your child needs you and I've learned to trust that feeling too. Contrary to years of protest, my mother was right about so many things. Hardly a day goes by that I don't hear her leaping from my mouth.

Over the years I've learned lessons she tried to teach me when I was young. When I was too busy to stop and truly listen, too busy having fun. But I am grateful now for the lessons and the experiences learning them taught. Because now I know when my kids don't listen, it isn't all for naught. I turned out ok and they will too, because I know I love them as much as she loves me. I will pass along all of the lessons and someday they will see.

So on this Mother's Day, even though I cannot be with my mom I know I am where I need to be and she understands. I hope she knows that on this Mother's Day I understand a little bit more and appreciate her a whole lot. I love you mom!

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)