thecookiegal

Welcome to the CookieGal's world!

MY Daddy

Tomorrow marks the 9th Anniversary of when my Daddy died.  He too died from Stupid cancer.   He had kidney cancer, they cleared that up, but then he got lung cancer.  He had a lot of problems with that – side effects from the radiation, staph infections.  I was not a nurse at the time – actually, I was working for an Internet company!  My poor mother had to deal with IV antibiotics and PICC lines at home!  She did it very well however.

In September, we found out his cancer was back. We were told that he had “anywhere from 4-6 months to 2 years”.  Pneumonia speed up the process to less than 2 months.   He went into the hospital mid-October and was gone just 2 weeks later.  It was very unexpected.  Now, being on the “nurse side” of life, I wonder, “why didn’t any one talk to us? Why wasn’t there a case manager to help us? Why didn’t any one talk to us about Hospice???” (we thought we had to do that on our own, because no one said a thing!)

The night before he died he had a Brigham’s Hot Fudge Sundae.  The day he died, he ate 3 times – not much, but he ate.  His brothers and sisters came in to say goodbye.  His one wish was that he would not die alone.  He did not. His sisters were with him (my mom took 2 minutes to go to the restroom, my aunt Opened the door for some air, and he was gone)  My sister and I were eating ice cream when he died – something I am sure he would have approved of.

His final words, given when I said “what advice do you have for Cousin Dan” were “Buy Low, Sell High”.  Very good words to live by!

I think about my dad often, and I miss him. He never got to meet my husband Richard, but I know he would have loved him. When Alexander was born, I know how much he would have LOVED to have had a Grandson!   I wondered how he would have reacted when he got sick.  But I know that he would have been there for us every day, and done anything to help.  I am sure he would have been putting on magic shows for the kids in the hospital!
After Alexander died someone said “do you think you father has given Jesus a chance at Alexander yet?”  I am sure after a few days he did, but I know that Alexander is safe in his arms, having a great time fishing, golfing, and doing magic tricks!

So, tomorrow on this 9th Anniversary of his journey to Heaven, please remember him!  Take a nice walk, have some ice cream, and call you Daddy if he is still alive!  Tell him how much you love and appreciate him!

 

Here is a poem I wrote just after he died

My Daddy

My Daddy was one funny guy – he told the best – but yet the worst jokes in the world.  Do you know how to keep a Turkey curious for 24 hours??  I’ll tell you tomorrow!

My Daddy was a kind man – he seldom had anything bad to say about anyone, and if you had something bad to say about someone he would help you find a good thing to say.  He was always welcoming of new people – at work, friends at home, where ever he went.

My Daddy was magical!  He would make my stuffed animals come ALIVE and they would sing and dance to me before I went to bed.  He told me scary stories about the Monster of Mashpee Marsh but he told me funny tales too about Blue Eyed Princesses.  He was the best magician I ever knew – he taught me magic secrets that no one else knew.

My Daddy was adventuress!  He walked on hot coals, drove a race car, took helicopter rides into glaciers, and always went on crazy roller coasters with me, even when it scared him!

My Daddy was an honest man.  He taught me the best was to be successful in life was to be honest first with yourself, and then with whomever you were dealing with.

My Daddy was all these things – but he was also a loving husband, a great father, a brother, an uncle, a son, and a friend.  All of these things made him my Daddy.  He was the best Daddy in the whole wide world!

 

 

3 Comments »

A New Normal (yet again!)

nor·mal/ˈnôrməl/

Adjective:
Conforming to a standard; usual, typical, or expected.

Noun:The usual, average, or typical state or condition.

I have started yet another “new normal” phase of life. I seem to have been having a LOT of new normals these past 5 years.

First I went from being a single person to being a wife. No longer could I pack my bags on a whim and go and visit my friends, or plan a trip to Disney with my aunt. I had someone else to think about. Having lived alone in my house for 4 years prior to being married, it was a bit of a change. As was having to share a BED! I like to stretch out when I sleep! If only we had room for a KING sized bed, my husband would not have to fight me for the blankets so much.

At the same time, I went from being a student, to being a new Nurse. There is always something to be learned in nursing, but it is weird to go from one day having to have your teacher over your shoulder when giving a shot, to being on your own that is a bit unnerving! (for the patients too I am sure!)

Then just as I had figured out how to be a wife, I became a MOM! It was a wonderful time, but a lot of changes too. No longer could we go out whenever we wanted to for dinner or a movie. Our sleep schedules were no longer our own! We couldn’t just leave the house without packing a bag. We went on a trip – there was more stuff for that one little 4 month old boy that we had for the two of us together!

Then, just as we were figuring out how to be parents, the word “cancer” came into our lives, and gave us yet another “New Normal”. Calls from the baby in the middle of the night, were no longer just about eating or diaper changes. Now we had to worry about feeding tubes coming out, TPN lines getting tangled, TPN machines WORKING right! Leaving the house was still a chore of packing – but now, it was packing “just in case we have to be admitted”. I learned to leave a box in the car with “Hospital Thing” Alexander had double of most toys, so we didn’t have to worry about leaving a favorite one at home. Bath time was not as much fun – no more big splashes, because we had to be careful about his central line. Bath time is not fun when you have to cover up in “press and seal”. Worrying about germs went beyond the normal most people think about. No more trips to the grocery store, or the mall – too many people. Couldn’t go to church anymore – again too many germs. Family trips were to the hospital – not the park. We had to learn to give Alexander medications through the feeding tube – I had to learn to put in it to him (well, that or keep making “field trips” to the Winchester Hospital ER – after 3 I was done!!!) Normal was looking for signs and symptoms of infection measuring vomit, to make sure it wasn’t “too much”, counting diapers, daily temperatures, visits from nurses for blood pressure checks. More days than not Alexander was an inpatient. That became our “normal” home. Sometimes, Alexander was scared when we came home – crying when I put him in his crib, as if he didn’t know where he was because he had spent so much time there.

Then came that terrible day in April – our next ‘new normal”. Life without Alexander. What would we do now? No longer did we have to go to the hospital for appointments. No more blood pressures, no more midnight, 3am, 5am, diaper changes. No more medications to worry about. No precious little baby boy to take care of.

What do I do now? How to I go back to life before Alexander? I had not been working since he was born – what should I do now? Could I go back to work as a nurse (I have) should I do something totally different? Who was I now that I wasn’t a “stay at home mom” anymore?

During the few times I was able to be away, get to church, I always left my phone on vibrate – just in case I got a call. I don’t have to do that anymore – it seems strange to not have to “worry” about getting an emergency phone call.

People ask how I am doing – I have to answer “one day at a time”. Each day is different. Some are easier than others. As I face this “new normal” – I do it slowly. I don’t want to rush into a change – as I am still trying to figure out who I am. I know I will ALWAYS be Alexander’s Mommy – but not having him here on earth to love and to teach how to become a fine young man is difficult.

I read stories about other “cancer mom’s” or moms of angels and see the wonderful things they have done to promote awareness for neuroblastoma and to raise funds for research. I don’t feel that is for me however. I have been making hats for kids in the hospital, and I had a Pillow Case party to make Pillow Cases for the kids with Cancer http://conkerrcancer.org/home/ (Thank you to all that came 19 in all made that day!!) My friend Sandy and I made Gold Ribbon lollipops for Childhoood Cancer month. Those things are good for me – keeps my hands busy and I can picture the kids who will get them.

I will figure out this new normal soon enough. Of course, once I do, another change will come my way!

5 Comments »

Dear Alexander,

    

Dear Alexander,

Today is October 1st.  It has now been 6 months since you left us to go be with Jesus.  Mommy and Daddy think of you every day, and we miss you so much!  We miss your hugs and smiles, and your beautiful laugh.   We miss snuggling with you and reading your books, and saying your goodnight prayers.

6 months – some times it seems like yesterday, other times, like a lifetime ago.  People often ask us “how do you do it – how do you move on?”  I tell them, one day at a time.  Some days are easier than others.  Some days all I want to do is cry because I hurt so much, other days I can make it through the day.

You missed Easter this year.  You never did get to enjoy Easter. Your first, was just after we found out you had that STUPID CANCER.  You were so small and sick, and we just couldn’t get you to smile.   Both Mother and Fathers day came and went since you were gone.  Last year we were in the hospital for those day, this year, we were without you.  It was hard to feel like a Mommy or Daddy when you are in Heaven.  We will ALWAYS be your Mommy and Daddy, but it was so lonely here without you.  Your Auntie Lisa send me a nice treat, and Mommy’s friend Crystal spent some time with me.  You remember her right? She is S&C’s Mommy.  Sometimes I get sad when I see C.  because you were about the same age, and I am sure you would have been great friends.

4th of July came without much fan fare for us – Last year we were in the hospital, as were most of your friends.  They let us go and watch the fireworks in a special place.  I didn’t take you because you were sleeping and I didn’t want to wake you up.  I hope you could see beautiful fireworks from Heaven.

Mommy and Daddy went on a trip to California.   It was good for us to get away, but you were never far from our minds.  Daddy saw someone blowing BUBBLES one day and he thought of you then.  We stopped in Alexander Valley and took pictures.     

While we were at the family reunion, they dedicated a bush to you and we got to tell Daddy’s extended family all about you. 

On the way back, we were hungry for lunch, and we stopped – when we opened the menu we saw the restaurant was named ALEXANDER’s!  Did you put it there just for us?

   

Mommy went back to work as a nurse.  After you died I wasn’t even sure if I wanted to be a nurse anymore.  Taking care of you was so hard, I wasn’t sure if I could do that anymore.  Of course, I take care of grown ups and not little kids, so it is a little different.   It went okay – it was hard at first.  Some days I would leave thinking “what am I doing here?  I just want to be home in bed with the covers up over my head!!!”   But I kept going back.   Two weeks however, I started a new job.  I am going to be working as a Visiting Nurse. Going into people’s houses to check on them.  You had visiting nurses and you liked them right?

This month Daddy and I went to the Cycle for Life to help out and cheer on the bike riders as they raised money for your friends at the hospital.   We saw many people we knew.  One of them, didn’t know that you had gone to be with Jesus, so it was very sad to have to tell her.

We saw another little boy C. who has the same kind of cancer you had.  I have to say I was a little jealous.  He is doing so well.  Everything went right for him, he didn’t have the kind of problems that you had.  But then I think, how can I be jealous of someone who is doing so well!!?!   I am of course happy for him and his family, but I do stop and wonder – why him, why not my Alexander? Why did you have to get a really bad tumor, that made you hurt, made you not be able to eat or walk or do all the normal things a little boy is supposed to do!?!?!   I try not to get angry, because anger won’t get me anywhere.

Speaking of anger – you know I am still mad at some people.  Please help me deal with that anger and just let it go.   I am trying, but, please send me some of your good and loving ways, to help me move on!

You friends C&N are having a tough time right now.  Please look out for them and put in a good word with the Big Guy.  Tell him you don’t need any more friends with you in Heaven!

Okay – I should end here, or I will just end up crying all day long.

I love you and I miss you very much,
Love,

Mommy

11 Comments »

Dollhouse Homestead

Seven Acres in Suburbia

From the Heart

my journey through love, life and loss

CorFitness

Strong Mind. Strong Body.

My Thoughts Now.....Life After The Accident

How I am coping with life after the accident that took my Zachary and my independence away.

New John for a New Year

Life is different now

Scribbles & Crumbs

Hope. Kindness. Faith. Love

A Generous Helping

Of Laughter & Tears

blessedstray

Sometimes I'm St. Ray; sometimes I'm a stray. I am always blessed.

God Wins...but can I ?

A Mother's Journey

Sharon Randall

This is my journey -- what's yours?

Forever 21

A broken heart is open to receive...

Speaking Up for Childhood Cancer

Increasing awareness to fight the number one disease killers of children worldwide

Thanks to my Lucky Star

a story about being guided by the brightest star

de Niall Heaven Bound

Welcome to the CookieGal's world!

Penny writes... Penny remembers

Life changes, usually when you're not ready

Grieving Dads

To the Brink and Back

Life of Kai

Pure Love + Loss = PURPOSE

Sweet Tooth Tootsie

Embrace your inner Sweet Tooth