Here we are. One year later. I'm sitting in the same spot I was a year ago tonight. The kitchen table is filled with flowers. Beautiful flowers that are a physical reminder that Matthew was loved. Is loved. A reminder that he made such a difference in this world. A reminder that we are loved.
What does one year feel like? I can only say that it feels different than it did a year ago. Every month has brought a new feeling, every week for that matter. Today has been ok. I think the weeks leading up to today were much harder than today itself.
I was quiet today, my thoughts and I kept to ourselves mostly. I did find myself really thinking about how much of a difference Matthew made in this world. He touched so many lives. I really thought a lot about that today.
One year feels like forever and yesterday all at once. When I think about "one year" it seems like such a long time. But it feels like Matthew hasn't been gone that long. It's still too painful to really think about the future and what that looks like.
So I guess one year just feels different.
One thing that feels the same is the love of our friends and family...they have been amazing. They continue to love us and support us and wrap their arms around us when we need it most....
Tonight we went to Matthew's favorite Mexican restaurant and toasted him...he would approve....
With Matthew in my Heart, Nikki
Wednesday, November 5, 2014
Wednesday, June 4, 2014
A Picture is Worth A Thousand Words
First Day of School- September 2013
Last Day of School- June 2014
Tuesday, May 6, 2014
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
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
Monday, May 5, 2014
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
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
Monday, April 14, 2014
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.
With Matthew in my Heart, Nikki
Wednesday, March 5, 2014
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.
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
Thursday, January 23, 2014
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.
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
Sunday, January 12, 2014
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
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.
Thursday, January 9, 2014
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
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
Sunday, January 5, 2014
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.
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.
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
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....
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.
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.
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.
"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.
Wednesday, January 1, 2014
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
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
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