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March 1, 2013

on February 26, 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.



7 responses to “March 1, 2013

  1. jane mulcahy says:

    all there is to say here is yes Nancy…YES YES YES to everything you have said here

  2. Sue DeBassio says:

    Dear Nancy, i cry for you as i write this… you are right, it is a process and it totally sucks and grief blindsides you when you least expect it. At the fundraiser you had a few weeks ago, when i saw Julia, i was thinking of how she was coming up on the age Alexander was at diagnosis. I was thinking it must be a weird time for you and Richard. It must be hard to not worry about Julia every time she acts like Alexander did before he got sick. I am glad that she got the ultrasound scan and it is good. I am sorry to hear that sleeping is so hard and so is getting out of bed. I will pray that it will get better with time. Please know that we think of you and Richard and Alexander and Julia often and we pray. love, sue

  3. Erin says:

    Though Alexander was never old enough to “really have friends,” YOUR friends will never forget him. I was at Walmart today with Evan and we saw a huge display of bubbles– I don’t think I’ll ever be able to see bubbles again without missing Alexander. But I took the moment today to talk about him for a minute. I hate that you are suffering (and that you will for the rest of this life), but there’s no excuse you have to give or apologize for not being “positive”… I just hope you know that you are not alone. I continue to hold you close in prayer. (((hugs)))

  4. Marie says:

    Thank you, Nancy, for sharing your horrible, yes, they are truly horrible, moments with me (and, others, too, of course). I was at Floating earlier in the week. Michelle is getting ready to visit with her daughter. She had told me that at the Noise event. She’ll get it done, but what the cost? What the reward? I’m still trying to figure out how she and her husband manage to allow Troy to grow and be his own spirit, even though that spirit was twice as big when it started in conception.

    I haven’t told you how successful Noise night was. It was a great testament to the energy of those who have known cancer due to their children, as well as from those who know it as a friend of that family. It would have been perfect if there was no need for such, but since there is, it was a wonderful event. (I felt for Richard. He, obviously, was sick.)

    Hope tonight is better. Have you tried Netflix? Some of those English things are so much better than almost any of our television. I was thinking that you could use them as drugs for sleep.

    Love, Marie

    Marie Nader ConKerr Cancer Massachusetts Coordinator; Board Member 978-448-2636

  5. Karen Capucilli says:

    I found so much to relate to in this post. This is especially true because our children were very you g when they passed away, and we both had a child who does not have cancer. I worried the same way about my Hannah and also my Noah. I hope it gives you comfort that I do not worry about their health as much as I once did. I have watched them get sick and get better, have dicey moments in the ER, etc and come out the other side as healthy children. .

  6. tersiaburger says:

    My daughter was ill for 38 years. She suffered pain and indignity for 38 years. In the end I prayed for her suffering to end. I am grateful for every second that I had with her. I am so sorry you did not have more time with Alexander. Hugs

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