A Day at Sea

The thought of cremation made me cringe.  ...all the thoughts that go with it, who picks up the body, where do they take it, what happens next?

I have to say all my questions, concerns and worries were answered by The Omega Society.  They were wonderful to work with, they answered all my dumb questions and helped make the arrangements...Every step was covered and nothing was left to question.

We decided on cremation that day, in the hospital...moments after we were told my mother had passed away.  OMG!  My mind is still having trouble believing she is gone...but to talk about Funerals, Arrangements or Cremation!?  My Aunt Val called my Aunt Char (her husband was my mom's brother - he passed away from VHL too). and asked her about Uncle Bill's Ceremony.  His ashes were scattered at sea.  I wanted my mother to be with her brother.  She loved the ocean.

I'm not sure what we'd have done without my Aunt Val.  I wouldn't have known which steps to take or when.  She took our hand and led us through.  My youngest daughter made all the calls the next day and we met at the hospital to sign the final paperwork.  We visited the church...a church that my daughter's belonged to and who had agreed to do the service for free.

We cried as we thanked them. Abundant Living Family Church ~ I can not thank them enough. They were ever so patient as we gathered in their lobby and went on and on about how we would like the service to go. They explained the service and we decided on a slideshow....again, I have to remind you, that they were very patient. The assistant pastor Karen had another meeting to go to...but she held our hands and explained what would happen at the memorial. Pastor Coffey came and we held hands and prayed.

The Omega Society picked up our mother, cremated her, and arranged for the yacht "White Light" to pick up her cremains to be scattered sea.

On Saturday, (a beautiful, sunny day) August 21, 2010 at about 12:30pm...we scattered my mother's ashes at sea, off the coast of Newport Beach, in the bay.

The Captain read a poem and gave us each a single Red Rose. 


My niece, Tori helped the Captain gently open the box, and let the wind take her...take her to destinations unknown.  We tossed roses and lei's and dried flowers.  We cried...as we said our good-byes.

One of the lei's moved on top of the water and created a heart shape...I know my mother was finally free.

After circling several times in a Circle of Tribute...we headed back to the harbor.

It was a moving way to say good-bye...

A Phone Call Away

A funny thing happens when someone passes away...  I don't think your brain really comprehends the finality of it all.

Shortly after the Memorial Service...I picked up the phone to tell my mom that I had seen her two half sisters.  I dialed her number before realizing...

I spoke to a friend about this and she told me that she wrote a blog to her mom...she said it helped.  Maybe this blog will help our family too.

THE MEMORIAL SERVICE

My mom didn't belong to any particular church, but my daughters do.  They allowed us to have her service there.

We enlarged a photo of my mother with my little sister.  It was one of the nicer photos of my mom.  You see, it was hard to get a great shot, as she didn't always look at the camera.

The church printed programs...I added an insert with a collage of photos of my mom.  She was so beautiful.  The other side of the insert was a family tree.  One of my younger cousins went around the room, matching faces to photos.

There were a few photos, flowers, a guest book...I wasn't sure how many people would show up.  My mother's friends were older, some were blind also...we didn't know if they would be able to attend.

My mother's sister and brother were there.  Including her half sisters.  Her sister-in-law, Her children, grand children, great grand children, an aunt, cousin, neices and nephews and friends.

The pastors did a lovely job, speaking about a woman they'd never met.  My Aunts and my Uncle got up and said a few words...shared stories that made us smile.

I had written a few words and wanted to speak...but was so afraid that I wouldn't get the words out.  My husband said, he would finish for me...if that happened.


WHAT I SAID AT THE MEMORIAL ~

Hello, I am Suellen, Marianne’s oldest daughter. Thank you all for coming, it means a lot to my family.


When I first set out to write a few words about my mother, I thought: How do I sum up her life with just a few words. I’m finding this very difficult, as words are inadequate…but, I will try my best to put into words, who my mother was.

I’d like you take a moment and close your eyes. Imagine a world of darkness…imagine relying on your other senses: hearing, taste, touch, smell. Would you be frightened to walk out into the world? Cook? How about just walking around your home? Now, take a breath and open your eyes.

This was my mother’s world. Being blind wasn’t all that bad, my mother used to say. She’d tell us that her other senses had magnified. She’d have us close our eyes and navigate the room, or listen to the things most people never hear.

My mother lost her sight at 25 years old and she had three small kids. I remember my father taking me out onto the front porch, I was 5 years old. He said: Susie, your mom is losing her sight, she won’t be able to see, you have to be a big girl now, she is going to need our help. …and then he said OK, get ready Mom is driving you to school. What??? Imagine my confusion. So doing as I was told, I hopped into the car, Mom is in the drivers seat, I’m standing in the back, straddling that hump in the floorboard (we didn’t have seatbelt laws back then) my hands holding onto the back of the front seat as we back out of the drive way, she drives down the street, turns the corner…hits the curb and I about fainted. I didn’t know Mom had one good eye left. Unfortunately her depth perception was a little off. She didn’t drive very long after that.

When I turned 25 and had three kids of my own…I imagined what it must have been like raising three children. Not being able to see what they were doing or getting in to. It’s a frightening thought. You know how kids can be: driving off of the roof on your bike or jumping off with an umbrella, putting pennies in the light socket, breaking a wrist while roller skating, and cutting our own hair. Thankfully, Aunt Val fixed many a haircut gone wrong.

How about the time Steve and I, along with some neighbor kids decided to swing on the rope of the flag pole at Pomona Girls Catholic School. Yes, it was a lot of fun. We’d get on the fence, put our foot in the loop and swing by the classroom windows so that we could peer in…one day, the nuns, about 10 of them came running out two side doors and tried to corral us. We took off and jumped the fence and ran all the way home. We never looked back… We got home to find mom standing on the front porch, one hand on her hip, the other holding a cigarette, tapping her toe. We knew we were in trouble. But what we didn’t know was, that Valerie Pfleger hadn’t made it over the fence and she gave us up for a lollipop. Yes, that really happened.

My mother had a tough life but you’d have never known it…she made a lot of lemonade. She lost her sight and they told her that she had to learn Braille…so she learned Braille. She had to learn to cook again, so she did. She learned to use a cane and later got a guide dog, she took city buses on her own when she went to back to school. Imagine finding the bus stop, getting on the right bus, getting off at the right bus stop and navigating a college campus…she did.

Her fingers where like 10 tiny eyes. She had bionic ears. She knew who we were by our footfalls. When we were younger we’d try to sneak a couple of extra cookies…she’s say “Suellen”? I asked her how she knew it was me? Never mind “eyes in the back of her head” our mother had radar. We did what kids do…we waved our hands in front of her face and when we were in trouble we’d stick out our tongues…she knew. …and we’d “get it”.

She cooked many Thanksgiving and Christmas dinners. Those were times when we all gathered together in my mother’s tiny home and just be together. She loved listening to the kids open their gifts and squeal with delight. She’d sit in her chair and just listen to all the goings ons. Imagine a house full of people and everyone talking at once. It could get confusing for her at times. I liked to sit by her and describe what was going on. I’d do that while we watched TV too. My husband tells me to shhhh at the movies because I still do this. We had wonderful times.

My mother loved her grandchildren, you were her treasures, she loved her great grandchildren, you were the jewels in her treasure box. You were all the light of her life. She loved us kids too but when the grand kids and great grand kids came along…well, you know how that goes.

Shana, Neysi, Adam, Tori, Rolly, Tiana, Davonte, Tyler, Jalen and Kennedy…I’d like to read a poem for you:

READ POEM (See Below)

Grandma loved you all very very much.

Saturday, July 31st was our mom’s 71st birthday. She was surrounded by her children, grand children and great grand children. It was a good day. I think she had a good day.

My mother was our rock, the glue of our family. She handled adversity with dignity and grace. She always had a shoulder to lean on, for anyone who might need one, she always had the right words to say. She never said a bad word about anyone, you never heard her complained. She was not only kind and beautiful, she was a wonderful mother, grandmother and great grand mother…she was my hero, and we will all miss her dearly.

I love you mom.

I got through my speech...with a few tears and sniffles.  I think I made my mother proud.

My niece got up and said a few words...I was so proud of her. 

The pastor said he was moved and asked that he be allowed to call her Mom.  He said wonderful things that will give us peace...he prayed with us and then hugged us as we left the chapel.

It was a nice service.

We gathered later at my daughters home.  We shared memories with family and friends...we ate a meal that reminded us of when we were younger.

All of us being together would have made mom happy.  It was a beautiful day.

 CLOSE YOUR EYES - Poem

 

Grandma can’t be with you today

But close your eyes and think;

About all the wonderful memories you had,

And how she made you giggle when she’d wink.

She’ll be with you in the bedroom

Sitting quietly on your bed;

Just close your eyes and think of grandma,

Relive the sweet memories in your head.

She’ll be that star in the darkness,

Shining steady through and through;

You only have to watch it glow

To know She’s thinking of you.

She’ll be the music that you listen to,

She’ll be there in every song;

She’ll laugh with you and sing with you,

And comfort you when your day’s gone wrong.

She’ll be the wind that ruffles your hair,

She’ll be that warm embrace;

She’ll be the hand on your shoulder,

She’ll be the tender touch on your face.

She’ll be the moon as it dances

At night when everything is still;

for she has always loved you

and know she always will.

Though you may not always see her

As moments pass and nights turn into days;

Just close your eyes and think of her

She is never far away.

...and when I got home that evening.  I wanted to call mom and tell her all about the wonderful day we had.

I pick up the phone, thinking I'll dial and at least hear her voice on the answering machine.  I quietly put the phone back down.

I used to call my mom and we'd talk for hours...we'd do crossword puzzled over the phone or just gab.  ...I long for her sweet voice.

While my heart aches...and while I miss my mother, I know I must be strong for my children, her grand children and her great grand children.

VHL..."IT" lurks there, silently...waiting to rear it's ugly head.  Damed VHL!

Mom

My mother had been blind since 1964.  She learned braille and learned to cook again.  She took classes at the local college and love to read.  She would read books on tape.  She was always open for a crossword puzzle.

We'd always talk about the books she had read and I'd have to read it because she described them so wonderfully.  She would be up at all hours because she was always getting her days and nights mixed up.  So Shana, would call and they'd stay up late talking.  My mother and Shana shared a special bond.

My mother got Pneumonia in 2008 and was in the hospital for 3 weeks.  I asked her, since we were at the hospital already, if she wanted to get scanned.  She said: I've lived this long without knowing, I'd rather not know. So we didn't have her scanned.  She knew she had a Pheo but, her brother had his removed and "All Hell Broke Lose" is what she said.  So she didn't have hers removed...she was pretty good at calming herself down when she had panic attacks or heart palputations.

Upon returning home she needed physical therapy...her legs weren't working quite right, maybe from being in bed so long.  She did PT for 4-6 weeks and things started to get back to normal.

She got better...but then she started to fall.  We thought because she hadn't regained all her strength back.  She said she didn't know what happened, just that her legs gave out from beneath her.  She wasn't in pain, not dizzy...

She fell a couple more times so, we took her back to the doctor and they said she needed more physical therapy...my mom didn't want to do it.

She need a wheel chair to leave the house.  She seemed ok for a while.

Earlier this year, she caught another cold.  And then her memory started to fade.  The doctor said it was early dementia.  Within weeks, she started to deteriorate. 

Her 71st birthday was on July 31, 2010.  All her children, grand children and great grand children were there.  We had bbq and cupcakes.  My mom didn't feel like eating.  She had trouble opening her gifts and she didn't talk much.  I felt like she could understand but couldn't vocalize her thoughts.  We thought maybe she had suffered a mild stroke.

We took her to the ER the next day...they scanned her and found a brain tumor.  A very large brain tumor.  It had probably been there for years.  She didn't have dementia...the brain tumor had caused the falls, the slurred speech, the dementia...everything. OMG!!!

They rushed her to another hospital.  They said she had to have surgery to relieve pressure from the swelling that the tumor was causing.

I live about 100 miles away.  I packed my two grandaughters (who were visiting) into the car and raced to the hospital...she had been sedated, she looked as though she had to work very hard to breathe.  She was restrained...they said she was pulling at her IV's. (I don't think they realized that her fingers were her eyes...and she was probably just touching/looking).  I kissed her on the forehead and said "I love you Mom...I'll be right here when you come back"...

My mother passed away during the surgery.

We were devastated...we were expecting to meet her in recovery.  The doctors camed to tell us that she had "coded" and that they were trying to resucitate.  They said they had given her 12 units of blood.  This tumor was huge and highly vascular and probably had been there for a very long time.  She was about 5 hours into the surgery when her heart stopped.  They worked on her for 20 minutes, when they came to talk to us again...they were still trying but...   I begged them to let her go.

My oldest daughter ran to find my younger daughter...she had gone to the car.  As she came to the elevator, Shana and crumbled to the floor, praying...praying so hard.

Everyone was crying..."How could it be?"...she can't be gone, we were supposed to meet her in recovery.

After a while...we were all sitting in the waiting room...not knowing what to do.  In shock, muffled cries...

The hardest thing I've ever experienced is walking out of the hospital...leaving my mother behind.  Not yet comprehending...that she was gone.

She had "IT"...VHL, damned VHL!

Here I am, three weeks later...missing her terribly.  Writing a blog about VHL, my mother and me.  Hoping that maybe our story helps another patient in some small way.

Damned VHL!

A Daughter, Sister, Wife, Mother, Grand Mother and Great Grand Mother

My mom was amazing.  She lost her sight and had three small kids. 

We did what kids do...so imagine raising kids without your sight.  I tried to do  this when I had kids of my own...you can see when they are putting pennies in the light socket, or riding their bikes off the roof or painting the neigbors dog green.  Nevermind stuff like choking on a french fry, breaking a wrist, playing with matches...the possibilities are limitless.  It frightened me and all I had to do was open my eyes.

My mother needed to read,  so she learned braille, she need to learn how to cook again, she did.  She rode the bus and navigated the local college campus...on her own.  I can't imagine stepping foot outside, let alone riding a bus??

She did.  She cooked, she sewed, she rode the bus...then she got a Guide Dog and we were in heaven.  A dog!  We used to put the harness on Enid and she'd pull us on our roller skates.  So much fun, till she saw a cat and then the real adventure came!!!  ...so did scaped knees and elbows.

Home was were mom was and as we grew older and found homes of our own, there was nothing like cramming into my mom's tiny home and celebrating Christmas and Thanksgiving.  She'd make the dinner herself and then listen while her kids and grandkids opened their gifts.  This was her joy.

She always had a shoulder to lean on, she always had the just the right words to say.  She'd give you the shirt off her back...she was not only beautiful, she was kind and gracious, she was smart, creative, fun and amazing!!!

I can't believe she is gone.

My mother passed away on August 2, 2010

Knowing for Sure

After my mom lost her sight.  They ran more tests...genetic tests.  They tested others in the family and found out that her brother, my Uncle Bill had VHL too.

They were able to save Uncle Bill's vision by catching the Angiomas early.  Their treatments were done at UCLA's Jules Stein Institute.

They dialate your pupils, they numb your eye and you sit with your chin in a strap...just like when they check your vision.

They point a laser beam at the Angioma and "zap it".  The heat from the laser acutually cauterizes the Angioma.

It's important to get checked regularly because these Angiomas will more than likely continue to "pop up" throughout your lifetime.

...In The Beginning

The first time I heard it, I didn't really know what it meant.  VHL, Von Hippel-Lindau...sounds foreign, sounds strange, sounds scary.  Especially when it's something you have.

This is VHL in a nutshell:

Von Hippel-Lindau (VHL) is a genetic condition involving the abnormal growth of blood vessels in some parts of the body which are particularly rich in blood vessels. It is caused by a flaw in one gene, the VHL gene, on the short arm of chromosome 3, which regulates cell growth.

There is more to it...but we'll get into that a little later.
 
My mother found out she had VHL when she was 25 years old.  It was 1964.  She had been married about 9 years and had 3 small children.
 
I remember my dad taking me out onto the front porch and saying: "Susie, your mom is losing her sight. You're going to have to be a big girl and help out more.  Ok, get ready, mom is driving you to school".  What?  
 
I didn't know she had one good eye left.  Depth perception was an issue...on our way to school, she hit the curb and I thought we were all gonna die.  She didn't drive very long after that.
 
In 1964, we didn't know that much about VHL.  My family was told it was an eye disease.  Get your eyes checked every two years and if you don't have it by the time you are 20 yrs old, chances are you won't get it. 
 
Well...VHL isn't something you "get".  You either have it or you don't.  You can't catch it like a flu.
 
So we all got our eyes checked every two years.

I am not a doctor or an expert by any means. Please visit VHL Family Alliance website for more information. http://www.vhl.org/