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

What I Wish I Knew Before my Son was Diagnosed with Cancer

Another mom who I've met through this journey is doing a year long feature on her blog titled "What I wish I knew Before my ________ was Diagnosed with Cancer."  I was thankful for the opportunity to share what I wish I knew before Matthew was diagnosed.

 

My only son Matthew was diagnosed on September 7, 2012 with DIPG, an incurable, inoperable form of brain cancer.  He was 10 days shy of turning 10 when he was diagnosed.  He battled bravely for 14 months and passed away in my arms on November 5, 2013. 

Although there is nothing I can do to change the events that have taken place, there are several things I wish I knew before Matthew was diagnosed. 

I wish I knew how much our family was loved:  Before Matthew’s diagnosis, I knew that my family was liked.  We have a wonderful circle of friends and we live in a great community.  However, I could not comprehend how much we are LOVED until Matthew was diagnosed.  The generosity that we have received is beyond anything that I ever could have imagined.  It’s overwhelming, incomprehensible, humbling, and quite simply amazing.  Two months after his death, we are still reminded daily how much we are truly loved. 

I wish I knew what this diagnosis would do to my relationships:  In my naïve mind, I thought something as major as your child being diagnosed with terminal cancer would somehow create a clean slate with the relationships in my life.  Previous issues would be erased and everything would start over fresh.  Everyone would realize as much as I had what really matters in life.  I was sadly naïve in this area.  Some relationships have been made stronger than ever.  My husband and I are closer than I ever thought we could be.  My friends and close family members have rallied around me and supported me in ways that I never even realized I needed.  They were my strength for 14 months and continue to be.  I’ve also learned that if the death of my son isn’t reason enough for some people to forgive, forget and move on, then I don’t know that is.  This journey has told me everything I need to know about the relationships I have with the people in my life.

I wish I knew not to take simple moments of life with my children for granted:  Of course I’ve loved my children since the day they were born.  But like any mother, I got frustrated, yelled when I shouldn’t have, probably said “no” more than I needed to and took for granted the time we had together.  Hearing the words “no cure, maybe a year if we’re lucky….” immediately changed that.  There is nothing like knowing your son is living on borrowed time to make you cherish every single moment together.  Someone once said “it’s like living life in High Definition.”  Every sunny day is more beautiful, every laugh is more musical, and every achievement is more remarkable.  I savored every breath he took, every word he spoke, every squeeze of his hand in mine as we’d walk, his smell, his voice, his everything.  It’s sad that it took an experience like this to make me realize how to cherish the everyday little moments I have with my children, but I’m grateful that I’ve at least learned to live in HD. 

I wish I knew that karma is as make believe as unicorns:  I’ve had a good life.  Yes, I’ve had challenges, but I believe that these experiences have made me stronger and made me who I am.  I assumed that because we are good people who live a good life that the universe, God, Buddha, whoever, will take care of us.  I was wrong.  Bad things do indeed happen to really good people.  The theory of Karma- if one sows goodness, one will reap goodness- was blown apart the day Matthew was diagnosed.  What could my 9 year old son have done to deserve a cancer diagnosis?  What could we, his parents have done that was so awful to deserve this?  Is this a lesson?  Is God trying to teach us something?  These are answers I don’t have and don’t know that I ever will.  But I do know that the unthinkable CAN happen to us.  But the idea that karma is somehow at work- I’ll never believe that theory again.   

Each Journey is Unique:  The day that Matthew was diagnosed, a neurosurgeon at Seattle Children’s told us “It’s important to remember that Matthew’s tumor is unique.  No one knows how it will behave, so don’t think that the statistics will dictate his journey.”  I wish I had known that just as Matthew’s journey was unique; my grief journey will be unique as well.  It’s a wonderful thing to be connected with amazing moms who have lost a child as well, but when you start comparing your journey to others, that can be harmful.  There have been times that I’ve felt that I’m not “sad enough” if I have a good day.  Deep down, I know that I love my son more than life itself and the amount of tears that I cry are not a measure of that love.  I’ve had to learn that I will grieve however I need to grieve and it will happen when I need it to happen.  Comparing myself to others only serves to make me feel that I’m not “doing it right.”   Had I known this early on, I think I would have saved myself a decent amount of guilt.

I wish I knew how strong I really am:  There have been too many moments to count that I’ve cried “I can’t do this….I don’t know how I’ll survive.”  Guess what, I’m doing it.  I’m surviving.  I took care of our son for 14 months better than any other person could have.  I comforted him when he was sick, scared, and in pain.  I kissed him goodbye every day for 6 weeks as he went into his radiation treatments and told him how brave he was.  I watched as poison dripped into his veins and told him how proud we were of him.  I told him about Heaven and Jesus and eternal life and eased his fears about death and leaving his mommy, daddy and sister behind.  And I held him in my arms and comforted him as he took his last breaths while telling him that it was ok, it was time for him to go.  So yes, I am strong.  I am so much stronger than I ever even imagined.  Fear will never hold me back.  If I am strong enough to live through these past 16 months, I am strong enough for anything.

As I read through this, I’m left wondering “What if I knew all these things before Matthew was diagnosed with cancer?  What would I have learned?”   I guess this is how it was meant to be.  Although it would have been helpful to know these things 16 months ago, these were the lessons I was meant to learn.

With Matthew in my Heart, Nikki

2 Months/8 Weeks/61 Days

2 Months.  8 weeks.  61 days. 

Each of those measurements of time are how long Matthew's been gone.

So, what does 2 months feel like?  This morning if felt oddly numb.  Surreal almost.  By 11 AM it felt like sobbing in a grocery store parking lot.  By Noon it felt like a throbbing headache.  And now, at 3 pm, it's isolating.   

I've never been impressed with anniversaries.  Honestly, I don't love Steve any more the day before our anniversary than I do on our wedding anniversary.  To me, the other 364 days in the year are more important than that one day.  It's not like you can pay zero attention to your marriage all year long and then make a big deal of your anniversary and expect to have a successful marriage.  Our anniversaries are like any other day.  Since Matthew started playing baseball at the age of 4, our anniversary has usually been spent at the ball park and honestly, I can't think of any better way to spend it.  Last year, Steve bought me a hot dog on our wedding anniversary.  Perfection. 

I haven't decided how I feel about these death anniversary dates.  Part of me hates them, because it's quantifying the fact that the last time we saw Matthew is getting farther and farther away.  I think that is the worst part for me.  I don't feel like I miss him any more today than I did yesterday, or last week.  The pain is mostly the same every day.  Sure, there are the fluke days that are really hard and there are days that are easier, but I don't feel like the 5th of each month hurts any worse than the 15th, or the 28th.  It's not as if I need a reminder that Matthew died.  In a way, these death anniversaries are much like wedding anniversaries...unimpressive to me.  Maybe there will be a 5th of the month that I won't think "today is x months since Matthew died."  Maybe.  I don't know. 

These two months have been interesting, to say the least.  Dr. Mood warned us many times about "the people in the periphery."  She worried about them and how we would handle those interactions.  I wish I could tell you that she was wrong to worry...but I've learned she seldom is. 

I wish that I could say that relationships have remained the same as they were in the care giving period, but they haven't.  People have said the wrong things.  They have said nothing.  Some people have disappeared.  Fellow cancer friends told me  "you'll be amazed that the people who you thought would be there for you aren't and the people you least expect to be there will step up like you won't believe."  For the most part, that's really true.  Hard to believe, but true. 

These two months have been filled with lots of tears and lots of smiles and laughs too.  We talk about Matthew daily.  He's a part of practically every conversation we have.  These two months have also been filled with some wonderful signs from Matthew and some reassuring and comforting words from my first ever visit with a medium. 

So tonight, as we know that our sweet boys spirit is with us always, we will honor him by eating salmon.  Not just ANY salmon, but the salmon that he and Steve caught in early October. 

I love you all the way to the moon and back my sweet boy....
 

The Kvetching Circle

I remember hearing about the "kvetching circle" when Matthew was diagnosed and really appreciated the theory behind it.  I'm sharing it again today for those who never got to read it.

How not to say the wrong thing

It works in all kinds of crises -- medical, legal, even existential. It's the 'Ring Theory' of kvetching. The first rule is comfort in, dump out.

 

April 07, 2013|By Susan Silk and Barry Goldman

 

When Susan had breast cancer, we heard a lot of lame remarks, but our favorite came from one of Susan's colleagues. She wanted, she needed, to visit Susan after the surgery, but Susan didn't feel like having visitors, and she said so. Her colleague's response? "This isn't just about you."
 
"It's not?" Susan wondered. "My breast cancer is not about me? It's about you?"
 
The same theme came up again when our friend Katie had a brain aneurysm. She was in intensive care for a long time and finally got out and into a step-down unit. She was no longer covered with tubes and lines and monitors, but she was still in rough shape. A friend came and saw her and then stepped into the hall with Katie's husband, Pat. "I wasn't prepared for this," she told him. "I don't know if I can handle it."
 
This woman loves Katie, and she said what she did because the sight of Katie in this condition moved her so deeply. But it was the wrong thing to say. And it was wrong in the same way Susan's colleague's remark was wrong.
 
Susan has since developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory.

Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie's aneurysm, that's Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie's aneurysm, that was Katie's husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan's patients found it useful to tape it to her refrigerator.
 
Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring.
 
Everyone else can say those things too, but only to people in larger rings.
When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn't, don't say it. Don't, for example, give advice. People who are suffering from trauma don't need advice. They need comfort and support. So say, "I'm sorry" or "This must really be hard for you" or "Can I bring you a pot roast?" Don't say, "You should hear what happened to me" or "Here's what I would do if I were you." And don't say, "This is really bringing me down."
 
If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that's fine. It's a perfectly normal response. Just do it to someone in a bigger ring.

Comfort IN, dump OUT.
 
There was nothing wrong with Katie's friend saying she was not prepared for how horrible Katie looked, or even that she didn't think she could handle it. The mistake was that she said those things to Pat. She dumped IN.
 
Complaining to someone in a smaller ring than yours doesn't do either of you any good. On the other hand, being supportive to her principal caregiver may be the best thing you can do for the patient.

Most of us know this. Almost nobody would complain to the patient about how rotten she looks. Almost no one would say that looking at her makes them think of the fragility of life and their own closeness to death. In other words, we know enough not to dump into the center ring. Ring Theory merely expands that intuition and makes it more concrete: Don't just avoid dumping into the center ring, avoid dumping into any ring smaller than your own.
 
Remember, you can say whatever you want if you just wait until you're talking to someone in a larger ring than yours.
 
And don't worry. You'll get your turn in the center ring. You can count on that.
 

Resolutions

I recently read this in a grief packet sent by Seattle Children's....

I resolve...

That I will grieve as much, and for as long, as I feel like grieving, and that I will not let others put a time table on my grief.

That I will grieve in whatever way I feel like grieving, and I will ignore those who try to tell me what I should or should not be feeling and how I should or should not be behaving.

That I will cry whenever and wherever I feel like crying, and that I will not hold back my tears just because someone else feels I should be "brave" or "getting better" or "healing by now."

That I will talk about my child as often as I want to, and that I will not let others turn me off just because they can't deal with their own feelings.

That I will not expect family and friends to know how I feel, understanding that one who has not lost a child cannot possibly know how it feels.

That I will not blame myself for my child's death, and that I will constantly remind myself that I did the best job of parenting I could have possibly done.  But when feelings of guilt are overwhelming, I will remind myself that this is a normal part f the grief process and it, too, will pass.

That I will not be afraid or ashamed to seek professional help if I feel it is necessary.

That I will commune with my child at least once a day in whatever way feels comfortable and natural to me, and that I won't feel compelled to explain this communion to others or to justify or even discuss it with them.

That I will try to eat, sleep, and exercise every day in order to give my body the strength it will need to help me cope with my grief.

To know that I am not losing my mind, and I will remind myself that loss of memory, feelings of disorientation, lack of energy, and a sense of vulnerability are all normal parts of the grief process.

To know that I will heal, even though it may take a long time.

To let myself heal and not feel guilty about feeling better.

To remind myself that the grief process is circuitous- that is, I will not make steady upward progress.  And when I find myself slipping back into the old moods of despair and depression, I will tell myself that "slipping backward" is also a normal part of the grief process and these moods, too, will pass.

To try to be happy about something for part of every day, knowing that at first, I may have to force myself to think cheerful thoughts, so eventually they may become a habit.

That I will reach out at times, and try to help someone else, knowing that helping others will help me to get over my depression.

That even though my child is dead, I will opt for life, knowing that is what my child would want me to do.

Nancy Mower, Honolulu, HI