Think Before You Speak

I am sure you were all told growing up “if you don’t have anything nice to say, don’t say anything at all”.   I would like to add to that “if you have never walked a mile in someone shoes don’t say anything more than “I am Sorry” “

When I am talking with other parents who have lost their child there is often a common topic that comes up “Stupid S*** people say when you kid has died”.  I am amazed by some of the things I have heard that people have had said to them:

• At least you have other children (as if another child can replace the one that was lost).
•  You can have other children (no – maybe someone CAN’T have other children!)
•  At least they aren’t in pain any more (true, but they are also not ALIVE anymore either)
•  They are in a better place (what better place is there other than MY house?)
•  I know just what you are going through – I lost my “fur baby” to cancer (really!?! Your comparing my kid to your DOG?!)
•  God must have needed another Angel (because he just couldn’t MAKE one?)
•  God must love you a whole lot to give you a share of His Cross (I would rather God hate me then!)
• God gives us these challenges to make us stronger (ummm…really?)
•  Things happen for a reason (I think I hate this one the MOST!  Tell me the REASON my Alexander died!  Tell the family of the little boy who died because of the marathon bomber the REASON he died and that his sister lost a leg, and that the mom has a head injury!)
•  It has been a year since your son/daughter died.  Aren’t you ready to move on yet?
• Your STILL grieving?

 

Often when a child or family member is going through a illness, the family will set up a web site to keep people informed.  We did that for Alexander.  For me, it was very helpful,  I was able to decompress at the end of every day, and I didn’t have to repeat the story over and over again.

However, despite the fact that I was VERY open with what was going on, some people felt they still needed to know MORE. They would ask questions – some of which had already been answered, some that they could have looked up themselves.  On occasion, I would give “definitions” of the medical things to help people understand.

We got all positive comments, and most of the people who read our Carepage were friends and family, or friends of friends.  On occasion, I would have another Neuroblastoma mom follow Alexander’s stories – and I followed their child.  How we found each other I may never know!

Some people go beyond the Carepage.  Some people have contact with the news, and are VERY public with their journey. This can be good and bad.

I am amazed though following other kids journeys, kids whose stories have been picked up by the local news, at the horrible comments some people will write!  Not so much on the Carepage, but in the comment section of the news article.  So, these are clearly coming from people who don’t really “know” the family, and based on the comments have never lived through such a trial.

One story I follow is a little girl whose life will be very short, and the family is aware of this.  To make her life special and meaningful, they have created her own little “bucket list”.  Dance With Daddy, be in a Wedding, have Tea at the Plaza in NYC, trips with the family.  There was a nice story done by their local news, then a major magazine took it as their own, without the families permission. Many of the comments were encouraging, but some were horrible.  I read things like “you should just take your daughter home and love her” (as if they aren’t doing that?)  “You shouldn’t take her to Disney World, you should take her to Lourdes so she can be healed” (because God is ONLY at Lourdes and couldn’t heal her some place else?!)  “you are doing this list for YOU, not for her – she wouldn’t remember any of these things if she lived” (true, she is so young, but then THEY will have the memories – instead of a bunch of –‘we never did….’

Another story I was following about a little girl with a brain tumor.  Also, a story that was picked up by local news.  The parents put on their Carepage “we appreciate the suggestions for treatment, but we are very confident in our doctors”.  They had gotten “advice” from strangers – “you should go to this hospital or that….you should try this herbal medicine”.  At one point they posted they were taking her home because there was nothing more that could be done for her. Someone wrote on their face book page “I don’t understand why they don’t TRY radiation again – what harm can it do?”  Yes, lady, you DON’T understand….

I read an article about a girl who had gotten a long-awaited heart transplant.  A wonderful thing – I am a big supporter of Organ Donation, I hope when I die I can be one. But someone wrote a comment “God ALLOWED this miracle to happen”  I wondered how the family of the donor felt about that comment.  Why didn’t God “allow” their love one to live?

So where I am going with all of this?  Well, I just ask that if you do follow care pages, news articles, etc, and feel compelled to leave a message, PLEASE only leave a POSITIVE one – tell the family you are praying for them, thinking of them, sending up good wishes.  Keep it at that.

Before Julia was born, I asked people for BOTTLE feeding advice and to please keep your breastfeeding advice to yourself.  Well, a few people still felt the need to share some breastfeeding “advice” even though I had made it clear, that was not the choice I was making.  I was pretty put off by that.

I recently posted that we are pregnant and that we found out that the baby is going to have some problems.  I got a lot of  “Oh, those tests are NEVER right” and “they told me my child was going to have xyz and they are fine”.  Well, good for you and your kid!  But, they are 99% sure my kid IS going to have a problem. Yes, tests can be wrong sure, but I wasn’t looking for advice, I was looking for SUPPORT!!

You may have a mind full of advice, and opinions, but if you don’t know these people personally, keep it to yourself.  And if you DO know them personally, talk to them about it in private.  Not for the world to see.

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.

Some thoughts from the Dad’s View…..

My mom gave me an early birthday present.  A Hard Cover book of the final “Chapter” of Alexander’s Journey from his carepages.  (she had already given me the 1st year)  Many of the final entries were from Richard’s point of view.

There are many blogs out there that are from grieving moms, but just a few from the dad’s point of view.  Perhaps it is because men are “suppose” to be strong and not share their feelings. Of course that is a bunch of BS, and men DO have feelings!  Here are a few blogs that I follow from a Dad’s point of view. If you are on Facebook, please also check out this page, “A Day of Yellow and Gold for Cole“.  My friend Tony, shares a lot of his feelings here on the lose of his son Cole.

 

My Family Has Cancer x2

http://myfamilyhascancerx2.blogspot.com/

Off the Diving Board

http://offthedivingboard.wordpress.com/about/

Colin’s Corner

http://colinstuart.blogspot.com/

Grieving Dads Project

http://www.grievingdads.com/

Help us get the White House to GO GOLD in September!!!!

Last October the White House Turned “Pink” in recognition of Breast Cancer Awareness month.  This year, we – those in the fight against Childhood (STUPID) cancer, would like to see the White House go GOLD.  However, we can not just go and shine our lights on the White House.

An official online petition has been set up to request the government to consider this.   They won’t even consider it until they have 25,000 “signatures”.   (for future petitions it is going to be 100,000!)    They DO give responses once the required number of signatures has been obtained.  Someone even created a silly one to have a real “Death Star” (ala Star Wars) and THEY received a response!    (thankfully in this case, the government decided wisely and will not be using public funds for such an endeavor)

Recently on Facebook some kids wanted to get a puppy – and they were able to get 1 million “likes” for a dog!!  Aren’t the children fighting STUPID cancer worth at least that, if not more? We aren’t even looking for that many right now, although more would be wonderful!!

Please consider signing this petition – then sharing it on Facebook, Twitter, e-mail, etc!   We only have a few more days to get the required number of signatures!

https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX

Here is a blog from another mom. It is NOT “G” rated, but it speaks to the truth of the devastation of childhood cancer

http://rockstarronan.com/2013/01/24/a-gold-white-house-i-will-not-stop-begging-or-crying/

Thank you!

Guest Blogs!

Recently, on the Floating Hospital for Children’s Facebook page, they had a picture of a young woman who had delivered some “Smile Bags” for the children.

From her website:

My Inspiration

For Project Share A Smile, I chose to help young children in local hospitals because three years ago I was one of those kids. I went to the Children’s Hospital at Dartmouth for surgery after being diagnosed with a heart complication. The only thing I remember about that day was how miserable I was. I felt so bored and unhappy. Through my project, I wanted to turn my negative experience into something positive for someone else. I started Project Share A Smile in order to brighten the days of children in hospitals, just like I once was. If I can make one child smile, then I have accomplished what I set out to do.

I thought this was a great idea and wanted to make a donation to her.  I sent her an e-mail and explained that while Alexander had not received one of her bags, I thought it was a great idea!   We exchanged a few e-mails and I told her about Alexander.  She asked if she could blog about him!  Of course I said YES!  Some people were having trouble with the link, so if it does not go right to the link, then look on her home page for where it says “blog”. She did a great job!

http://home.comcast.net/~tnlevesque/site/?/blog/

 

A few months ago, I was looking up new blogs to read and came across one called “Fearless Formula Feeder”.  At first glance I thought it was something by those nut jobs that think that breastfeeding is the ONLY way to feed you baby, and if you don’t you are a bad mother!  Well, this site was just the opposite!  It was a site to support those that choose not to breastfeed or that are unable to breastfeed for whatever reason.   They have a guest blog on Friday nights and I wrote a piece for them.  I really liked what they had to say in their introduction of me.

http://www.fearlessformulafeeder.com/2013/01/fff-friday-things-were-working-fine-but-i-hated-it/

 

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!!!!!!

A bearable day

So I made it through the second Christmas without Alexander.  It was an okay day with happy moments.   Julia slept in which was lovely, but then I woke up at 7am thinking I heard her, and I couldn’t fall back to sleep.  My brain was just going – thinking about how much I missed Alexander.     When Julia did get up, we opened presents with her.  She was VERY excited by them which was a lot of fun to see!   We went over to my mom’s house and opened presents with her and my sister.  It was nice.   Richard’s  mom and sister came to join us for lunch.  Julia did NOT nap at all during the day but was still very happy!  Later in the day we went to visit my Aunt and Grand Aunt.  Julia had a very nice visit with them. My Grand Aunt is 93 years old and has good days and not so good days.  Yesterday was a GOOD day.  Julia sat with her for quite a while and they had a nice visit.  My Aunt gave me a present for Alexander – it was a beautiful Crystal Angel!  I will be sure to put that in a special place for all to see.

Julia took a brief nap in the car on the way down and back, but never did have a proper nap!  Thankfully she did fall asleep pretty quickly once we came home.  The mid part of the day I was very happy, and had a very nice time.  By the evening however, I was feeling sad yet again.

A snow storm is heading our way, so it was decided that the plans with Richard’s family would have to change.  We had planned on getting together with them on Thursday, and I took the day off from work.  However, with the snow, it was better to do it today, and I had to work. Richard took Julia off without me.  He did take pictures and it looked like they had a very nice time.

As I have read the posts and blogs of families that have been at this “Christmas without their child” thing longer than I have, I see I am not alone in my feelings.  People that are working on their 5th year without their child, said that it wasn’t any easier – perhaps harder!

Some might think that this year would be “better” for us because we have Julia.  But really, I think it was harder because we have Julia.  I was missing Alexander so much – wishing he was here to teach Julia about presents.  Wishing we could have been baking cookies to leave out for Santa.  But he wasn’t here and never will be.  We will make these new memories with Julia as she grows older, but there will always be a hole in our hearts that will never be filled.

So over all – it wasn’t a bad day, it wasn’t a good day.  It was a bearable day.

Not the end of the world afterall!

So it looks like the world won’t be ending today after all!  Oh well such is life!  Take a moment to PAUSE and be grateful for all that you HAVE – your health, your kids, a job (even if it is a crappy job!).  Say some prayers and send good thoughts for those that are suffering – the sick, the homeless, those in the military that can’t be with their families this year.  Remember those families that are spending Christmas without their loved ones – especially those that it is their first year.   Worried about baking all those cookies? Don’t – who cares – you don’t need the calories anyway!  Worried about wrapping all those Santa Presents? Don’t – have Santa write a note telling the kids he is “going green” and not wrapping presents this year (Santa never wrapped his presents in our house – just mom and dad)
Wishing everyone a Merry Christmas, and a bearable one to those that are hurting!

Beyond anything I could imagine…..

When I first heard the news that there was a shooting at a school, I quiet honestly didn’t listen to hard.  I was going about my day.  But, as the day went on and more information came out I did start to listen.  When I turned on the news, I could only watch for a few minutes because I was getting sick hearing that is was CHILDREN that had died.  Not that the adult lives taken were any less important or signficant – but as the parent as a child who has died I started to feel for the parents of those precious children.  When I was going out later that I night, I heard that they hadn’t even removed the children from the school yet, because they were waiting to identify their beautiful little lifeless bodies.

I thought about our last moments with Alexander.  As you know, it was very sudden and traumatic. However, unlike the parents of these children, we DID get to hold him – we got to say good bye to him. We got to pray with him as he took his last breaths.  These poor parents did not have that chance!!  They had to wait!  I can’t even imagine that!  It is hard enough to lose a child – but to not be with them as they lay dying is just so tragic.  My biggest fear for Alexander was that he was scared when he was dying.  I did come to peace, that he was already with God when they were working so hard to save his life.  However, these children – the fear they must have faced when that man came into their classroom, is beyond anything even want to think about!

As often happens in the wake of a tragedy like this – people voice a lot of opinions. As I head someone one say on the radio today, the internet has given people the “freedom” to speak more freely – often anonymously through comments  – but not always.  I have heard =about the need for “gun control” (the guns he used were bought and owned LEAGELLY – he used them ILLEGALLY!) – “That is why I home school my children” (okay – so then maybe you should lock them in your house all the time because shootings have also happend recently at the mall and the movies!) “it is because we took God out of the schools” (tell that to the parents of the Amish Children that were slain at their school – I am sure THEY had prayer in school!)  and yes, even someone compared this tragedy to the “tragedy” of all the abortions that happen every day, but never make it into the news. (Now, I am very pro-life – but now is neither the time or place for such a discussion – or even a time to make that remark!)

The one topic you DON”T hear about a lot right now is that of Mental Illness – the man that did this was clearly mentally ill – perhaps in the days/weeks ahead, more will come out about that – perhaps there were “signs” of his illness – perhaps not.  I don’t know – but we need to STOP making mental illness such a “secert” disease and talk more about it – not make it so shameful – because like other diseases, it IS a sickness!  I am no way going to excuse this man for what he did – but perhaps if had gotten HELP this horrible thing wouldn’t have happened!
But, now is really not the time for any of these topics.  Now is the time for supporting those families in need – for showing them love and compassion, while respeciting their PRIVACY!

You NEVER get over the loss of a child – and as I said earlier, to lose a child in such a horrific way, is just unimaginable.

These families will be forever changed – and people are going to SAY a lot of things to them.  I found this blog, that gives some good suggestions of what NOT to say and what TO say to people in a time of grief.

http://www.missfoundation.org/professionals/articles/effective

Of course the best thing you can really say – is just to say “I am Sorry” and then keep your mouth shut!
Praying for all those involved in this terrible terrible event.

Tough Days

People told me that the second year is harder than the first year.  I couldn’t imagine that could be true – but yet, I am finding it to be very true.   The first year without Alexander was such a blur – I was just so numb most of the time.  Of course I was pregnant with Julia so I was also sick for a good part of that time!   Every time I had my “morning sickness” – I wondered if that was how Alexander felt most of the time!

As I mentioned in a previous post, I have started a job at the mall.  It is a fun place to be – but lots of moms and dads come in with their children.  I interact with the children, and ask how old they are.  Whenever I hear “2 or 3″ I get sad thinking about Alexander.  Wondering what he would have been like had he not died.  Perhaps I will stop asking….

I use to love Christmas – I loved to decorate my tree!  I would get everything out right after Thanksgiving!  Now – it is just all so sad to me.  Alexander had a wonderful 1st Christmas.  But, his second Christmas he spent in the hospital.  He was recovering from a major surgery as well as yet another line infection.   An Angel Family brought breakfast into us, and Santa came to visit.   My mom and sister came on Christmas Day and we had a nice meal that they brought in.  Richard’s family came a few days later – but because of the rules, we couldn’t have more than 4 people in the room at a time, so everyone had to take a turn visiting.   Things were made as nice as possible, but it is just wrong and sad to have to be in the hospital for Christmas.  We didn’t know it then, but it would be his last Christmas with us

Last year at this time, our friends son Cole, went into the hospital for the last time.  He died on January 20th.  His last Christmas with his family was in the hospital.  Again, just wrong.

Last week was the 1 year anniversary of another friends daughter going to Heaven, and today another.  Another friend spent her sons 16th birthday without him as he died earlier this year.  Someone else remembered a surgery for her daughter who would die not long after.  I know others whose children’s “Angel Dates” are approaching.   It is not an easy time for any of us.

If I could crawl into a hole right now I would, but I know I can’t.  I didn’t really care if we decorated or not for Christmas this year, but Richard took everything out.  I did decorate the tree with Julia and talk to her about each special ornament that we have.  It was hard though putting up Alexander’s special ones.  I had made him one that said “Alexander’s First Christmas” on it and I put a picture of him inside of it.  I had intended on making him one every year.  Because he was in the hospital, I never got around to making it  for the 2nd year – and now we have no more to make for him.

So – as you go about your shopping and being busy this season, please take the time to STOP and just ENJOY life – enjoy your children.  Don’t worry about getting all the cookies baked, or the presents wrapped.  If you are stressing about anything – just STOP and be Thankful for all that you have.  If you come across a “Grinch” say a little prayer for them, because they might not have a heart that is too small, but rather a hear that is BROKEN.

Alexander’s First Christmas

Alexander’s 2nd Christmas