Christmas 2013- Lessons Learned

With hours left of Christmas 2013, I'm left reflecting on the past 48 hours and the lessons learned.

*  Trust your gut.  This is one I already know and usually abide by religiously.  The 14 month journey of caring for Matthew has taught me that my gut is always right.  I have amazing intuition that has guided me (along with God) through the worst time of my life, through decisions and discussions I never believed I would have to experience.  Our collective gut told us that we were biting off more than we could chew this year and we were right.  It was too much to expect for us to be "normal" this year.  In the future, we will honor our instincts and only do what we know to be right for us.

*  There are some things that just can't be fixed.  I think that when you experience a loss this huge, it puts your life into perspective in a lot of ways.  I know what's important to me.  I know that I have limited "shelf space" and I have to decide who and what to put on my shelf.  Defending myself against something that I'm not takes a lot of energy and I don't have the space on my shelf for that.  

*  Sometimes less is more.  Today was a perfectly simple day with Steve and Megan.  We watched movies, talked about Matthew and took a walk to Starbucks- on the way seeing beautiful Heaven clouds.  Our best friends came over and we laughed and laughed and laughed.  The kids all played with Matthew's Nerf guns and a full on Nerf assault ensued.  My heart was happier than it's been in days.

*  We can do this.  Yes, it's ugly and messy and we have no idea what we're doing....but we're doing it.  We're making our way on this journey after the journey.  With my husband and my daughter by my side and my son in my heart and watching over us from Heaven, we can do this.

Merry Christmas to all of our Friends and Family....

With Matthew in my Heart, Nikki

What Remains

6 weeks.  His room doesn't smell like him any more. 

 

Every night I go in and turn off his lamp and tell him good night.   

No other room in the house smells like HIS room.  But I can't smell it any more.  I feel close to him there....in the room with HIS things. 

 

 The things that HE loved.  The things that HE touched over and over again.

 

 The clothes that HE wore....that touched HIS skin.

6 weeks later....this is what we're left with.  Sure we have our memories.  But this is what we have left of HIM.  The physical connection of things- material, tangible, touchable things.

 

At six weeks, I still haven't removed the last traces of Matthew.  These are things that we don't NEED to keep any more...but yet I can't remove them.

 

 

I don't think we'll ever change the chalk board....the largest message was from when he was diagnosed.

 

 

 Yep, in our master bathroom....he slept in our bed the last weeks of his life.

His back pack remains where it's been since he put it there on the last day he attended school.  His homework folder is still inside.

 

 

And then there are new things that I've added.  This beautiful frame that my oldest and dearest friend made us and surprised us with after Matthew died.

 

What remains is clearly not enough.  Not enough to ease the pain.  Not enough to bring him back.  It's just not enough.  Nothing will ever be enough.

 

 

Dear Matthew

Dear Matthew,

I got the idea today to write you a letter.  I'm sure you know that I talk to you all of the time, all day long, but I thought I would try a letter and see how that feels.

First of all, how is Heaven?  Is it everything we talked about?  How is Jacob?  Who all have you met there?  I wish you could tell me ALL about it. 

It's been a long month without you here.  The house is really quiet without you.  I miss having a little boy here.  I miss SpongeBob and Regular Show....I thought I'd never say that.  Polly is doing ok.  She really missed you the first few days after you were gone, but she's doing ok now.  Megan is doing ok as well.  She misses you a lot buddy.  She's very lonely without you here.  You are her best friend, you know that, right?  We talk about you all of the time.  Sometimes we remember something funny and other times we just wonder what you'd think about something.  I can tell you that we are keeping our promises. 

Daddy and I are missing you a lot.  This has been much harder than I ever imagined it could be.  I know you worried about how we'd do after you died....and I wish I could say we're doing ok.  It brings me peace and comfort when I think of the happy times we had together as a family, so that's what I try to focus on.  We're doing some very special things in your memory this Christmas and it makes me feel very good to know that we'll be doing good for others in your name. 

We went and picked out a Christmas tree Thursday after school.  It was freezing cold and your sister had an attitude issue, so we pretty much grabbed the first one we saw.  Having a live tree really is a pain in the butt.  There are needles everywhere and you have to water it!  I already spilled water on the carpet and it's only been up one day!  AND, it has spiders!!  We might have to go back to a fake tree next year.  I told Daddy he couldn't put the ugly colored lights on the tree this year- I remember how ugly you and I  thought they were last year.  The clear lights look much better this year.  I've loved looking at all of your ornaments that you've made over the years.  They are all on the front of the tree where we can see them.  We got you a few new ornaments this year too...I hope you like them.

Today is Megan's birthday party with her friends.  Peyton and Wesley are going to sleep over tonight.  I secretly wish you were here so you could torment them like a good big brother would.  I can just imagine you'd be shooting them with a nerf gun, eavesdropping on their conversation, maybe even farting on them and running off.  It won't be the same without you here.

I told Daddy the other day that I thought our next dog should be a basset hound named Charlie.  He didn't seem thrilled with the idea, but I'll keep working on him. 

I think that's about it for now.  I love you to the moon and back =)

All my Love, Mommy

 

 

 

Megan wanted to make sure these two were together...

One Month

One month ago today, I held Matthew in my arms and watched as he took is last breaths here on Earth.  I can still see his face, hear the breathing and feel his hair as I stroked his head.  I can remember as he took is final breaths telling him "it's ok...fly free buddy...it's time for you to go now.  We will be ok."  I can't tell you how many times I told him that we'd be ok during those last days.  Not because I believed it, but because I knew he needed to think we'd be ok once he was gone.

Here we are.  Twenty-eight days later.  I feel like things are getting harder as time goes on.  The fog is lifting and the pain is more evident.  This pain is unlike anything I've ever experienced.  It's a physical hurt that's so primal it cuts straight to your core.  It is with me all of the time, every single day.  Sometimes it's just a slight current and sometimes (like today) it's a tsunami.  I miss Matthew more than I thought possible.  I knew this would be hard, but on days like today, it's just unimaginable and unbearable. 

I've struggled this past week with the details surrounding Matthew's last month.  When he had his MRI on September 30th, all we knew is that his tumor had grown.  There was also an additional area of concern in his left frontal lobe that we talked about, but didn't discuss too much.  Every other visit, I would read his MRI report immediately, but that visit they didn't offer us the report, and I didn't ask for it.  This week, I asked Cory to email me the report.  Let me just say, I'm SO glad I didn't read it in September.  Nothing good would have come from it.  The area of concern in his left frontal lobe had been present in July as well and had grown at the September MRI.  We will never know exactly what it was, but it was likely another area of DIPG.  DIPG generally doesn't spread, but glioma cells can and do travel occasionally and it is more than likely what happened with Matthew.  The original tumor had also grown upward into his cerebellum, midbrain, corticospinal tracts, thalamus and hippocampus.  Like I said, I'm so glad I didn't read that in September. 

My obsession with the details of his last month also relate to his actual death and what caused him to die.  Let me explain.  I know brain cancer caused him to die, but I want to know the actual physiologic events that caused his death.  I know in my heart that we did everything possible to keep him comfortable and that he was not in pain when he died.  I also know that the decisions we made regarding his care were made with love and only his best interests in mind.  I know we did everything "right" and so my need to know the details isn't because I think we could have changed anything- I know we couldn't.  But as his mother, I simply have to know.

Today, Guru Cory and I had a good long chat about death by brain cancer.  Having lost someone close to her to cancer, she completely sympathized with my "need to know" issues and explained that she's felt that way too.  We talked about Matthew's last 24 hours and she explained several different possibilities regarding what was physically happening with him during that time.  The bottom line is, we'll never know.  Even if he was in the hospital when he died and was being closely monitored, we still may not have had a definitive answer.  So, here I am, one month later- knowing no more than I did one month ago.  I am completely confident that we made all the right choices...yet will never have the answers that I desperately want.

Tonight the tears have faded and the tsunami receded for now.  In the words of a very wise mother who lost her daughter this year "wish it were different, but it just hurts, and we cry, and we find some way to accept it, then it comes back and we do it again."

With Matthew in my Heart, Nikki

  One of the sweetest things I've ever seen.  One of Matthew's best friends visiting during his last week.  He held his hand quietly for quite some time.  Matthew was lucky to have friends like Brayden.

A Half Gallon of Milk

Matthew was our milk drinker.  Megan will drink it, but Matthew LOVED milk.  He would choose it above soda if given the choice and his love of milk increased as he got sicker.  He drank a lot of milk until he could no longer drink (yep- that happens with DIPG). 

The other day Steve noticed that the gallon of milk in the fridge was past it's expiration date and it was still half full.  It hit me that we don't need to buy a gallon of milk any more.  For some reason, that little realization has really bothered me.  I don't want to buy the half gallon of milk.  I want a full gallon.  The full gallon means you have larger family.  The half gallon means that you have one living child....not two.  The half gallon of milk sucks.

Maybe it's just the change that I don't like.  We haven't changed a single thing since Matthew died.  His toothbrushes are in the same places as the day he died.  His clothes are washed and put away and his glasses are on his nightstand....as if they are just waiting to be worn.  His medication reconciliation form is still taped to the kitchen cabinet.  The only thing I've thrown away is his DNR/POLST form.  I hated that form.  I cried when I signed it and was happy to throw it away the day after he died. 

We survived the first Thanksgiving without Matthew.  Instead of Thanksgiving, Steve said "Happy Thursday" and it stuck for the day.  We went to the Turkey Trot, just like we did last year and instead of holding Matthew's hand as we walked, I wrote his name on my bib.  We visited a friends house afterwards for mimosas and bloody marys and had a lot of fun with them. We ended the day with dinner at Steve's parents house.  As we were laying in bed that night, I looked at the picture from the Turkey Trot.  It just looks so odd with only the three of us.  Steve didn't even want to look at it. 

It's odd- I can have happy moments.  I can laugh at funny things and have those moments where I'm ok.  But something is missing.  Matthew is missing.  There is a huge hole in my heart and life and even though I can have those happy moments, I feel like the happiness in my life is gone for now.  It's as if I'm going through the motions waiting for something....like I'm buying time almost.  But I don't know what I'm waiting for.

 Turkey Trot 2012.....

Three Weeks of Firsts

When you have  a new child, you look forward to all of the "firsts."  Each new milestone is a reason for celebration as you watch your baby grow.

There are a lot of "firsts" after a child dies too.  Fortunately and unfortunately, life goes on.  Much of the past 3 weeks since Matthew died have been spent navigating the "firsts."  First time going to his school after he died.  First time going to our friends house without him.  Megan's first birthday without him here.  Going back to church for the first time after his service.  In a way, it's almost like ripping the Band-Aid off a wound quickly.  These things are uncomfortable- even painful, but we have to do them.    We can't leave the Band-Aid on forever.

This week we'll face our first Thanksgiving without Matthew.  In church on Sunday, Pastor Jerry preached about thanking God above all else, regardless of what is happening in your life.  So as we face this first Thanksgiving without our son here, I am thankful he is no longer suffering.  For as much as I would do anything to have him back here, it would never be at the expense of him suffering again.  More than ever I'm also thankful for Steve and Wiggy.  We are in this together, the three of us.  They are my link to Matthew.  The three of us are connected by our biology, our genetics and our memories of our son and brother.

Stacey asked me the other day what our plan was for Thanksgiving.  My reply was "pills and booze."  You have to admit, it's NOT a bad plan!  Steve and I had discussed whether we wanted to stick with tradition this year, or do something totally different.  I wondered if sticking with tradition will make Matthew's absence MORE evident compared to doing something completely different.  With his death being so recent, neither of us had a strong feeling either way about what we wanted to do.  We just knew that it didn't feel right going out of town.  So we're doing some of the traditional and then going to a movie, something we've never done on Thanksgiving.  Who knows, me might revert to the pills and booze plan.

I have a craft that Matthew made in preschool for Thanksgiving.  He must have been 4 and he said he was thankful for: candy, horses, Wiggy and chickens.  That is what I'm choosing to remember this Thanksgiving-all of the good memories of Thanksgivings past. 

I hope all of you have a great Thanksgiving too....Nik

Why A Blog?

Over the past 14 months, from the time of Matthew's diagnosis until his death earlier this month, I was told multiple times that I should consider writing more of our journey, either in a blog or book format.  Now that Matthew is gone, it doesn't seem "right" to share on caring bridge, so I've decided to start this blog to share this next part of our journey.  Like my therapist "Dr. Mood" said, "the story isn't over."  And so here it is, the journey after the journey.....