Bad can be the new good

I have been thinking about bad things that happen. It’s inescapable really and bad demands a great deal of our attention. I was on social media and was reading posts, passing the time. There was one about the trees being cut down at our local elementary school, worse some how because it happened on Earth Day. The poor kids were so upset. Which of course meant upset kids going home and sharing their bad, that they saw that day. The trees were important to them. That set off their parents, totally understandable.

The post was about how could the school do that? The trees were treasured. There were rational points being made about needing to cut them down for construction purposes and that new trees, twice as many trees, would be planted. But trees take years to go. And the kids were upset, so naturally parents were upset too.

We have to remember that without those kind of things happening, without bad making an impact, leaving a mark, sometimes change won’t occur. It is amazing, when despite the bad, the bad turns into good. It may not be immediate, it could take decades. Like, maybe one of those children was so bothered by that bad event, it impacts them and they become a crusader for environmental change and invents something that helps solve the crisis we face now as a planet. Think how many researchers are tying to solve illnesses that have personally caused them bad. So many. And how much money is raised to solve problems, help others all because of bad.

Bad, so bad losing Colin. But without that bad, The MIP Foundation would never have born- it just would not have. And Maggie, the 15 year old young lady that got her MIP Kit would not have gotten a MIP kit last week. And she would not have been reminded that she is so much more than her cancer diagnosis. And who knows, Maggie also likes gardening. And maybe Maggie will remember our MIP Kit and how it touched her heart and maybe some day she will channel that into her gardening and design an amazing roof top garden for children battling cancer and stuck in a hospital. Just like she is. Who knows. But, it would have all been born from her bad, and right now she has some of the worst she can experience, happening to her right now.

Bad CAN be the new good. It’s all one big possibility. Bad creates strong and powerful emotions. There is a multitude of examples of the bad being the new good. And none of them may have happened if the bad didn’t happen first. There is a pattern to life, there really is.

Tomorrow will be one year that we held Colin’s Celebration of Life. Wow, one whole year, how did it come to this? I have so many voids left empty by losing Colin. They won’t ever be filled. I don’t try. But what I do try to do is look for where good is being born from the bad.

I literally ask myself every day, so many times, how did it come to this? But I still believe that bad IS the new good. I may have one ear always tilted to the side, listening… always listening to hear Colin saying, mom, where are you. I desperately listen. But I suppose the other ear is listening to, hearing everything else. And it is a lot of good. They go together.

Woven

It is not possible to know how intricately woven the fabric of your life is until you have run out of one of the threads you use every day. You are not done needing that thread but then all of a sudden, without any warning, you run out. Colin was such a vibrant thread in our family.

It is a lot of work to keep weaving without his thread. And it is all encompassing, in many ways that would not have crossed my mind, areas I didn’t even know existed! Areas that it never occurred to me that his thread would be so glaringly missed. Simple, silly things like going to see Avengers End Game without him. He was such a huge fan and it hurts my heart that he misses the last movie and hasn’t been a part of the conversations leading up to it. That is won’t be sitting there with us as he should be.

Then it can be serious, like having to gather information and make plans how to close his college savings accounts. I made that phone call yesterday and the raw pain of knowing he never needed all that penny pinched savings for college… well it hurts. The poor man that got my call; he was so very kind to me.

Colin’s friends come home from college soon. My mind has often said, for example when we went to Willamsburg for spring break, “Colin wouldn’t be here anyway because he would have been at school.” Maybe an irrational way of rationalizing his absence but sometimes, I just have to give my heart and mind a break. Soon I won’t be able to use that excuse anymore and his thread will be so glaringly absent for the summer months.

It’s terrible when he gets a piece of mail but that is happening less and less, so it is becoming more terrible that he isn’t getting mail, as life weaves its own pattern without his tread, moves on. Each person’s thread is such a treasure in it’s own uniqueness. I do appreciate that I have a different perspective and can more clearly see all of life’s threads, everywhere coming together and changing, merging, parting and ever shifting. But boy, there isn’t anything I wouldn’t give to have Colin’s thread back in our pattern.

Mind vs. Body

Your mind can have one reaction towards grief and your body a completely different reaction. And if your mind says it is ok, no big deal, inversely, your body can say, nope this is a huge fu@king deal. All day long I have been going back and forth between the two, like a ping pong ball and it is getting pretty exhausting.

Yes, mentally I know today is when Colin was officially diagnosed with cancer 5 years ago. Mentally, I also know it is just a day on a calendar and not a big deal. I don’t feel bothered by today in my mind, it is more like a casual observation.

My body however, well the body knows things and feels things all on its own. It is a weird thing. An outpouring of grief your mind perhaps won’t express? So far, I have peeled my finger while peeling cucumbers. Cut said tip of finger (badly) when slicing said cucumbers. Totally forgotten where my phone is. And my purse. And my keys (thank God for Tile). In my car, backed up and hit a curb. Also driven over a curb. Only fed one dog, the other one was like WTH?? Can’t focus at all (lord help me when I play bingo tonight) and struggle to finish a thought. And that is what I have noticed, what am I doing that I am not noticing, I wonder?

Back when Colin was first diagnosed, I remember going to Giant. And wandering though the grocery store totally forgetting what I was there for. So I threw a few random things in the cart. Paid but left my purse and walked away. Thank you to the person that noticed. Got to my car but didn’t put the groceries in the car because I had put the cart in the collect the cart area and literally was pulling away when a person flagged me down. I remember it so clearly because I felt totally fine!! But my body was saying on a much deeper level, not today sugar puff.

I find on days when your body is voicing its own opinions, you better listen. Too often the mind tries to take control, to push through, like a ranting toddler wanting its own way. But I am telling you, the body knows. It knows today is the day our life shifted and stopped being our life. It knows that this was the day that started the beginning of the end. It knows it yearns for our life before cancer. It knows the Colin is gone.

It knows there was a clear before. And a clear after. And I really don’t like the after.

Love.

People tell me there is no greater love than that of a mother's towards her child. It was and will forever remain, the hardest thing I ever had to do, support Colin's decision to die. Only love made that possible. My heart hurts so much, not buying him a heart shaped box with reese's peanut butter cups in it.

Because he had the vent in, he couldn't talk the last week. None of us could have conversations, hear what he thought, what he wanted. Was he ok with his decision? And the crazy thing is, even our very last conversation, I wasn't asking him anything. I was just telling him he is loved and that it was ok for him to go, that he doesn't need to suffer anymore. It was reassuring him that we would all be fine. It was just love. Pure love.

Before Colin got cancer, boy could Dave and I have the stupidest fights. I mean stupid. Who did more around the house. Or who was more tired. Why did I have to do bath night again. And the trap of, well if you truly loved me you would know blah blah blah. How embarrassing.

We still argue, but not nearly as much. And 90% of the times we do, it is born from the sadness and exhaustion of missing Colin. The arguments don't last long. It is just a waste of our time. I don't want to hurt Dave. We both already hurt too much. There is the choice to look towards the argument which when, even being right feels wrong. Or to look towards the choice of filling in the arguments, the exhaustion, the stress of life... to instead fill those cracks with love.

Colin's first Valentine's Day my dad looked every where for a Valentine's outfit for Colin and not finding anything for a boy, he finally settled on some heart stretchy pants that looked boyish enough, well I suppose if you squinted. But I realize now, that was an outward expression of how much he loved Colin. He literally wanted to dress him in his love, physically and emotionally. I get that now, I didn't then. Then, I just thought he was being crazy. Crazy maybe, but crazy in love.

I still stand by what I have said before, that the hustle and bustle of life is too much. It can drown out love. Today, remember to let it be the louder part of your day. I know for a fact on the day, one of your loved ones dies, you won't be thinking at all about the laundry not being done, or the kids missing a bath. You will have wanted more time. You will think about how you wished you had more moments to let love bubble up between the cracks that run though our lives. Care less about the stuff and more about the love. It's some of the best advice I can pass along.

Pray is a verb.

I don’t know if I can do it.  I mean, how can we be barreling down on the one-year anniversary of losing Colin, of him dying. 

I can’t believe it was one year today we were getting on an airplane and jetting off to the Super Bowl.  It was in January last year that Colin started turning, his path wasn’t forward anymore.  In fact, it was taking a wild detour and it was heading down an awful, scary, bad, painful path.  Then this bright moment happened and off we went.  We just stopped and went. One night in the hotel in Minneapolis, Colin lost it.  He was exhausted, he was pulling on reserves he didn’t know he even had for years and I was truly beginning to see, to understand he didn’t have it in him anymore. He was upset and admitting how exhausted he was, how tired and didn’t want to be like this anymore.  He couldn’t keep doing it. He was done with it all.

That trip was the last time we had as a regular family.  And by regular, I mean, for 4 hours at the Super Bowl, we left cancer behind.  And I am so incredibly blessed that Colin got to have that experience.  Not the one of being at the Super Bowl.  That was great, I won’t deny it. What I mean is, the experience where he was a regular guy, in a mob of people, anonymous to the fact that he was incredibly sick.  He had so much joy, so much happiness that night. For me, it was a gift to see him be just himself, not a sick and dying Colin.  The Eagles winning was just the cherry on top. We went to that Super Bowl knowing and fully accepting that we were risking his life in doing so.  And it was worth every single second to give him that moment in time.

I was driving home today and kept looking up at the sun, knowing it was behind the clouds.  And I realized that the sun was shining regardless of what was gong on down here, the snow and the cold and the yucky gray.  I couldn’t see the piercing blue sky, the sun…. All the beauty that we see more clearly on a blue skied day. Just because I could not see it today, didn’t mean it wasn’t there. It is. Which seems kind of obvious. Every day that sun is bright and shining even if we can’t see it that way. Just like in the picture I took.

It occurred to me life is the same.  I am living in a very gray, very dark cold world right now.  But that doesn’t mean that sun isn’t there shining, I just can’t see it right now.  Moving forward in faith that the better days are still there, somewhere.  And I will see those kinds of days again even if I can’t see them now.   That beauty I am not seeing so clearly right now, it is still there!

I am in a fog a lot lately.  My mind is just spinning and spinning. February 1, 2014 was the beginning of the end for us. Feb 8th it will be 5 years that Colin went snowboarding a regular kid…. February 10th he first seemed to not feel well…. February 17th we went to see a nurse, February 20th he demanded a CT scan, February 21st he tried to do go to school but was sent home sick and we went back to the doctor... February 22nd, we left for Chop and the people we were on February 21st ceased to exist.  Will mentioned yesterday, “mom it will be here soon.”  I knew exactly what he meant; the 5-year anniversary of Colin being diagnosed with cancer.

I am just going to try and do the best I can these next few months and quell the panic that is in me just about constantly.  Forgive me, forgive anyone that you know that is dealing with this, with something, anything like this.  If they forget something, or don’t do something they mean to. Or temporarily get lost. Forget to email or text back. Be gentle, be kind, be compassionate.  This “it”, it means facing everything again and it is searing. February last year, he was admitted, and we started to meet with doctors and learn his lungs were starting to fail. And he was being told he needed to start doing the things he wanted to without worry for his health.  In other words, get it in now while you can.  I remember him laying on the hospital bed crying, that he just wanted to go on a family cruise one more time before he died.  My God, but I regret not booking that vacation for him the next day and just dropping everything and going. Just because some one tells you your child may die, you don’t believe it.  Why would you?  We always, each and every single one of us, will always think we have more time to do the things we want.  It is common curse and we all have it.

I moved over to writing on a blog space because writing for me is a selfish act, it exorcises thoughts out of my head for a bit.  And I was getting upset by everyone saying they pray for us.  Don’t pray for me, instead be kind to others.  Praying seems like the easy way out. There is no work in that. And what this is like, what this feels like, well it feels unfair to take the easy way out. I am not saying praying isn’t a good thing or helpful. Or you shouldn’t do it. Nor am I discounting the power of prayer, because I do believe in it.

But for a person… any person that experiences a severe loss, I can almost guarantee you that your praying isn’t making this more manageable.  Please don’t confuse me for being insensitive.  But think on it, would you feel better if your child died and someone said, I pray for you?  

If it was only that easy. Instead, tell me about how you paid it forward in kindness for another, in honor of Colin.  Or that you slowed down and spent time together.  Or that you did something for yourself that you have been putting off.  Yes, praying just seems like the easy way out. Think, how do you want to act on your prayers?  Pray, it is a verb after all.

Buying Pretzels. And apples.

I really miss buying pretzels. I really do. And apples. I miss buying apples. Every week I walk by those sections in the grocery store so filled with longing and sadness and I think, I really miss buying those things. They were two of Colin’s favorites. Dave and Will are not big fans of pretzels and I don’t have the heart to buy them just for me. There is just so much to miss, so much that is lost when your child dies. Everyone has the fancy term for it called “Secondary Losses” but I just call it, I miss buying pretzels. Secondary losses are so much more than just losing people. It is more than that.

I miss Colin’s friends and seeing them and how much they grow and learn and laugh and care for him. I miss having a 19 year old and seeing what his life brings his way. I miss friends I had that no longer can relate to me and are gone. I miss Colin’s best friend that was like a second son to me, but is gone too. I imagine it is hard for him to be in our house with Colin gone. Because it is hard, really hard. I miss friends I made at Chop that I can’t see any more. I miss the lady at the Einstein bagel place at Chop that we knew since week one, when she was the one that delivered Colin’s food from the cafeteria and then she moved to the new building and would make his drinks and bagels before clinic. I miss the ladies at the check in desk that every week I laughed with, that always said hello and had my tag ready for me before I asked for it. They always said hi to Colin and talked with him too. I hope they think he is just better and no longer needs Chop, not that he died- that would make them so sad.

I miss the higher water bill. I miss the higher electric bill. I miss buying four movie tickets. I miss there being no food left overs. I hate leftovers now. I miss running out of apples and complaining how fast Colin ate them, sometimes 3 or more a day. I miss empty bags of pretzels with little bits of salt laying in different spots, like a mark saying “Colin was here.”

I miss his doctors that cared for him. I miss his nurses that laughed with him. I miss his social worker that always checked on him. I miss his triage nurse that always joked with him and knew he needed his blood pressure taken on his left arm and not his right arm. I miss the environmental lady that cleaned his room, her son is now in high school and I hope he is doing well. I miss the check out lady in the cafeteria that was always so patient with me when I counted out change to pay. I miss the parking guy who understood why I lost my ticket to pay because we had been so long inpatient.

But it is so much more. I miss listening to music that Colin exposed me too. I miss new shows and movies that I have no idea exist because he isn’t telling me about them. I miss funny comedians he knew about. I miss learning about physics and astronomy because nobody talks about that anymore. I miss that every time he got in the car, he turned on my seat warmer. I miss washing his clothes and pairing his socks. I miss clothes shopping with him, he had such a good sense of style. I miss Colin with all of heart and soul but it is so much bigger than that.

When you lose a child, you lose so much more. It’s unbearable sometimes. I still have one snack bag of pretzels in the snack cabinet. I just can’t bring myself to throw them out. They are long stale but I can’t do it. I just miss buying those damn pretzels so much.

Not needing to know why

You hear the words your child has cancer and it makes no sense. You think wait, how could he possibly have cancer, he is just a child? Then you start the process of trying to kill the cancer. And it becomes real and everything explodes out of control. There is nothing to do but let it go and hope. Hope to get better.

There is no making sense of it because it is just not something to make sense of. I have learned that not everything in life can make sense. Somethings never will no matter how much you wish it so. Yet the human need to ascribe a reason to bad things or people or events or say, a child getting cancer and trying so hard to make sense of it just leads to so much pain. For me, it is asking, doubting…the what did I do when I was pregnant? Or did I have chemicals in the house that switched something in his cells? Could I have been a better mom? A better care giver? Did that fleeting time I was exhausted and I thought about how tired I am and how much easier my life was before having a child lead to me being punished? Was I selfish, a bad person? What in the world would cause my child to have cancer? Humans like to take the blame. Think we can control things even if that something is a bad thing. That by controlling it, by understanding it, we can keep it from happening again.

I know the truth. We are just not that much in control. And it is a hard concept to accept, to let go of the fact that you will never know. And that sometimes no matter how deep the love, or how hard the trying to understand, there just are not reasons and it can’t be made sense of. Things happen. Very bad things happen. And they won’t make sense ever. No matter how hard you try to understand.

So, I don’t waste time trying to figure it out. Don’t waste time doubting yourself or your decisions because we can’t go back in time. We can only know, at that moment we made the decision, it was the right decision for that moment. And that matters. That counts.

My mind wanders there every now and again and I gently say, no thanks and walk my mind away from it, from the doubt or the trying to make sense of it all. It would not be fair to Colin to waste time on anger. Or bitterness. Or what if’s. We all only have so much energy to use. Colin worked very hard to use his energy to be positive. To do his best to get better. He took the steps he was told to take and he did each one with faith.

Colin’s faith was in trying hard, trying his best. A bad day didn’t define his next day. I have to believe that is what truly matters. Every moment you have, every single second is one you can pick and chose how to use. Not look back and doubt. Not look ahead and try to make sense of it. I witnessed time and again how hard Colin tried until, he just couldn’t try anymore. He didn’t waste time wondering why me. I know he thought it sometimes and on occasion, asked it out loud in agony to whom ever above, was listening. But he didn’t stay in that place, he took himself and gently walked his mind away. He kept faith.

I am going to keep on doing that. Trying hard, trying my best. And some days my best might be just waking up and remembering to breath. I won’t know why Colin died, was it part of a plan? Or just random bad luck? I truly don’t know and I am ok with not knowing. Worrying and being angry about all that stuff only gets in the way of living. And loving. And it is only though loving that I can continue to honor Colin.

When there is no light at the end of the tunnel

Photo by Colin Delaney

Countless times, we have all used the expression, I can see the light at the end of the tunnel, to encourage ourselves to be strong, that a difficult situation is coming to an end. But what happens if you find yourself in a situation where there will never be a light at the end of the tunnel? Your difficult situation is never going to end?

When Colin died, when any parent loses a child, that light at the end of the tunnel forever goes out. Suddenly, there was no more trying to get Colin better. There was nothing new to try. There was no more hope to be a family again, living life and all its experiences. There stopped being a reason to keep moving forward, there was no light to move towards. It was just… gone.

So, what do I do? I ask myself that question every single day. At the start of the day. And again, at the end of the day. What can make me move forward?

The desire to sit down in the dark is over powering, to not see or feel anything because when I look to where the light is supposed to be and it is not there, the feeling of panic is crippling. I would imagine for any parent like me, that has lost a child, the feeling is over whelming to all of a sudden be in a world that feels so very wrong.

I am working so hard to figure out how to live in this darkness and I am beginning to realize that I need to make my own light, find ways to move forward even without that light of Colin getting better pulling me towards it. Colin took this picture in the tunnel at his school, that connects the high school to the middle school. He would walk home though this tunnel. He came home one afternoon and shared this photo, he really liked it. I thought how great, that he has the perspective to look at something like a concrete dark tunnel and instead see the bright light shining in front of him. It also looks like what I would imagine is the stereotypical version of when a person dies and “goes towards the light,”

I am not an overly religious person, I wish I was because then maybe this missing Colin would be eased a bit by believing, without question, I would get to see him again. Yet, if there is a white light at the end of the tunnel of life, then it would sure make sense why life is so damn hard. We don’t look for the light at the end of the tunnel when we are having fun, only when things are crappy. Every day we are all doing our best, to get to where? The end of life? Or to the white light at the end of the tunnel? To something better? I do not know, I wish I did.

All I do know, is I am going to keep trying to make my own light by doing things that create light. Being kind, helping others, laughing when I can. Telling people about Colin. Sharing what I have with others, easing the pain of these kids fighting cancer. Not letting the dark and the unfathomable pain I feel dictate the choices I make but rather realize all this intense pain of missing Colin is stemming from the intense love I have for him. And I suppose, that pain I feel is worth every second of time I had with him.

Until I lost Colin, I never really looked at life as a bigger picture, as I was more focused on the here and now, what needed to be done for the nearer future, not 10, 20, 30 years from now. But boy, I sure think about it now since I have to live the rest of my life without Colin here. I can’t help but think, we are all heading in the same direction to the end of our lives yet, we don’t often stop and reflect on what we want that journey through the tunnel to look like. What we want to accomplish, who we want to be and how will be become what and who we want to be? And it all needs to get done, before we get to that light. I suppose Colin’s death forced me to think about it, at first unwillingly but now with more mindful intent. I would recommend you give it some thought for yourself.

~ Melissa

To Be or Not to Be a Foundation

It was not my original intention when Colin passed away to start a foundation in his honor. I mean, plenty of times I have said, when Colin gets better I am going to do this or do that. But then Colin didn’t get better and everything changed when he died. Honestly, each day is a challenge to just get through. Let alone to manage a project like starting a not for profit foundation, even a tiny one.

But I can’t help feel I am standing at a crossroads. Do I turn to the left and neatly package and put away everything that happened to me, to us, to Colin? Start in a new direction, a direction that doesn’t include him? Or do I keep going on this same road that is filled with memories, so many of them incredibly painful? A willingness to start even a teeny tiny non profit means ripping those memories wide open and weaving them with new experiences. It’s opening up those memories to others. It means a willingness to face head on, every day that Colin isn’t here to be a part of what we wanted to do together. But what if it isn’t about making a huge change? What if it is about just being a small ripple that spreads out, whispering Colin….

I had to look up the definition of foundation. It means, “an underlying basis or principle for something.” Colin knew how precariously his life hung in the balance and he knew when it tipped out of his favor and his life was no longer going to be his to live. Colin’s principle, part of his own foundation was based on a willingness to try each day to achieve the best day he could. Honestly, for him, most of his days were pretty crappy and sometimes the best he could do was to manage a shower. Yet each day, he practiced mental self care, he looked inward to assess what was going to work for him, what wasn’t going to work and he put together a plan to move forward. One, single day at a time. And on his last day, he still knew what was and what wasn’t going to work. What a brave, mentally strong young man Colin was, he is… I don’t think in death you stop being who you were.

I guess it seems to me, I can adopt that attitude too, of taking it one day at a time, see what will and won't work and and start a foundation with the help of a dear friend, and make that ripple. And see where it goes from there.

Dave and I helped build Colin’s strength, not just by being his parents but though the support of others, though community, through kindness and compassion. But very importantly, though accessing quality mental health care that equipped Colin with the tools to turn his pain into power. Everyone working together helped him become more of what he was meant to be and if I can do that for just one other person, then that counts for something and I suppose as I said, it is ok if it starts with just a ripple, whispering Colin.

Please be part of our ripple and help turn those ripples into waves. Those whispers into a loud voice, stronger and louder together. Truth be told, I am nervous and scared. And a bit overwhelmed. I suppose there is truth in the statement, nothing that is worthwhile ever comes easy. And heaven knows, the reasons that stand behind the starting of this foundation are as far from easy as could possibly be. But let’s try, and see what comes of it.

~ Melissa