Happy Birthday Mom! ~ July 31, 2011

A year ago today, we spent your birthday together.  You were surrounded by your children, grand children and great grand children.  We never imagined that two days later you'd be gone.




July 31, 2010

  As I look at this photo...I remember.  I remember that I was concerned.  Something was wrong.  I never guessed that VHL had reared it's ugly head.  You were 71 years old and never complained of headaches or dizziness.  It was Aunt Val who mentioned...maybe???

The next day was the beginning of a horrific nightmare.  This week has been difficult for your family.  Not that we haven't been grieving for the last 363 days but because each day takes your farther and farther away.

Remember, way back when...you read a book about Edgar Cayce.  You were intrigued about his life and mission.  I later read the book and we would have discussions about life and the hereafter.  We talked about these things for hours and hours.

Last week, I went onto the ARE website, dedicated to his readings and found one regarding "Coping with the Loss of a Loved One".

It read:

Coping With the Loss of a Loved One

Of all the helpful information from the Edgar Cayce philosophy, one of the most comforting is the promise that life is continuous; our time on earth is just one aspect of a soul’s journey of growth and transformation through time. Not only will we meet our loved one again beyond the veil we know as physical death, but our relationship with them will continue as well.

Cayce suggests that one of the greatest gifts we can give to someone who has passed on is to pray for them. And most importantly, to pray that they will recognize that they have moved on from earthly life, and now have the opportunity to continue their soul development in a different way. Cayce says that those we love on the other side are actually as close to us as our thoughts, and we can be most helpful to those individuals by focusing on the happy, joyful times together, and releasing – as much as we can – the sadness and grief we feel at their passing.

We went to church today.  Jeff delivered a beautiful Liturgy.  In the prayer he asked for prayers for family members who were struggling with their health.  I cried.  A woman sitting next to me laid her hand on my arm.  That touch meant so much.  Just a touch from a stranger, who doesn't know my story.  It was thoughtful and very nice.

Edgar Cayce learned that we are here on this earth to love one another.  Very simple...and today's sermon was about loving one another despite our differences. 

So today, I'll look forward...knowing you can hear me and try not to be sad.  Mom, go forward, live, love and be joyful.  I know you can see us...

I love you,  see you soon,
Suellen

EDGAR CAYCE
www.edgarcayce.org/

Kennedy's Book

I wrote a book about Kennedy asking "Where's Grandma?"   It was shortly after my mom passed away and she asked her mom, "Where's Grandma?"  It was a sweet and simple conversation by a three year old.

Kennedy, age 4, learns that her great grandmother has passed away and gone to heaven. Follow along as she deals with "grown up" emotions in her own special way.

 

You can purchase by clicking this link:

SHANA'S SURGERY ~ 4/25/2011

Whew!
What a crazy couple of weeks.

It started...end of March.  Shana wasn't feeling very good.  Headaches, dizziness...the words that scare me the most.  She went to the doctors, then you have to wait for a referral that never comes.

On April 15th, she goes to the ER.  Thankfully Tiana (my grand daughter) goes with her....and texts us on the developments.   Then I get a call in the middle of the night...they are keeping her, there is a tumor and cysts that they need to remove.

As I hang up the phone, a dark cloud comes over me.  Remembering my mother's surgery last summer.  Dread.  Fear.  Sadness.  ...and worry for my daughter.  What she must me going through right now.  VHL Sucks!

I never get back to sleep.  I go downstairs and wait for the sun to come up.  I pack and leave for the hospital.  My husband is so very understanding, I kiss him good bye... 

Mama Bear takes over.

The drive is about 1 1/2 hours...I pick up my grand daughter and meet at my other daughter's house.  We are all nervously quiet.

Loma Linda University Medical Center is in Loma Linda, California.  San Bernardino County...about 100 miles from my home. 

We get to the hospital and Shana is worried.  She had been crying.  My heart breaks...  She tells us what the doctors have said and surgery is scheduled for Monday.  (it's Saturday).  I ask the doctors and nurses about testing for a Pheo (pheochromocytoma).  I believe this is why my mother passed away during her surgery.  The doctor orders a 24-hour urine test.

I've packed for a few days, knowing that I would stay with the kids.  It's hard being away from my husband but it would be harder not being here.  We go through the motions and prepare for Monday.

Monday comes and we don't have a definate time.  We are all waiting in the waiting room.  Shana can only have two visitors at a time.  We rotate.  Her children, her siblings, her parents...all there.

I've been asking about the test results.  No one seems to have an answer.  I tell the nurses, "I will not allow surgery to happen without those test results".

Eight hours have passed...

Finally at 6pm, the surgeons come in.  They are ready to take her to surgery.  I ask about the tests and they say they are taking her without the results.  I ask "why did you order a 24-hour urine test, if you weren't going to wait for those results" ?  I tell them, they can not do the surgery without those results.  I explain that if she is in surgery and the Pheo "fires off"...she could have a crisis on the table.  I CAN NOT LET THEM DO THE SURGERY.  The surgeons then get on the phone...later I find out they are speaking with endochronologists.  ...and they decide they need further testing.  CT Scans follow, blood tests...and we wait for the urine test.  I find out later that they had to send that test to an outside lab and it could take a few days.  I also notice the nurse running into Shana's room to get her urine out of the refrigerator.  24 hours were up at noon on Monday.  They  never had any intention on using the urine tests to decide.  UGH!

I get so frustrated with doctors sometimes.  Some listen, others placate, most ignore me.  But after experiencing my mother's surgery.  I will NEVER not ask question with out a satisfactory answer.  I only have one Shana.

This surgeon is experienced in vascular neurosurgery.  Which is a good thing.  Hemangioblastoma's are highly vascular.  But he only does surgery's on Monday and Thursday.  So we hope surgery will happen on Thursday.  

....it doesn't.  Test results are not back yet.  The CT Scan shows an abnormality on her adrenal gland though.

Waiting for surgery

Shana is getting restless...it's hard being in the hospital, away from home and your kids.  Even though we visit every day.  She wants it to be over with.

Pastor Kenny comes by...he is an awesome presence.  He is sweet, gentle and kind.  He listens and then prays with us and for Shana. There is a light in the room...I feel my mother there.

Shana's surgery is now scheduled for Monday afternoon (April 25th).  That morning, I get up with the kids...the plan is to take them to school, I will pick them up as soon as I'm given the surgery time (they can't afford to miss much school, especially so close to year end) and get to the hospital directly after.  So we get up...I walk the dog, as soon as I get inside, Tiana is at the bottom of the stairs: "they are taking mom into surgery now".  Ack!  I tell them to get up and ready, we need to leave ASAP!!  I call my other daughter, who happens to be on her way to work and right around the corner from the hospital.  I ask her to make them wait till we get there.

We're 20-30 minutes away...and it's rush hour!

When my mother had her surgery...I knew she would be having surgery but I never imagined it would be immediately.  When I got to the hospital...she was sedated and tied to the bed.  They said she was fiddling with the IV's. My mother was blind, I knew that this is the way my mother saw.  Through her fingers...she wasn't fiddling...she was looking.  She was sedated.  I hope she knew we were there.  I kissed her and told her I'd be "right there" waiting for her to come back.   ....I never saw her again.

I couldn't let this happen with Shana!  Neysi would hold them off at all costs...and she did!  She told the nurses...that they COULD NOT take Shana without her family seeing her. Trying to explain what happened with her grandmother.  She was in tears and the anesthesiologist told her they would wait.  Thank Goodness!  Because I broke speed limits to get there.  So did her father and brothers.  We all got there at the same time and were able to see Shana before her surgery.

She seemed ok with it.  She wasn't scared.  She was calm.  The anesthesiologist prayed with us.  I kissed her cheek and reminded her what grandma told her in Shana's dream.  "Everything will be ok".  Then they took her off to surgery.

My other daughter and I went to the chapel...we prayed.  I asked for God to be with her.  To guide the surgeons, to please bring her back to us...  I also asked my mother to hold her hand, cradle her in her arms and keep her safe.

The thing I really like about his hospital is they text you as surgery progresses.  So while in the waiting room, they texted when the surgery began.  When they started the incision, when they were working on the mass...and then, 5 minutes after they started on the mass...we get a text saying the surgeon wanted to speak with us.  AAAAAWKKK!  I've seen it on TV many times, but never experienced them calling us into a special room?!!!  Neysi is trying to keep me calm.  I'm starting to panic...I'm brimming over with tears.  The stress of the last 10 days, is just too much.  I've tried to stay strong for my family....

The surgeon comes in...I can barely talk but I ask him "Is she ok?"...he says "Yes".  I ask "Yes"????   My ears hear it but...I'm barely processing any verbage.  But she is ok.  The other surgeons are closing.  He said, everything went as planned.  I ask him if I can hug him...I do.  And I say: "God Bless your hands".  A relief sweeps over me...but I know I still need to be strong...recovery takes months.

We go back into the waiting room.  My grand daughter is standing at the edge of the waiting room. looking so frightened and concerned.  I tell her everything is ok.  A big sigh comes out of all of us.  We wait till she goes to recovery in ICU.  Saying our prayers and thanking God for this blessing. 

I have this thing with Shana.  I KNOW she is ok when I look into her eyes.  She knows this...no words need be spoken.  I just know.  As soon as I see her...no matter how many tubes and wires are in and around her...her eyes, tell me she is ok.  She is ok.  She is tired, weak and needs rest, so we limit the visit to just minutes.  All the other family members come and see her, two by two.  We leave her to rest...and will be back in the morning.

I feel like I've been at the "starting line" of a race for the passed 10 days.  I cry in the shower...not wanting the kids to see me crumble.  I try to be strong.  I say my prayers everyday!!

The next day Shana has already been out of bed...doing laps around the nurses station.  She only spent 12 hours in ICU.  She is so strong...she amazes me!

She gets to go home on Thursday...13 days in the hospital, 4 days after surgery. 

One evening, as I sat on the edge of her bed...she tells me, "I saw grandma", "I felt her hand on my face, brushing the hair from my eyes"...like she used to do when I was little.  "She cradled me in her arms".  Tears spill down my face.  I knew my mother would be there.  She and Shana were so very close.  There is a calm and peace about  my daughter now.  Something we've never experienced before. 

Not long after my mother passed away, Shana had a dream about my mother.  In the dream, my mother was mad. "damned VHL!"...my mother rarely cussed, if ever.  She also told my daughter that "Everything is gonna be alright".  We hold on to those words.  I reminded Shana about her dream, just before she went into surgery.  They give us all peace.

Our family at the Mom's Day Run.  Shana is in the wheel chair.

We planned a Mom's Day Run in memory of my mother and in honor of Shana.  Shana was determined to be there...and she was (13 days after surgery).  We had a good turn out despite the the previous month (I wasn't able to advertise as planned).  We raised $1,500 for VHL!!!

Shana at the Mom's Day Run ~ VHL Sucks shirts

The Start

My sister's tee-shirt

A Moment with Mom

The participants, mostly family and friends, sprinkled with a few strangers...were all so kind to come out on Mother's Day and run along the beach with us.  Some spoke to my daughter, giving praise and commenting on her remarkable spirit.  Hugs, words of inspiration and encouragement...it was a beautiful day.

After the Run, we went to the sand (we had spread my mother's ashes at sea) and had a moment with my mom.  We miss her so much...and know she is proud of us today.  We will honor her memory every day...especially Mother's Day with the Mom's Day Run, raising money and awareness for VHL in her name!

SIDE NOTE: Up until this surgery, Shana's medical team has been watching five other brain tumors.  Watching for any new development or change.  After her surgery, they did a MRI...and to our amazement, there are no other tumors in her brain.  I can't explain it... and I don't think I need to. 

Prayer works! 

We are so greatful, today! 
We know that with VHL...you have to be "on guard"...because it's always lurking there...but today, we are "thankful"...we are "greatful" to have one more day.

GREAT GRANDFATHER CONKLIN and his grandkids

Back Row: Aunt Val, Lauran Jr, Carol, Grandpa Conklin, James and Uncle Bill
Front Row: Lee, Larry, Uncle Jeff and Mom
Sitting; Alexis and Kay

Aunt Val sent me this photo yesterday and it got me to thinking...about all the family gatherings we used to have at Grandma's house.  Easter, 4th of July, Thanksgiving and Christmas.  All the cousins would be there.  We'd play outside until Grandma would call us in to eat.  Then we'd watch home movies on 8mm film.  What a great time.  I miss those days.

This photo was taken in the early 1960's. My mom was in her early 20's...and I'm always in awe of her.  She had lost her sight, she was so very young...and Shana looks so much like her.  I love it!

My memories of Grandpa Conklin are few...I remember him being thin and tall...that might of been because I was so young.  I remember him being warm and gentle and feeling loved.  He used to tickle us, he had long fingers that seemed gnarled like branches of a tree...not in a scary way, in a wise old kinda way.

I remember he passed away when I was about 10 years old.  About 1968.  My mom asked if we wanted to go to the funeral and I didn't. I was afraid of funerals until I reached my 30's.  I don't know why...I just was.

A few days later, my mom said she had a visitor in the night.  Grandpa!  He stood at the edge of her bed and said "everything will be alright".  She was blind at the time...but said she could see him clearly and in color!  I always remembered that.

Later when my mother passed away, Shana had a dream...my mom was cussing (which she rarely did) about Damned VHL!...then she told Shana "everything will be alright".  I reminded Shana of this right before her last surgery. 

A few days after Shana's last surgery she told me that, Grandma has been here.  She felt her presence, her support, her love.  She felt her arms around her and felt her laying next to her, lightly brushing her hair.

I had been praying for my mom to  be with her on this journey and to hold her hand along the way.  I asked for her to cradle her in her arms and that we knew...everything would be alright. 

...and it was.

I miss you mom!

I love you!

I never said it enough.

I used to think you were the prettiest mom of all my friends mothers. When I came to you for words of wisdom, you always had the right words to say.

You were smart, funny and creative.  I loved our moments during our 52 years together.  Seems like a blink of an eye.  It wasn't enough.

I admired your strength. You inspired me. I loved you so much.  I was so proud to be your daughter.

Even though I didn't tell you enough...and I meant it everyday.

Memory Book

I published a memory photo book of my mother. 

I was able to publish via Lulu.com. So family can purchase directly.

A Not So Happy Holiday

I started to write in December...I couldn't.  So I thought I'd wait till the first of the New Year...and...

Sometimes, I start to type and the tears just flow...sometimes, I bawl.  Trying to put my thoughts together during the holidays and then put them into words were very difficult.

So, today, January 26th...I'll try again.

Christmas at Aunt Val's with Tim's Daughter (I think)  2000?
I love your smile.

The holidays were good and not so good.  Good that we were all together...not so good because we were missing a very important member.  My mom.  It was very hard remembering that I just couldn't pick up the phone and ask you: "what do you put in the stuffing"?   or, "I just found an ornament the kids made"...or, "remember Shana's first Christmas...she got tired of opening presents"?  Those sound like tiny and simple little things...but the Holidays make everything bigger.

I remembered early Christmas's when you and Dad would stay up all night putting Christmas together.  You told me years later, that Santa brought Christmas to the house.  He brought and decorated the tree, he brought all the gifts on Christmas Eve.   When I got older, I realized what a job it must have been buying a tree, decorating it, wrapping all the gifts and putting things like; bicycles together all before we woke up. 

Those were great memories.  Life was much more simple then.  And I think we put much more effort into making those memories.  At least you did.  You'd make a beautiful Thanksgiving Dinner, complete with all the trimmings.  I know I helped, a little. 

On Christmas morning we'd open our gifts and then go over to grandma's house to have dinner with all of our Aunts, Uncles and Cousins.  We'd play outside until dinner time, then open our gifts, then watch old home movies.  I remember Aunt Esther and Uncle Lauren coming down from up north, Uncle Rusty and Aunt Janet...cousin, Kay, Larry and Lee...Aunt Val, Uncle Jeff, Uncle Bill...   Seems so long ago now.



Christmas at Fritz's house 1982


It's been 5 months.  Feels like yesterday...we're all still so very sad and miss you so much.  It's hard to imagine holidays without you, let alone experience holidays without you.  It's just not right. 

Our family is fractured...and we'll never be the same.