Now THIS is Going to be Fun!!!

Among our two children, Matthew was definitely the money-saver.  In fact, we joked that he was a money hoarder.  If Megan gets money for her birthday, she's begging to go spend it.  Matthew would hold on to it until he found something really special that he wanted to buy.

Its for that very reason that Matthew had $350 in his bank account when he died.  Steve and I were recently discussing closing his bank account and of course the decision of what to do with the money came up. 

I immediately recalled the day a few weeks after he was diagnosed when we learned of another girl at his school who was diagnosed with cancer.  She was being treated in Spokane and the school was coordinating a fundraiser for their family.  Matthew asked if he could donate all of his money to the girls fundraiser. 

For those of us who knew Matthew, that isn't surprising.  He was a very generous, thoughtful boy.  Steve and I both agreed that Matthew would want his money to go to another child battling cancer.  I reached out to the Child Life Specialist at Kadlec (where Matthew received his chemo at home) and asked her if there was a child who might need a pick-me-up.  She immediately said yes, that there was a little girl who could use some fun and gave us some of her "likes."  We took it from there and hit the stores.

Tomorrow we get to deliver this to her at the hospital!  I know in my heart that Matthew will be with us when we go to visit her and I know beyond a doubt that he would approve of our decision.  I can't wait to see the expression on her face when she sees her gift.

With Matthew in my Heart, Nikki 

 

S-I-X Months Later....

I must sound like a broken record when I say "I can't believe he's gone."  But I really can't believe he's gone.

Half a year has passed since Matthew graduated.  Yes, graduated.  It sounds much nicer than "died"-don't you think?  Our medium, Michael likes to say "graduated."  I think it has a nice ring to it. 

Half a year.  How is that even possible?  How have we been living our lives without him for half a year?  Sometimes it almost feels like a betrayal.  I know life goes on and we have to keep on living....but sometimes when I think about us going on, living this life without Matthew, it just doesn't seem like we should even be able to go on.  It's almost like we're dishonoring him by the fact that we're able to go on.  My brain knows that this isn't true, it's just one of those crazy grief thoughts that goes through your mind.

Today was a hard day.  I always dread the 5th of each month, because it just marks the passing of more time with out my boy...but today really hurt.  There's just something about the half-year mark that seems so BIG.  Six months ago seems so far away.  So long ago.  And now we're closer to one year than we are to the day he died.  Again, more crazy grief thoughts.  Can you imagine what a day in this mind is like?  I know...scary.

Once again, I was reminded today of our amazing support system.  Lots of texts, a beautiful plant from a fellow DIPG family and love from around the country.  I really do appreciate the support and understanding...and it really does make a difference.  These days are lonely, and it's nice to be reminded that we aren't alone.

That's all for now...thank you for being patient with this rambling post.  I promise something less crazy and more coherent next time.

With Matthew in my Heart, Nikki

Spring Blues

I can sum up the last few months with the following:

January- sucked.
February- didn't suck bad at all.
March- sucked worse than January and February.
April- sucking the worst of all.
Side note- if you're judging my repeated use of the word "suck" I would kindly suggest that you leave now.  Really, I don't need any judgment in my life.

The one absolute I've learned since Matthew died is that grief makes no sense at all.  The days that you think will be horrible are not so bad, and the days that you think will be great turn out to be really hard.  It's a completely unpredictable ride.  The sheer unpredictability of it is exhausting and for someone who appreciates a sense of control in my life....well, it doesn't make things easy.

All winter long, I told myself "spring will be better."  The sun will shine, the temperatures will get warmer, flowers will bloom.  I'll start exercising regularly.  How could that not bring some happiness? 

Winter and grief go together really well.  It's cold and grey.  You can wear yoga pants and sweats and stay indoors for days at a time and it's ok.  You can eat comfort food without guilt, because when Spring comes, you'll be exercising regularly.  I didn't feel like we were necessarily missing out on anything during winter.  Sure, there was no basketball...but it didn't sting too badly.  We skipped the Silver Mountain ski trip because we have another trip planned for Spring, but even that didn't bother me too badly.   

As the days got longer and the sunnier, something strange happened.  One particularly warm and sunny day, Megan, Steve and I walked to the frozen yogurt store near our house.  From there, we walked to the meat market and picked up some steak for dinner.  On the way home, we passed the park and it hit me.  It was a perfect Spring day and Matthew should be here to enjoy it.  It's hard for me to describe, but it's those "perfect" moments where Matthew's absence grows exponentially and the grief swallows he whole.  As I drive home every day, I expect to see all the neighborhood kids outside playing...and Matthew is missing.  When I look outside, there is only one child playing-alone-without her brother.  

One of the widow's in my brain tumor group described this as the "oh f***, he's REALLY gone" phase.  Yep, that sums it up really well.  That thought is like a phrase stuck on repeat in my head.  I literally think it multiple times a day.  It's like Groudhog Day gone horribly wrong.

There are still those moments where I'm able to wrap our experience in a pretty package, complete with a bow.  Those moments where I can convince myself that even though Matthew was only here 11 years, he had a wonderful life.  Those moments where I can look back on memories and laugh and smile and just appreciate them for what they are.  Unfortunately, right now, there are more moments where the package falls apart and I'm just sad. 

As I usually do, I am coming back to this post about a week after I started it.  In that week, the tides have once again turned and things are looking just a little brighter.  Even with that, I walked into Matthew's room last night to close his window before bed and it literally took my breath away when it hit me once again that he's really gone.  Five months later, it still takes my breath away.  The other evening, we were going down to the Little League fields to watch a game (Steve is coaching again this year) and as we were getting ready- the thought popped into my head "I need to put sunscreen on Matthew."  Just when you think you are doing ok, you are reminded your son is never coming back.

As our first Easter without Matthew approaches, I can't help but miss him a little more this week.  When we went shopping for Megan's dress, I didn't have to worry about coordinating the colors with Matthew's clothes.  We won't need to hard boil 40 eggs this year so each child will have plenty to decorate.  There will only be one child in front of the tree for Easter pictures.  Our annual Easter egg coloring selfie will be missing one.  For the first year ever, we purchased a memorial Easter Lilly at church...because we have someone to memorialize.  I'll still make him an Easter basket (and donate all the gifts as we did with Valentine's) because it hurts too much NOT to make him one.  We'll shake up our routine, because somehow that seems to make things less horrible.   We'll get through it and then check another "first" off the list.

So, what does five months fee like?  Isolating.  Lonely.  Sad.  Breathless.  Sometimes hopeful.  Overwhelming.  Discouraging.  Confusing.   Sometimes ok.

With Matthew in my Heart, Nikki

I Want a Do-Over

I want a do over.  Ideally, my do-over would include Matthew being cured of DIPG, but I'm not even talking about that kind of a do-over.  I want a do-over of the last 2 weeks of his life.

A wife in our on-line support group posted a question last week about how to handle all of her husband's family wanting to spend their time with him in his last days and her trying to balance that with her need for privacy and his wishes for his final days.  My reply to her was swift and sure, encouraging her to do what SHE felt was right.  No regrets.

It got me thinking though....about regrets.  I have very few regrets about our time after Matthew was diagnosed.  The few regrets I have are simple.  I wish I had taken more pictures and video.  I wish we had postponed his Make A Wish trip so that he was feeling stronger and was more able to enjoy it.  That's it, until we get to the last weeks of his life.

I don't have regrets about how he was treated medically in the last weeks.  My brain and my heart know that he was comfortable and that we took care of him better than any hospital could have.  Our choice to keep him at home with help from hospice was the perfect choice for him. 

In my do over, I would ask for more help.  We had so many people offering to help us but I didn't know what we needed.  I know that sounds odd, but it's true.  I would lean on my friends more for support.  I would be more firm about who was involved in his last weeks.  If you haven't been involved in Matthew's life for the past 11 years, this is NOT your golden ticket to show up now, once his days are limited.  Keeping the peace would not be my priority.

Regrets are a funny thing.  Whose to say that if I had a do-over, 4 months from now I wouldn't still have regrets.  There are no guarantees.  My feeling is that no matter how perfectly I thought I did things, time would always change my perspective and I would always want a do-over. 

What I wouldn't change about Matthew's last weeks are the love that we shared.  Much like when he was a newborn baby, we took complete care of him.  That involved getting up a few times each night to give him meds and re-position him.  That left us tired during the days.  After he died, I found these pictures on Steve's phone.  I never knew that he had taken them.  Now, 4 months later, they make me happy and sad all at the same time.  Happy because I was privileged enough to be there taking care of him during that time.  Sad simply because he's gone.

 

 

The truth is, I'll never get a do-over.  I know we did the best we could at the time and as far as Matthew was concerned, it was perfect.  That's going to need to be enough for me.

 

With Matthew in my Heart, Nikki

Inspiration

I've been thinking lately about inspiration.  Many people have told me that our journey has inspired them.  Countless friends (and a few strangers) have shared with me how their lives have been positively impacted by Matthew and how our family chose to travel this journey.  People have shared very personal struggles and told me how because of Matthew, they are inspired to keep fighting their own battles. 

I want you all to know that when you share these stories with me, you inspire ME.  I don't want you to think that this grief experience is not difficult.  It is.  There are days that I just don't want to do this any more.  But then I'll receive a card, or an email with a message of how our story has inspired someone else...and it reminds me why we keep going, and that we aren't alone. 

Some of you know that Matthew was diagnosed at age 2 with asthma.  There were times during his life that his asthma was difficult to control, despite the care of an excellent asthma specialist and our wonderful pediatrician.  He was hospitalized once and missed many days of school in his younger years.  By the time he was diagnosed with cancer, his asthma was very well controlled (ultimate irony) and he rarely had exacerbations.

Adam is a friend of ours who is a firefighter/paramedic and works with Steve.  He began climbing in the American Lung Association "Fight for Air" stair climb in Washington several years ago.  We always supported him in his climb, as we know first hand what it's like to have child impacted by lung disease.  Last year, he won the climb and dedicated his win to Matthew.

On September 30th of this year, I received a message from Adam.  In part, it read:
This year the Fight for Air will have a 40 flight climb, an 80 flight climb, a 120 flight climb, and a 160 flight climb. I was given permission from the event organizers to run each event, for a total of 400 flights. I'd like to climb all 400 for Matthew, if that would be ok? I'd like to give back a little of the inspiration to him that he has given to all of us... to let him know that we are all pulling for him, and that no one fights alone. 

That my friends, is what inspires me. 

This Saturday we'll be rooting for Adam as he climbs wearing the medal from last year and I know Matthew will be smiling down from Heaven.

 

 

 

 

With Matthew in my Heart, Nikki

Bitter Angry Grief Lady

This post was originally started on December 17th and then I walked away from it.  I tend to do that.  I'll think of something, start a post and leave it for another time.  Today in church, the sermon was titled "Overcoming our Anger."  That got my attention. 

What's interesting to me is that I wasn't angry during Matthew's treatment.  I wasn't angry at God, or anyone really.  There were moments that I questioned "why did this happen to us", but I don't feel like I dwelled too much on it. I recall several times wondering why I wasn't having those feelings- Steve had experienced some of it, but it just never happened to me. 

The first time I got really angry was in clinic.  Is was September 30, 2013.  We had just participated in the Run of Hope in Seattle the day before and we were in clinic for an MRI to see if the avastin/irinotecan were working to slow Matthew's tumor at all.  Matthew and Megan were watching TV in an infusion room and we were in the nearby conference room.  Cory, Steve and I looked at the MRI images and talked about what we saw.  As the reality of "it's not working" set in, I slammed my hands down on the table and began to yell.  "NO, not now, not my son....this can't be happening."  I grabbed the nearest thing to me, which happened to be a small calculator ad threw it at a wall.  No one said a word, or told me to stop.  I only noticed later that Cory moved my phone away from me so I couldn't throw it also.

Cory told me a story once about a mom who tore apart the bathroom outside of the clinic waiting room.  She had received bad news and proceeded to tear the paper towel holders off the wall.  At the time she told me this, I thought "wow, I can't imagine ever being that angry."  On September 30th, I understood that mom's anger. 

Anger is that feeling we go to when we're protecting something sacred.  Nothing could more sacred than Matthew's life.  So your right...I'm DAMNED angry.  Who am I angry at?  I don't know.  I don't feel like I'm angry at God.  God gave us that perfect boy to love for 11 years.  How could I be angry at Him for that?  Because he took Matthew away?  I still don't know how I feel about that whole concept, so I don't think I'm angry at God.  I really don't think I'm angry at a person.  Rather I think I'm just angry at our situation.

I endured fourteen months of hell, knowing that my child was going to die, only to start phase two of hell eight weeks ago.  I have every right to be mad.  I watched helplessly for fourteen months while trying to make the best of every moment- to memorize every single day of our time together, only to lose my son.  I pushed aside the future and tried to live in the moment...only to get screwed in the end.  You're right I'm mad.  I held my son in my arms as he died.  How could I NOT be mad?

I'm mad at this awful disease and what it did to my son.  It took everything from him.  Everything.  And we were forced to watch.  We were helpless.  All we could do is love him through this.  So yeah, I'm angry.  I'm angry for us as parents, for Megan who lost her best friend and for Matthew's friends who miss him too.  I'm angry for our families and what they've lost.  I'm angry for us all.  I'm angry because I can't fix this.  I can't bring him back.  No matter how angry I am and no matter how mad I get, it won't change a thing...and that makes me mad too.

I've come to the conclusion that it's ok to be mad.  It's not ok to let that anger take on a life of it's own.  Anger is a part of the tool kit.  It fits right in with yoga pants, vodka, excess calories and the F-word.  Yes, they all have their place in the grief tool kit.  I think that we've done a good job of channeling our anger into action in ways that help other people.  To me, that's where my anger belongs.  I can't deny it- but I can use it for good. 

With Matthew in my Sometimes Angry Heart, Nikki

 

10/20/13- I am angry that this is our last family picture with Matthew in it.

The Rakes

There are moments that you expect are going to be hard.  The 5th of every month.  The first holidays.  Going back to Children's for the first time.  There is so much anticipation associated with those events...so much hype and emotion, that they often aren't as bad as you anticipate.  And then there are the rakes.

Another mom explained the rakes as those moments that slap you upside your face out of nowhere, like stepping on a rake that you didn't see on the ground.  The rakes take your breath away.  Actually, they do more than that.  They stop you right in your tracks....your heart skips a beat.  You are caught completely off guard.  There no preparing for the rakes.

The rakes have been non-stop recently.  Earlier this week I heard something about creatinine levels on TV and immediately thought "Oh, I need to call Cory to see if Mathew's creatinine level came down with his last blood draw."  The next day something made me think of a friend of Matthew's who was going to move to Oregon.  I thought "I'll have to ask Matthew after school if he moved or not."  It's as if I actually forgot that he died for a moment...and that moment that you remember he's gone- THAT is the rake.  The breath that's taken away is followed by a deep sigh...and tears.

For Christmas Steve got me a gift card to a car wash.  The inside of my car hadn't been washed since before Matthew died...and it showed.  Last week I took my gift card, and filthy car, to the car wash.  It looked so nice and clean as it rolled out of the car wash and it was shining as I sat down inside.  And then it hit me.  The crumbs that were on Matthew's side of the car...the candy wrappers...the finger smeared windows- it was all gone.  I'm pretty sure I was the only one who left the car wash sobbing that day. 

As I was cooking dinner this week I was thinking about Matthew's friends and his classmates.  It hit me then that they are 5th graders and will go to middle school next year...and I won't see them at school any more.  My heart sank.  They are a connection to him- and they are going to middle school....and Matthew isn't.

Today I opened up my jury summons.  Thankfully I've been excused since Matthew was diagnosed.  I was completing the questionnaire and I got to the "number of children" question.  I was frozen.  I just stared at it....and then lost it.  Huge rake.  After I contemplated the definition of purgery, I decided to write "2."  Under the ages I wrote "9 and deceased."  Then I fixed a drink. 

This week of rakes has been brutal.  One or two is manageable, but it's like I can't catch a break this week.  I allowed myself Wednesday to just "be" while Megan was at school.  No expectation for that time, no commitments- just a Lifetime movie and yoga pants.  I don't know that it helped anything, but I felt like it's what I needed for just a few hours.  I'm told that the rakes get better with time.  There are less of them and they don't hurt quite so bad.  For now, I'll continue to duck and swerve and hopefully dodge just a few of them.

With Matthew in my Heart....Nikki