thecookiegal

Nothing too exciting to write about, but I have a few things running around in my head.

1st.  Toddler bedtime!  Miss J, is an expert at taking her time to get to bed!  Drives us crazy some nights.  One more book…..I am thirsty….turn the light on, I am afraid of the dark (despite her nightlight) .  Tonight was an easy night – because she didn’t take a nap!  Ah – the nap – so good for me, so I can get a nap.  But, if she takes a long one, that it is harder to get her to bed at night.  If she doesn’t take one at all, then she is crazy at night!!

The logical part of me knows that she needs to get to sleep at a reasonable hour, because if she doesn’t then she will be cranky pants the next day!  I have things I need/want to do at night – and can’t if she is awake.

Then there is the “cancer mom” part of me.  The part that worries, and thinks “so what if I read and snuggle with her forever.  She might get cancer tomorrow, and then what!??!  I missed so much snuggle time with Alexander!  After he got sick, he was always hooked up to something (even at home!) so it was hard to snuggle!!”

Yup.  That is the mind of a cancer mom.  We go down that road.  Not every night – but often.

And on that topic of STUPID cancer….there is often a debate among the cancer world – are those dealing with cancer “fighting” are the on a “journey”  did they “win or loose” the battle!?!?

For me, I say that Alexander fought a battle with STUPID cancer and lost.   Some people might think that is wrong to say he “lost” his battle.  To them, “loosing” implies a person didn’t fight hard enough, or well, or something like that.   But, I look at it differently.  I look at cancer as a BATTLE.  It is one that people fight very hard.  STUPID cancer is an EVIL beast, and it can’t always be beaten.  I liken it to soldiers fighting in a war.  War is also an evil beast, and sometimes people die in it.  But we don’t look at those people as being a looser.  We call them HERO’S!    Those that make it home from the war front are also called HERO’S!
So for me, any one fighting a battle against STUPID cancer, is a HERO, no matter what the outcome.

We have this quote on Alexander’s headstone.  He fought a very hard battle, and put up a good (No GREAT) fight.  It may have beaten him, but we know now that he is Safe in the arms of God and His Angels.

This Saturday, there will be a dedication of an Angel of Hope statue in my city of Woburn.  The Angel of Hope came from the book, The Christmas Box, by Richard Paul Evans.  Since he wrote his book many statues have been placed, along with pavers to honor children that have died.   (http://www.richardpaulevans.com/index.php/angel-statues/)

The statue in my City will be at Horn Pond, a beautiful location in town.  (http://www.woburnmaps.com/hornpond/)   My dad use to love walking this pond!

There are some people in our city that are not happy with the location for one reason or another.  They have a right to their opinion of course.  And, I have a right to mine, which I have written out in a letter to the editor.

Dear Editor:

On April 1, 2011 I joined a club that no one wants to be a part of.  That is the club of people whose children have died.  My son fought STUPID cancer for 13 months, and died when he was just 21 months old.     Because he was so young, and so sick, he never went to school, playdates or made any friends outside of the hospital.

As parents, we want our children to never be forgotten.  But, life marches on, and people move on, and forget. Oh sure, they will remember when they see us, but unlike parents, thoughts of our children are not part of their daily lives.
Some children are remembered through year book dedications, or scholarships being named after them. But as I said, my son was too young for school, so there will not be any of that.

Not long after my son died, I heard about the Angel of Hope that is in Sterling, MA.  I thought it was a wonderful idea, but being so far away, I did not have a chance to visit it.  I thought about having a paver placed in my sons memory there, but again, it was far away.

When I learned that a group was wanting to bring an Angel of Hope to Woburn, I knew that was something I wanted to help happen!  I was excited that it would be at Horn Pond, a place that many people go to, to walk, run, and enjoy the beauty of the area.  I thought it was a perfect spot.

The pond on the other hand is a place of beauty and peace.   My late father use to enjoy walks around the pond and just sitting with its beauty.   I know that the bereaved parents that have placed a memorial paver in their child’s name, will find peace, knowing that someone will see their child’s name in letters.

In one letter to the editor, someone suggested that a cemetery would be a better location for this memorial.  I for one, think that would be the worst spot.   A cemetery is a place of sadness.  Many of us bereaved parents have children buried there, and when we go to visit, it does not bring peace and joy.  Rather anger and sadness that our children are even there.   It is not right for a parent to have to bury a child.

To the family who has a bench in honor of their loved one who died on September 11.  I can’t speak for others, but I can assure you that every time I see that bench, I say a little prayer for your loved one, and all those that perished on that horrible day.  I imagine that people visiting the angel, will sit in that very bench to think of their children, and I am sure your loved one will come to mind as well.

So, why is it important to have our children’s names printed in stone, and not at the cemetery?   The Late Elizabeth Edwards explains it well:

“If you know someone who has lost a child, and you’re afraid to mention  them because you think you might make them sad by reminding them that they died–you’re not reminding them. They didn’t forget they died. What you’re reminding them of is that you remembered that they lived, and…that is a great gift.”
By speaking our children’s names, we remember their lives.  We remember what joy they brought to us and the world around us.   No, my son won’t have year books dedicated to him, but his name will be forever etched in stone, for the hundreds, if not thousands of people that walk the pond every year to see.

I thank the Webster family for bring this memorial to town, and I thank the Mayor and those that approved for it to be in such a special place.

Nancy Whipple – Mom to Angel Alexander the Great, forever 21 months old

What is it about the number 5?   When I was in High School, I went on a retreat, and we had teams that had competitions.  Our team leaders said to us “hey, this is the 5th year of this retreat, and 5 is special, so let’s win!”  We did win.  The ONLY year I was ever on a winning team, as a camper or as a staff member!

for kids, 5 seems like a cool age to be.  Maybe because you can use all your fingers to show your age, or because if your birthday is just right you can start kindergarten?

Many birthdays seem to be special in 5’s  – 10 (double digits) the Big 30, 40, 50, (okay, so you could say those are 10’s but I am sure you get my point.

Today has been 5 years since I last held my beautiful son in my arms. 5 years since my heart was shattered into a million pieces.  Some of those pieces have been put back together, but there will always be one missing.

5 years.   How the hell did that happen??  So much has happened in 5 years.  I buried one child.  I gave birth to two more.  One of my children had open heart surgery at 6 weeks old.  We moved into my childhood home.  I started on a new job, far, far away from the nursing field.  So many things have happened in just 5 years.   It seems like a lifetime ago, but yet it seems like yesterday.

As Richard pointed out in his post earlier tonight, I can hardly remember what I did 5 DAYS ago.  But I could tell you everything that happened from April 1, 2011.  Like him, I won’t go into the details, because they are horrible.  For a long time, when I would close my eyes to go to sleep ALL I could see was those horrible moments.  That did eventually fade.  But, I can recall them in second if I want to, and sadly sometimes, even if I don’t want to, they will pop back into my mind.

I woke up early today.  When I did, my heart was aching.  Literally aching.  I looked at the time.  It was the same time when Alexander first started to crash and have trouble.   A bit later, I really wanted to just stay in bed all day, but we had plans to do something special.   Julia wanted to “wake mama up”  but Richard was pulling her away.  Elizabeth, managed to find her way into the room, and I told Richard it was okay.  He called Julia in to “wake mama up” and she did!  The two girls climbed into bed and crawled all over me.  We had a fun time laughing and talking about what we would do today.  The aching started to fade away.

We had a pretty good day.  Lots of laughing and fun.

In one of the support groups I go to we often say, you don’t move ON but you do move FORWARD.  That is what I do.  one day at a time, sometimes, one moment at a time.  I move forward.  Further away each day from the worst day of my life.  Some days the pain is as raw as it was those first days.  But, thankfully more days than not though, it is there, but not right in front of my face.  Life is bearable most days.  Some days it is great.   One day, one moment at a time.

Time is a weird thing. Sometimes you can’t remember what happened five days ago; and other times you can remember things that happened a long time ago with crystal clarity. Today is one of those days for me. Five years ago today, We lost our son, Alexander, to cancer. I remember Alexander returning to the ICU at around 2:00 am and our surgeon telling us that Alexander did great in his 16 hour surgery. I remember getting up at around 6:00 am and getting ready to go over to the ICU. I remember going past a video game Galaxian and wanting to play it. Something in my mind said you should go to Alexander so I passed the game and gave it a second look. I remember walking into the ICU and seeing the surgeon heading out and him saying that Alexander is doing great even though he was crashing as we spoke. I remember turning the corner and seeing a bunch of activity around one of the rooms and thinking, “they are doing rounds” and then getting closer and realizing that it was Alexander’s room. << what the F*ck. Fatale crash restarting Microsoft word. Where the hell is my document. Slam…. one hour later after doing some dishes. Ok now I have to restart this document.>> Alexander was crashing for the first time and the doctor’s and nurses in the ICU were trying to save his life. Someone quickly moved me to the back of the room to be with Nancy, my wife. I will spare you all of the details that are still burned in my mind. Alexander crashed again; about the same time as I was writing this document for the first time, five years ago today. I remember holding Alexander as he passed away around 12:40pm

I remember going to the hospital garage getting packing up some of our stuff that we had brought to the hospital and finding a book (Noble Dead series) that I had misplace and though lost before going home. I don’t remember the drive. I remember very little of the next week as we prepared for Alexander’s funeral.

Time has moved on Nancy and I have two beautiful children Julia, almost four, and Elizabeth, 2 1/2. Where has all of the time gone? I can list off lots of stuff that happened some of the very slowly and some of them very fast. Slow ones my wife being pregnant twice, my 22 hour work day Sunday into Monday mornings. The fast one Elizabeth’s 2-3 hour open heart surgery and then being out of the hospital in one week.

I would like to say to all of my friend in the group no one wants to be it. Thank you for all of your support over the last five years. Nancy and I think about your families all the time as your anniversaries of your children passing comes along. To Camp Sunshine Thank you for the Services that you provide to all of the families going through cancer and bereavement of children who have passed. To my family, thanks for your support.

To all of my other friends, remember that time is a weird thing. Play, love and enjoy ever minute with you children and family. Because I pray that you never have a day where all of the details are burned in you mind like my day five years ago.

Tomorrow, March 8th, marks 6 years, since we heard those words “I am sorry but…” . In a few weeks it will be 5 years since we last held Alexander in our arms and said goodbye.   5 Years.  So much has happened in that time.  We have had 2 beautiful girls.  One of our girls, had open heart surgery at just 6 weeks old.  We moved – although just up the road.  I started working again.   I am working, but not as a nurse.  I work in a bakery at a supermarket.  I like to say “if I drop a loaf of bread, it is no big deal.  If I dropped a patient, it is a whole lot of paperwork!”

Life is pretty bearable most days.  My friend and fellow bereaved parent describes it well in this article:

But there are still some days, that are very difficult to get through.  There are still days I wish I could just crawl under my covers and stay there forever.   I wish I didn’t have to deal with life – to work – to take care of my children – to have chores to do.   It can be hard to get up, and put a smile on my face and face life.

I still have a lot of anxiety that my two girls will get cancer and die also.   A few weeks ago, the older one was sick with a bug.  I was doing fine until she said “My head hurts – my neck hurts”.  My first thought was meningitis.   I called the doctors office and they calmed my fears of that, by having me tuck her chin to her chest.   But when complained on and off for several days afterwards, that her head hurt – I had it in my mind that she had a brain tumor.  And not just any brain tumor – a DIPG which is terminal.  I had our Make a Wish Trip to Disney planned out.    Then, I texted a few “cancer mom” friends and they helped me snap back into reality (although, I really would have felt better if I could have given her a quick MRI to calm all my fears)

The PTSD can be bad (click here for posts where I talk about that  https://thecookiegal.wordpress.com/?s=ptsd&submit=Go )
It can be a big thing – like a child being sick with similar symptoms that your child that died had.  or it can be something small.  I was in church a few weeks ago, and I saw a boy maybe 12 or 13 heading back in the pew and he put his hand on his moms shoulder.  I almost lost it right there!  Now, this boy didn’t look like Alexander, or even what I thought he MIGHT look like at this age.  But something about that one moment, almost brought me to tears (I did hold them back as I had my children with me)

When my kids were newborns, I thought that age was pretty boring!  (although some days I do miss just being able to snuggle them and rock them to sleep)  It is fun to watch the children grow up and do new things every day.  My older daughter is very bright and comes out with the smartest things!  It is fun to watch her play pretend and make things up in her head!   My younger daughter, is climbing into EVERYTHING right now.  Drives us nuts, but we love it too!

While I am loving this age they are in, I am not like most people who say “don’t grow up to fast!” or “how did they get to be that old?!?”   I am SO HAPPY they are GROWING UP and getting older.  In fact, some days I want them to HURRY UP and get older!  Not to make my life easier (no diapers, no sippy cups)  but just because they have the CHANCE to grow up!   Alexander didn’t have that chance.  He didn’t even make it to be 2.   Growing older is a GIFT not every one is given.

Hug your family and tell them you love them every day.

We had the opportunity to go to Camp Sunshine again for a bereavement weekend (read past posts here:  https://thecookiegal.wordpress.com/2013/05/28/camp-sunshine/)

I didn’t know about Camp Sunshine when Alexander was alive.  Because he was in the hospital so much, it is likely we wouldn’t have been able to go then anyway.  Camp is a very special place.  It is a place that kids with cancer and other illnesses, can just be KIDS.  They get to run, swim, play, and not worry about other kids looking at them funny, or being afraid of them.

During the bereavement weekends, it is a chance for us parents to talk about our children without making anyone feel uncomfortable.  If you are not a bereaved parent, you might be thinking “why would someone feel uncomfortable?”  Believe me it happens.  You mention that you have a child that died, and people just don’t know what to say.  Some people change the topic, and some people just won’t mentioned the child that died at all.  Sometimes, they will say “I don’t want to make you sad”.   Well, let me tell you NOT talking about our children makes us sad!!  Yes, we might cry talking about our children, but that is perfectly okay and normal.  When we are at camp, we can talk about our kids, cry, laugh, remember.  It is a beautiful time.  We don’t have to pretend to be happy.  A lot of people do that.  They go to work, and put on a happy smile, only to cry the whole way home, or at night when they are alone.

Camp is a lot of fun for both the parents and the kids.  The kids go off to Day Camp, broken down by age.  The parents have free time, discussion groups and Super Duper Blooper games!  The games are fun and silly, a way to get to know other parents in a fun way.  This session however, I decided to skip them.  I also skipped out on most of the discussion groups as well.  I don’t know why really.  Just kind of needed to “be” this session, rather than be involved.

One of the beautiful things about the November session, is that parents are given the chance to make a memory quilt of their children.  Some people include favorite clothing, or memories. Others have pictures put on their quilt.  Last year, we made a beautiful one out of Alexander’s clothing.  Before we went I was all excited to make it.  But, on our way up, I realized there was no way I could cut into Alexanders things!  Thankfully, I did not need to.  There are quilters there, that will do as much or as little as the parents want.  This year, I wanted to make something I could snuggle with, and something that included part of all of my children.  I had a few ideas, which I talked about with the quilter.  We were able to have the same person make our quilt that we had last year.   She again did a beautiful job.   I still did not help with the cutting, but I did help with the design this time, and I did a bit of the edging. (I tried to last year, but I couldn’t get past a few stitches!)
We talk about a lot of different things in group, but often the same topics come up from all parents. A big topic is Worry.  We worry about our living children – how are they handling the loss of a sibling?  Will they get sick too?  Will they die too?  Someone made a point about saving our living children’s clothing.  I too have thought of that.  What if something happens to one of my girls, and I need to make a memory quilt for them?  I try not to live in those thoughts for long, but they do cross my mind.

Camp is a wonderful place, because I have met so many wonderful families.  I wish I never had to meet them, but I am really glad I did.

Grief is a difficult thing.  I am 4.5 years into this journey without Alexander.  Sometimes it feels like it was yesterday that he was here, sometimes it seems like a lifetime ago.   There are days when I just want to stay in bed all day with my head under the covers, and there are days I can go about my life and be happy.  But, even in those happy days and moments, if I stop and think, I remember Alexander and how much I have lost.   I often hear people say “our child was born and our family is complete”.  My family will never be complete.  We will always be missing a part of it – a part that can never be replaced.

People that are new to this journey ask “does it get better”?   I don’t know if I would say better – because life will never be the same, but it does get different and bearable.   Yes, I am happier than I was 4.5 years ago.  Yes, I smile more than I cry. (in fact, I was saying to the moms discussion group, that I haven’t really cried about Alexander in a long while, and even that makes me sad!).  Some people might say “well, you have your girls now”. Yes, that is true.  They are both Joys in our lives.  But, even with them, I am sad.  Sad that they never knew there brother, sad that they have to visit him at a cemetery.  Sad that he never got to be a big brother.

I will end this post with a link to another blogger I recently discovered.

http://www.timjlawrence.com/blog/2015/10/19/everything-doesnt-happen-for-a-reason

When Alexander was first born, I thought he was kind of boring.  I mean, all he did was eat and sleep.  As he got holder, he did start making little cute noises.  And then he became a little active – rolling around from his back to his belly.  Then he sat up, and was playful.   Then he got STUPID cancer.   At first he was just so sick.  He didn’t do much again but sit with us or in his hospital crib.  But after a little while, he did start to become playful again.  But he never crawled or walked (although looking back I am kind of glad about that now, because he was on TPN <IV Nutrition> for up to 24 hours a day!  chasing a little boy with an IV pole or bag would have been a real adventure!)

As you know, Alexander died when he was just 21 months old.  He never got to be 2.  He never went to pre-school. He will never go off to High School, or college or get married.   He is forever 21 months.

I get so upset when I hear people say things like “Oh why is my baby growing up?”  or “I wish they could stay this young forever”.   Deep down, I know they are just being nostalgic, but really, I just want to scream “JUST BE F-ING GRATEFUL THAT THEY ARE GROWING UP!!  ENJOY THE FACT THAT THEY ARE GROWING UP.  YOU WOULDN’T WANT THEM TO BE FOREVER THAT AGE!!!”

When Alexander was born I imagined a life for him – a future, things we would do as a family.  Those hopes and dreams are gone now.   With the girls, I try not to think to far ahead – part of the PTSD I suppose.  But instead, I am just enjoying every day and every change with them.   When they were babies, I again thought they were kind of boring. Although, after we had Elizabeth, I did enjoy those quiet moments of rocking her to sleep, after a day of running around with Julia.  And there are times, I wish that I could just rock them to sleep and not have them be wiggle monsters.   But mostly, I am just trying to live in the moment, and enjoy whatever moment that is.

Right now I am enjoying watching Julia’s imagination grow!  It is fun to see the world through her eyes.   Last week we were baking cupcakes.  While we were waiting for them to bake, she went to her play kitchen to bake some more “cupcakes”.  Because it was late, and we wanted to frost the real ones, I put them in the fridge to cool off.  Shen then did the same with her pretend cupcakes.  I took her to a little museum this week, that had a play kitchen.  She spent such a long time in that one space!!

Elizabeth is growing up too.  She enjoys her blocks and bucks and putting hats on her head.  It is fun to watch her too.

Perhaps one day when they are older, I will long for these days of them being silly and playing make-believe.  But for now, I am loving the age they are, and looking forward to how they will grow up and change.

Every age is special.  Enjoy the moment.

Today Alexander would have been 6 years old.  He should have just finished up kindergarten and be moving on to 1st grade.   But alas, he is not.  He is forever 21 months old.  21 months 3 days old to be exact.  Elizabeth turned that age on June 24th.  Both my girls are now older than their brother ever was (big giant sigh…..)

We once again had Oreo Cookie Day on June 25th.  If you missed it this year, don’t worry!  ANY day is a good day to eat Oreo’s and to celebrate LIFE!!!

Today was overall a good day.  Julia had a little camp to go to in the morning.  We went and got Alexander a birthday balloon, but did not have a chance to bring it to him as she had her 3 year check up today.  All is well with her!

This afternoon, we went to Build a Bear, so Julia could get a new friend with a gift card she got for her Birthday.   When I was pregnant with Alexander, my birthday fell on President’s day that year.  Build a Bear sent me a Free Bear to celebrate! (but sadly I didn’t get one this year!)  I choose a Bunny.  Alexander never got to play with the bunny, but I have slept with it ever since he died.  It was “his” bunny, so I feel close to him when I have it.  Well, Miss Julia also likes my bunny, and will sometimes “borrow” it!  Today, she picked out her OWN bunny to have! (Whew! no more sharing for mommy!)   Because it was Alexander’s birthday, I wanted to do a kindness in his name.  I bought a gift card, and had written a note about it being Alexander’s birthday, and that he had died from STUPID cancer.  I also put a few of my favorite Facebook pages about Childhood cancer on it. There was a family in the store with a little boy who looked to be about 6 years old.  We choose him to give it to.  Julia handed the boy the card,  and I told the mom and grandma, that there was a note explaining why he was getting the card.  (lest they think we were scary people – heck they might have thought it anyway!!)

Tonight we had a special dinner of Lobsters (because it is summer and why the heck not!?) and I got an Oreo Ice Cream Cake.  Julia enjoyed putting the candles on, and wearing a party hat, singing, and blowing out the candles for Alexander.  I have seen other friends do similar things, and I had never thought to do it.  But this year, now that Julia is getting older and is understanding more, it just seemed to be right to celebrate this way.

Julia turned 3 last week.  Poor thing was sick on her birthday with a fever.  I had a bit of PTSD over this.  Alexander had a wonderful 1st birthday, but the next day he woke up with 103 fever.  He spent 27 days in the hospital including some time in the PICU.   Deep down I knew Julia just had a virus or cold, but that PTSD has a nasty way of sneaking up on you!!!

Julia will be going to pre-school in the fall.  Another milestone Alexander didn’t get to achieve.  But, I am feeling good about it.  I have been working with a new therapist on PTSD, and moving FORWARD (not, not moving ON – but FORWARD).   Yes, there many be moments that I am sad that Alexander never got to go to school.  However, right now I am much more filled with JOY that Julia IS going to school!  I already have a backpack for her, and I look forward to going to the store in August to pick out some school supplies for her.  We had a little orientation that was held in the Library.  I remembered going to the library when I was in school, and getting to order from the Scholastic Book fair.  I was excited to think about all the new things she was going to learn at school!