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4 Long Years

Tomorrow it will be 4 years since Alexander joined the angels.   4 years.  How did that happen?  It seems like a lifetime ago, yet it seems like yesterday.

I TRY not to think about what he WOULD be doing if he was alive, but that is hard.  I have many friends who have children who are the same age as Alexander, so I have a constant reminder.  I have heard some bereaved moms say they just can’t be around children that would be their age.  I can understand that.   However, for me it is okay most of the time.

I don’t have anything profound to say in this post.

I miss my beautiful Alexander.

 

Alexander looks out the window to the world!

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March 1, 2013

Tomorrow  is March 1st.

Alexander has been gone for 23 months
Alexander would be 3 years 8 months old

Julia is the exact same age Alexander was when he was diagnosed with STUPID cancer.

it is a strange time.  I have mentioned in a past post about having PTSD.  Most days it is okay, but some days it is really bad.  For a bit Julia seemed to be having trouble pooping.  I was freaking out, because that happened to Alexander (she now poops up to 3 times a day – not worried anymore there!)  There have been days that she hasn’t wanted to eat as much, and isn’t taking in as much from the bottle. Same thing happened with Alexander before he got sick.  Even little things can set me off.  I had bought Alexander some “name stickers” and put them on a bunch of his toys for fun. But, then some of his toys have a label that says “Alexander Whipple” that I made with my label maker.  The ONLY reason they are there was in case we forgot them at the hospital – so people would know they were ours, or to let them know they weren’t toys from the play room.  That little label can bring back a flood of memories.

We are in a whole new world with Julia.  She is starting to learn to crawl.  She can “lean” and almost stand by herself.  Alexander never did that.  She babbles a lot – Alexander babbled a little bit at one point, but then he never spoke. We have to learn what it is to have a “normal” child – a child whose life doesn’t revolve around the hospital, medications, shots, chemo, surgery, blood transfusions.  A child that can just GROW UP and be normal (yes, I know there is no “normal” in the world – but work with me here)

We took her to Floating Hospital in December to have an Ultrasound Scan.  We had not “worries” it was more of a “peace of mind for mommy and daddy” scan.  We had the same Tech that took care of Alexander.  She is fine.  No tumor.  But, even with that scan, I still worry.

When we had the recent snow storm, many of my angel mom friends were finding themselves missing their children in a special way, because of their love of the snow.  We took Alexander out when he was about 6 months old. He was not too impressed.  We bought him a winter coat when he was 18 months old – he wore it once.  He seemed to be happy, but he really only went out the one day into the snow.  He was in the hospital the rest of the time.  So, for me, I don’t have any special connections to the snow and Alexander.  Valentines day – well – he was 7.5 months old his first one, the second, he was sick in the hospital in the middle of his Bone Marrow Transplant.  Again, no strong connections to the day.

Some other Angel mom’s and I have started to try to go out once a month for dinner.  It has been very nice to be able to talk to those that get it.  Most of them, their children were older than Alexander when they died.  I find myself jealous of this in some ways because they had so much more time with their children.  Their children had friends – friends that will remember their children.  Friends that will make the world a better place because of their children.   Alexander really didn’t have this. We (Richard and I) had friends in the hospital, and Alexander would “interact”  with the other children (when he wasn’t  banished to his room because of a fever).  But outside of that, he didn’t have a chance to make friends.  And those other children were always older than he was.

But, while my friends had more time – many of their children fought against the cancer for YEARS, and despite all they went through they still died!  It just all SUCKS no matter how you look at it.

I was missing Alexander a lot the weekend of my birthday (I miss him ALL the time – just some days it is harder than others)  I was talking with a friend about it, and said maybe it was because it was my birthday. Then I thought about it some more….  in 2010, we went out for dinner the day before my birthday.  At dinner, Alexander wouldn’t eat his food, but I gave him a dinner roll to “play” with. He really enjoyed it. We took one home with us, and he had it while we ate cake.  That night, he threw up for the first time ever!  We thought we were pretty lucky that it had taken him 7.5 months to throw up!  21 days later, he was diagnosed with STUPID cancer.  Richard and I have been back to that restaurant, but I couldn’t go there again for a birthday.  In February 2011, Alexander was in the hospital in the middle of his bone marrow transplant process. He was on the “upswing” by then, but still,   we were in the hospital for my birthday (which only seems fair, since we were there for Richard’s birthday too)

Grief is a strange thing.  It creeps up on you when you least expect it.  I have friends now that are “years” in to this process – and yes it is a process.  Someone once told me “the tears never stop”.  Her daughter had been gone for 20 years.

Sleep is still a problem for me. (of course having an 8 month old doesn’t help!)  I have trouble still FALLING asleep.  I avoid going to bed sometimes.  I don’t know if it is the quiet or what – but I can’t get myself to go to bed.  But, once I do get there, and I am asleep – I never want to get up.  There are days I wish I could just stay there all day long and never face the world.  I know most people have those “days” but for me, it is most every day.   But, I have to get up – I have to take care of Julia – I have to go to face life.

I have been having a rough couple of weeks.  I use to be such a positive person – but this last week especially – I have been hating things in my life.

I hate that I know so much about childhood cancer – I wish I could go back to being oblivious like most of the world, and just go to the Scooper Bowl every year to “support” the Jimmy fund.

I hate that I now have more friends that have had a child die than those that don’t know such heart ache (but yet, I am so thankful that I DO have these new friends in my life!).

I hate the fact that Julia will never truly KNOW her big brother.  I hate that Alexander isn’t here to teach Julia things.

In my support group, The Compassionate Friends, they often say you don’t get OVER grief, you get THROUGH it.  It is a process.  A very long long process.  Some days are easier than others.  Some days you just want to crawl back into bed and never come out.

AlexanderJohn

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New Year, New Chapter

Tomorrow is New Year’s Eve. A time for the year to end, and for a new year to start. Many people make resolution this day – decide to go to the gym more often, diet etc. Many people do not keep those resolutions.

For us, 2013 will be the year we celebrate Julia’s first birthday.  Richard and I will have our 7th Wedding Anniversary. I will turn (gasp!) 40, and, we will start living more of our lives with OUT Alexander than we had WITH him. Yes, on January 1, 2013 it will be 21 months since our beautiful boy took his last breath. It is hard to believe it has been that long. It still seems like yesterday in many ways.

In these 21 months we have said good bye to several of Alexander’s friends – some we knew well, some just in passing at the clinic. All lives cut too short. My friend Rosanne also died last year after a 5 year fight with stupid cancer. I went to 2 funerals for two men that died unexpectedly, one while participating in a charity bike race! I went to the funeral for a friend whose son was born into the arms of Jesus, never even taking his first breath outside of his mothers womb.

It has not been an easy 21 months for us in a lot of ways. The sadness I feel on many days is difficult to describe – only those that have lived the horror that we have gone through can understand.

Tonight I was texting with a friend (yes, I have become a text chatter like a crazy teenager!) and I was mentioning what I just said – how we will start to live longer without Alexander than we did with him. Ever the positive person (and she is one person that DOES get it – her precious girl died the month before Alexander), she helped me to turn my sadness around – to look at this new year as a new chapter in the Julia files. I also think, I need to look at it in the positive that at least we HAD Alexander for 21 months! The first child that we knew from the hospital that died lived just over 1 year. Another mom I have since met, lost her daughter who was younger than Alexander. Another mom I met only had her son for 3 days (he did not die from cancer – doesn’t matter, it all still sucks) .

So my resolution for the new year, is to try to focus more on the POSITIVE. To remember all the GOOD times we had with Alexander. And despite all the STUPID CANCER stuff, we did have a lot of good times! The last month we had with him was wonderful! I also find myself the happiest when I am helping others – reaching out to other families that are going through stupid cancer things, doing things for them, raising money and awareness for childhood cancer (and off course making Pillow Cases!)

As you think about a resolution you might want to make, consider not what you can do to better YOURSELF, but what you can do for OTHERS – those around you – your friends, you family, strangers in need.

And in the last words of Cole, whose 1 year Angel Anniversary is coming up in January,

SMILE – BE HAPPY!!!!!!

Image

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1 Year Later from Mommy’s View

One Year.  One very LONG year.  Tomorrow, April 1st, it will be 1 year since  our beautiful Alexander took his last breath as we held him in our arms.    Just hours earlier we had such hope.  He had made it through the 16 hour surgery, they had removed a large amount of the tumor.  We had hopes of more treatments, him getting well, growing up and being a “normal” little boy.  Only a few hours after his return from the OR, he started to decline.  They tried in many different ways to save him.   They tried so very hard.  We were in the room for most of it, so we could hear them working on Alexander doing everything in their powers to help him.   But it soon became clear to us, that there was no hope for any kind of recovery.   We made the decision to turn off the machine that was helping him breath and to hold him in our arms one last time.  We said his good night prayers with him one last time, blew bubbles for him, and he went to Heaven.  Both Nana and Oma were there.  They took turns holding him, saying their goodbyes.

It was strange for us not to be at “Our” hospital.  We didn’t know these doctors and nurses, and they didn’t know us.  However, they were still wonderful.  They gave us all the time we needed.  There was no rush to leave him.  They brought us a memory box, and some paper to make hand and foot prints of him which we did.  We spent some time with him, and then decided it was time to say goodbye and leave him.  That was one of the hardest things I ever had to do.  I left a picture of our little family with him.

It was so very strange to be leaving the hospital without him.  When Richard pulled up the car, he had a bit of a smile on his face.  I asked him what was up.  Earlier in the week, he had lost a book.  The lady that was taking the money for the garage was reading HIS book (he figured he must have left it at the counter earlier in the week).  It was from a series of “The Nobel Dead”.  He said “I think Alexander helped me to find this book”

The next days that followed were really a blur.  We did what we had to do to plan the funeral.  How do you plan a funeral for a child?  How do you talk about someone that only had lived for 21 months?  We did manage to do it, and I think we did a very good job.  In his short little life, Alexander touched many lives.  The doctors, nurses, other staff, and all that followed his Carepage.  Through his Carepage, I have even met some other neruoblastoma families, that some how came across my page!  I now follow their journeys. Sadly though, many of them have also had to say goodbye to their beautiful children.

The day of the funeral, we were saying our final goodbyes to him.  We asked them to help us open up the bottom of the casket, so that we could put his special socks that Oma had made for him on, and put a few more things in the casket with him.   We got a little laugh from this.  We knew this casket could only be shown open “half way”.  Well, the reason for that is because the other side of the casket is PINK!  So Alexander is in touch with his feminine side for all eternity!   They had also left on his name band from the hospital.  We wondered if that was perhaps, so they could “scan” it when he arrived in Heaven and make sure he was who he said he was?  A little bit of laughter on this very sad day.

The Funeral itself was a bit of a blur.  We did think to have someone record it, so we have that to go back to and listen. The music done by one of my friends was just beautiful, and the sermon by my good friend Fr. Paul, was wonderful as well.   At the cemetery, we were told there was about 110 people there!  We handed out bubbles for everyone to blow.  I wish we had thought to ask someone to take a video or picture of that!  Since we were in the front, we didn’t get to really experience it all, but I was told it was beautiful with the thousands of bubbles being sent up to heaven for Alexander to pop!  We had a wonderful reception afterwards, with so many friends and families.  But, as the day wore on, all I wanted to do was to go home and go to bed and sleep forever.

The next days and weeks ahead were very difficult for us.  Richard went back to work, but I had nothing.  Nothing but a silent house to sit and cry in.

Both Mothers Day and Fathers Day came and went without much fanfare.  Last year we were in the Hospital for both days.  This year it was very hard to “feel” like a parent when your child is in Heaven.

In July, We had a wonderful vacation to California – Alexander was with us in many ways during that trip. (see post from October) https://thecookiegal.wordpress.com/2011/10/01/dear-alexander/

When we came back from California, I decided to go back to work. I stayed at one job for a couple of months, then moved on to another one.  It was soon after I started that job that I found out I was pregnant again!  We had trouble getting pregnant with Alexander and even needed some “help” from modern medicine.  We never thought I would get pregnant as quickly as I did! But, yet, there I was pregnant with a new job.  And then the nausea and morning sickness started!  I was working as a visiting nurse – driving around all day, going in and out of peoples homes was not easy with the nausea!  I also realized I just didn’t like the job, so I gave my notice.  I needed to focus on being pregnant for a while, and just “be”.   I am also not sure if I even WANT to be a nurse any more.  But, yet, I don’t know what I want to do with my life.  Part of me would like to be a parent advocate of some kind, but part of me wants to run far far away from anything in the medical field.

Expecting this new baby has been both exciting and scary.  Scary, because what if this child has cancer too??  I am sure we will always worry about that.   Although, I have been recently saying, either we will freak out at every little sniffle and cough, or go the opposite direction!  I can see us sitting in the ER with the kid having a broken arm or something, and being so calm, that the staff wants to call DSS because we are just TOO calm for the situation!    We will be using the same room Alexander had for the new baby.  We only have one other room in the house, and it would be a lot of work to switch everything around!  Plus, that room has trees painted on the way, and is just perfect for a child.  We have started to go through some of the things in the room.  It wasn’t too hard really.  One thing I am not looking forward too is taking down the “Alexander John’s Room” from his door.   That is going to be difficult.  But, I will take a picture of it and put it in our memory box with many other things.

A word that came up recently in one of my support groups was “cheated”.  I feel “cheated” out of a long life with Alexander.  I feel cheated, that he never walked or talked, or even really ATE.  He never said Mommy and Daddy, I never got to chase him around the house, there are so many things he never got to do.  I was recently reading another blog, and the topic was “Blessed vs. Lucky”, with the focus being on “Blessed”  I wrote a reply, and said how I disagreed with the topic.  Alexander was very UNLUCKY!  He got on of the deadliest kinds of childhood cancer, and despite being the “right” age, he never reached remission and he died.  Many of his friends have beaten their cancer, and lived.  They are very lucky.  Can I say they are blessed?  If so, does that mean Alexander and all the other children that die from their cancer are NOT blessed?

One person wrote a reply to my response, and put a different twist on it.  He suggested, that I look at the time we DID have with Alexander as a Blessing.  Even though he was sick, and did die, we were BLESSED to have him for 21 months (this person lost his daughter at 28 DAYS old)   When I looked at it from this perspective, I felt a lot better.  While, I will miss all the things I will never get to do with Alexander, I am very grateful for all that we DID have with him.  Even though he spent more time IN the hospital than OUT of the hospital, many of his days were filled with laughter and smiles.   He was such a trooper during his treatments.  There were things he did not like, but they X-ray department was always very impressed by how well he did.  There were times when he had to sit on a little block and we had to hold his hands in the air so they could get an x-ray. He usually did not cry, or fight us, he just did want he had to do.  He was a wonderful boy.  For the most part he let the nurses do what they needed to do to take care of him.  EXCEPT for his blood pressure!!!  He would always move just when they were ABOUT to hear it!  He also did not like having his temperature taken under his arm – you would think they were sticking him with a needle sometimes the way he fussed!  It was kind of humorous really.

So, yes, while I do feel cheated in many ways, I know how blessed and lucky we were to have such a wonderful boy in our lives!  He was the happiest kid I knew despite all that he went through!  We enjoyed every day and every moment we had with our boy.  Even though so much of that time was spent IN the hospital, we still found a way to make it special.  We took him on Wagon Rides, blew him bubbles, made him smile.   We tried to treat him like a “normal” boy, which is hard to do when you are covering him up with plastic wrap just to take a bath!  But, we did our best.   He rolled with the punches. Some times, he would be throwing up one minute then reaching for his toys the next!  He was always making us smile and laugh too.

Some times I do wish I held him for one more moment – but would one moment be enough?  I don’t think so – I couldn’t hold him forever, I had to let him go. But really, I do not regret one moment we had one with him, even though all the yucky times.   If God had said to me, I am going to give you a child, but take him back to me 21 months later, I would have still said YES, send him to me!! He was a wonderful son, and I am glad that we had him in our lives for those 21 months.   He was a joy to those he encountered, and I hope and pray that people will remember him, and bring the joy that he had to others.

So, tomorrow, please remember the JOY – remember the Oreos, the Popcorn, the BUBBLES!   Send him up some Bubbles today, and any day you want to bring joy to the world.  Keep the bubbles in your car – blow them out the window when you are in traffic or at a red light.  Watch the reactions, the smiles, you are getting, and know you are spread the love of Alexander.

First Oreo Cookie


All Done!

Birthday Oreo

Why Eat Cake when I can have a Yummy Oreoe?

Sorry, this is MY Oreo!!! None for you!

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1 Year Later from Daddy’s View

Coming up to the first anniversary of Alexander’s death, I have been thinking. People grieve differently.   Nancy and I had a conversation about what was going on with our grief.  Here is how I feel and Nancy will add her side of the story later interspersed though this blog.

I am a rational person and not a very emotional outwardly.  I see Alexander’s passing though my “rose colored glasses” differently that Nancy.    There are the five stages of grief which I seem to have passed thought with very little problem.

Bargaining. I never really bargained during Alexander’s illness.  I did not promise anything that I could not deliver. I did not ask God to heal my son and promise to be a better person. I just hoped that all would work out. When Alexander was dying I did not ask for one more day.  I just accepted the sad truth about what was happening.  I look at the other children who had to go through a long drawn out process before they passed away. Would I have survived a long drawn out process of Alexander dying? Would I have to grasp for straws and hope that all would have turned out okay? I don’t know. I know that the decision to turn of the respirator that was helping Alexander live was very hard.  I did not want to let him go but it was the right thing to do at the time.

Nancy and I had a conversation during Alexander’s cancer treatment about if Alexander were to die. How we would want it to happen.  Not that we thought it would every get to that point.  We both agreed that it would be best for him to die in our arms at home in his room. He got part of the wish he did die in our arms with family around us. This did not make it any less heart wrenching or sad.

Denial.  I have no denial issues.  I was there when he passed away.  Nancy and I held him in our arms. We had a funeral and buried him. I cried when I read the passage that I though would be appropriate to put on the back of his remembrance card.  I can’t deny any of these things.

Anger.   I am not anger at Alexander’s dying. Alexander did nothing wrong.  He was a great baby. He smile and laughed, played, enjoyed being read to and trying to catch bubble.  It was not his fault that he got cancer.  I am not angry at the doctors for not curing him.  I believe that all of the doctors did everything in their power and knowledge to treat Alexander.   I am not angry at myself for any of the decisions that were made.   The treatment protocols were designed by doctors with their knowledge of how treatment is supposed to follow.  Nancy and I followed what the doctors said.  Nancy has said that she feels “cheated”, while I feel “graced” to have been part of his life. My grace is looking to the past and Nancy’s cheated is looking forward a future that will never be. Is it wrong not feels angry about a future that will never be? Since I can’t deny what happened why worry or feel upset or angry about something that has not happened. I feel that anger needs to be focused on something. When I do get angry I am more upset that our new child will get sick like Alexander did and why would I have to go thought this again. But even this thought is quickly put out of my thoughts because we are not there yet.

Nancy gets upset when people say or do stupid things (eg. “God has plans,” or “at least he is not in any pain.” Or “are you going to have more children?”) I let all of these comments just roll off my back and let them go. I have no idea if I am doing God’s plan for me. I am living my life for me.

Acceptance.  I have accepted that fact that Alexander is not with us any more.  I am saddened by this realization. I have accepted the fact that I will not be able to create more memories with Alexander.  I either don’t know how mourn a future that will never happen. Like seeing Alexander walk or talk, taking him apple picking, going to school, or any of a thousand of other things that we may have done together. This type of acceptance does not mean that I don not get sad when I think about Alexander. I just means I know he is gone from my life and all of the people that he effected.

Getting up out of bed every morning.                                                                            Some times wonder if I care. How can it be so easy to get up and do things every day. I lost one of the most important parts of my life last April first. I get up and start the daily activities.  On Monday this includes doing the laundry, taking out the trash, cleaning the floors, and other little things around the house. I sit and play my silly face book games all the time. I get up and I walk around the block without Alexander. I go food shopping with Nancy but without Alexander. Last week with the perfect weather, I worked on my garden and cleaning up the outside of my house without Alexander. Is that living? Do these things make me happy? Or are they just fillers in my life to take up the space where Alexander should be?

Nancy gets up set at me for getting up.  “don’t you understand how hard it is to get up out of bed,” she says, “ I would not get up if I did not have to go to the bathroom or eat something.” “Why don’t you just stay in bed?” she questions me.  I just can’t stay in bed and feel sad. I need to have the house clean in order to stay sane. I don’t want to be depressed. I have been down that road once and don’t want to go back there.

It has been said that men can compartmentalize life very easily. Whether it be work, home, play, or any other thing. Have I done this with Alexander? Or Nancy? Or my Family? Or other people in my life.   I look around the house and see all of the pictures of Alexander. Am I really seeing them or just glancing over them.  I can make my self sad every day by going over to cemetery and talking with Alexander or by pressing on Sammy the seahorse’s belly and thinking about how he loved that toy. But I don’t do that. I do visit Alexander at the cemetery and blow bubbles some times I cry some times I don’t.

Nancy is upset at my family for thing they have done either incorrectly by her standards or not done at all. I am less concerned about their actions than my own actions.  Nancy’s family is very close while my family is very distant.  If Nancy does not speak to her mom at least five time a day, well … If I speak to my brother or sister five time in half a year we are doing good. Nancy has lots of extended family in her life coming to be with her on this sad anniversary .  I wrote a letter to my extended family last January to try to reconnect but never mail it.

So where I am going with all of this?? I don’t really know.  I just miss my beautiful boy.

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