Saturday, May 6, 2017

As time goes on

This week was one of the biggest "milestones" we've had since losing our precious Cam. This week, on May 4th, we marked six months since we lost him to cancer. Six months since we've heard his voice, given him a hug, held his hand, played with him and his Transformers. Six months since we said our final goodbyes to our incredible 4 year old son.

A lot happens in six months. As newly bereaved parents, you learn a lot. You learn how to live through the new quiet in your house. You learn how to walk past your son's room without crying. You learn how to get out of bed everyday and somehow put a smile on your face. You learn how to cover how you're really feeling, because even if people come to you and say "how are you today," you know they're just hoping you'll say you're fine and they don't have to talk to about it. You learn to live through the excruciating pain you feel on a daily basis.

Pain. When you lose your child pain becomes one of the biggest constants in your life. You feel pain in everything you do. In every breath you take. Every time you open or close your eyes. The pain is always there. And you try to do whatever you can to overcome that pain. You become really good at hiding it and trying as hard as possible to not let it show.

When we arrived at the dreaded six month mark, my husband and I took to social media to write our messages to Cam, expressing how much we miss and love him. How we are, still, in complete disbelief that he is no longer with us. We write these messages to him in hopes that there is some way that he'll see them and know he is never far from our hearts and our minds. And in some ways, we write them so our friends can share their thoughts, feelings and memories about him. These little notes to him are a way for everyone to come together and support one another.

Among all of the beautiful thoughts and memories shared, one comment stood out. And for the wrong reasons. It read, the pain has subsided but the memories are still there. The pain has subsided. How I wish that were an accurate comment. For me, as the mother is missing her child, the pain has yet to go away. The pain has yet to subside. The pain has yet to be anything but gut wrenching and at times uncontrollable. And for someone to say the pain has subsided, for me, was awful to read. It felt like someone was telling me hey, it's been six months, get over it, I have. It felt like I was alone with my pain and my grief.

As I mentioned, you learn a lot when you become a bereaved parent. You experience a lot. Every day brings new emotions, fears and challenges. Each day is filled with moments of joy, grief and sorrow. You realize that this new life and journey is something that cannot be navigated alone. You lean on your spouse and your friends. And you often wonder who you can lean on or reach out to. There's a strange thing that happens after a child dies. The people in your inner circle change. We've learned that the hard way, with friends and family. There are those who stood by us from the moment we notified everyone of Cam's illness. Those who called, visited, texted or emailed nearly on a daily basis to check on him and us. Those who have stayed with us since his passing, still contacting us almost daily to make sure we know they are there for us. Those who have exhibited unwavering support and love. There are some people we knew, but not well, who have become wonderful friends to us throughout this process. There are others who were there while he was sick, while we went through the funeral service and then slowly lost contact with us, only to become more of acquaintances than the good friends they once were. And there are others who have stayed away from the moment Cam got sick, with little to no contact whatsoever since. I can appreciate that this is not a common or usual situation and that it may make some quite uncomfortable. But never did I think that we would be grieving the loss of friendships as we grieve the loss of our son.

As we near the one year mark to the start of this journey (June 6th will be one year since the day I took Cam to the children's hospital), I feel compelled to tell the people who have stood by us how much their love and unwavering support has meant to us. My husband and I have been, at times, treading water to get us through the days and I feel we wouldn't have made it this far without you. You have made us feel like our feelings and grief our valid. You have helped us learn how to go on with our lives by honoring our son and his memory. You have been comfortable with us when we feel we need to talk about his and share his stories. You have held our hands and been our shoulders when we needed extra strength. You have been our family when we needed you. And for all of that, we are forever grateful. 

Tuesday, March 28, 2017

...another one begins

I remember only bits and pieces of the long drive home from the city. It had been 24 hours. Only 24 hours since my world was shattered beyond repair. My husband and I were in the car, loaded with all of Cam's belongings from the hospital and an empty car seat, struggling to maintain any ounce of composure I had left. I felt empty and felt a longing for my son. I felt like there was a bungee cord attached to me that was trying to pull me back to the room in which he died. To bring me back to June and start the whole process over again. I didn't want to see my child suffering anymore. I just wanted to see him. To touch him. To hear his voice. To see him happy and smiling again. To hold him in my arms. To keep him safe. Somewhere along that two hour drive, the bungee cord snapped. I snapped. I felt like I had truly lost him and that I was leaving him behind.

It was hard. It had only been 24 hours. I sat in the passenger seat, quiet, trying to understand. I couldn't. In some ways, nearly 20 weeks later, I still can't. I sat, with my hands folded tightly in my lap, wondering how I was supposed to go on living without the person who made my life whole. Who gave me my purpose. Who I had spent the last 4.5 years loving, caring for, teaching and raising. As a mom, I had forgotten who I was as a person. I had spent so long being a wife and a mom and I forgot how to be me. Without my Cam, I felt lost. His death had left an incredible hole that I feared would never be filled. While I sat, holding my own hands in some attempt to comfort myself, I relived the previous day, wondering what I could have done differently, if I was able to comfort and reassure my son, if he felt how much he was loved by both of his parents. I thought about how badly I wanted to be with him again, how desperately I needed my son. I felt like there was no way I could go on without him. I had lost my purpose.

At some point during our long drive home my husband broke our silence. He said, "Do you want to have another?" I immediately said yes. And then immediately wished I hadn't. As soon as the word left my mouth, I saw Cam's life flash before me. I saw him at birth, growing as a baby, learning to walk, his smiles, his laughs, his playfulness. I immediately felt like having another would make Cam feel like we were replacing him. Like his life and death meant nothing. Like we could start over as if he never existed. I didn't say anything aloud because as soon as I said yes, my husband's face softened. I sat next to him and chatted about the possibility of having a new baby and the joy a new baby would (hopefully) bring to us. At no point did we discuss when and if we should start "trying." There was no rule book on timelines. We had to be focused on trying to move on with life in a positive way, a way to honor Cam's memory.

December 6th. Only 32 days after Cam passed away. My husband and I were both back to work, trying to navigate our "normal" daily routines mixed with our grief and emotions. Our had become eerily quiet and neither of us knew what to do there anymore. That night, on the 6th, something told me I should take a home pregnancy test. I don't know what made me do it. I took a home pregnancy test and it said "pregnant: 2-3 weeks." I dropped the test on the floor and stared at it in complete shock. I couldn't believe it had happened so soon. And I didn't know how I felt about it. I called my husband at work and told him. He was equally as shocked but I could tell he was excited. I could hear the smile when he talked to me. It crushed me.

A baby is supposed to be a happy thing. A positive thing. But in the initial days and weeks of my pregnancy, I felt remorse, guilt and regret. I felt like I was being pulled in so many different directions. I was missing my son. Missing everything he was. And I was regretting that I was pregnant. I wanted my first pregnancy to be my only one. To have it be something special that was just for Cam. I didn't want to go through it again. I felt guilty. How does a mother get pregnant so soon after losing her only child? How could I possibly do that to him? How would he have felt about it? Did he think I was trying to replace him and forget about him? I spent so many nights crying. Crying because I felt like I was betraying my child and crying because a small part of me wanted this baby. And crying because Cam used to ask if Mommy would have a baby in her belly again. The answer had always been no, that when he was born he was everything we wanted and our little family was complete. I cried because I felt like I had lied to him. I cried because I will never get to see what he would have been like as a big brother.

As with any pregnancy, my emotions have been all over the place. Sometimes uncontrollable. I have been struggling to come to terms with my feelings towards this pregnancy. Somehow, I finally started to feel positive. I started to feel like this is ok. That Cam would be happy. That he wouldn't feel like we were replacing him. Deep down I know and understand that no one can ever replace him but it took a long time to remind myself of that. I still worry all the time. I worry that I will miscarry or end of having a premature delivery. I worry that this baby will have cancer. I have nightmares of going through it all over again. Logically I know it is highly unlikely, but I worry. The farther along I am in this pregnancy, the more I become comfortable with it. I still have days where I felt guilty or regretful but not nearly as often.

We're now 19 weeks in to this pregnancy. We have been fortunate enough to have a few ultrasounds and have been able to see baby moving. We have seen and heard the heartbeat (which makes us breathe a sigh of relief every time). I have been feeling wonderful movements and my husband is starting to be able to feel them as well. Aside from a lot of morning sickness, we have been very fortunate to have a healthy pregnancy thus far and to know we are growing a very healthy baby. We wonder what this baby will look like, if it will have similar features to Cam's, what the personality will be like. As bittersweet as this experience is for us, we know this baby is truly as blessing. We feel this baby is a gift from Cam. His way of telling us we were meant to be parents and that he wants us to keep going. It is his way of giving us back our purpose. Our beautiful family of three will become a family of four this summer. And this new baby has the gift of having the strongest guardian angel.

Thursday, March 9, 2017

As one life ends...

I keep going back in my mind to the day we took our son to the children's hospital. To the day we got his cancer diagnosis, to the day he started chemo, the day he started radiation, the day the oncologist said chemotherapy was no longer an option. All of these days and events play over and over in my head like a horror movie or a bad dream. These days have been playing over and over in my mind for months on end. And one day, one horrific day, plays the most.

Friday, November 4, 2016. Our son, named Cameron by the way (I realized I have never shared his name before), woke up screaming at 3 am. He had been having a really tough few weeks, spending 18 days in the ICU with a fungal pneumonia and being hooked up to oxygen and a c-pap machine. Most nights he woke up crying because he hated the mask. This was the same in the early hours of November 4th. Cam woke up, crying and screaming about his mask. Nurses came in to help us figure out how to help him feel better. Because he was on constant oxygen, he was also hooked up to a machine that read his heart rate and blood oxygen levels. This machine kept beeping. His heart rate kept rising and his oxygen levels kept lowering. The nurses kept raising the oxygen levels, giving medications to help his heart rate and to help his pain control. No one slept that night and Cam was scared. By 9 am, after six straight hours of trying to get the situation under control, the doctors and nurses came in to talk to me. They told me what I already feared. That they were out of options to try to save him and my son was dying.

Those words hit like a tun of bricks. My son, my beautiful sweet Cameron, was running out of time. In this moment, his whole life flashed before me. I saw his first smile, saw him say "mama" and "dada" for the first  time, saw him walk and play. I saw him showing his father every autobot ever made and teach him how each one worked. I saw him loving his family and friends. I saw him being incredibly strong for each poke, each test, each chemo treatment and each radiation. I saw him, so wise beyond his years, laying next to me in the bed. I asked him if he was scared and he nodded. My heart broke. I tried so hard to find a way to take his fear away from him. The only thing I could come up with, while holding back my own fear and tears, was to pick him up and hold him. I asked him if I could and he nodded. I carefully picked up my sweet 4 year old and held him. I held him and rocked him and talked to him. I told him how much Mommy and Daddy loved him. How proud and honored we were to be his parents. How incredibly brave and strong he was throughout his five month battle with cancer. How much we would miss him but promised that we would someday be ok. I told him it was ok to let go. That he'd done everything he was put on this beautiful earth to do. I held him, and rocked him and loved him with everything I had. I kissed his beautiful bald head, held on to his hand and tried to sing him our song as he slowly closed his eyes. At 11:30 am, on November 4th, our son took his last breath in my arms.

The days that followed are a bit of a blur. Our families had flown or driven into town to support us. We held a visitation and funeral. We had our baby cremated. We waited so impatiently to be able to bring him home. Being a military family, we couldn't bear the idea of burying him and leaving him behind when the next posting message arrived. So we brought him home. It felt right to keep him home with us. Somehow it took a small amount of the pain away. My husband and I (with the help of my mom and stepdad) cleaned up all of Cam's toys and home school things. We carefully packed everything in boxes to be stored. Packing up the things that brought him so much joy and gave him such an imaginative outlet felt impossible. How do you take all of these physical reminders of your child and pack them away? But we didn't know what else to do.

Tomorrow it will be 18 weeks (126 days) since our Cam passed away. We have tried to move on with life and honor our son as best we can. We talk about him to anyone who who will listen. We look at his photos and watch his videos. We sit in his room (which was left untouched) and talk to him. We search everyday for signs that he may be here with us in some spiritual way. We have cried, we have yelled, we have wondered why this had to happen to our son, to us, to our family. We have asked ourselves how we could have caught the tumor sooner, what we could have done differently with the treatment. We have questioned our parenting and our time spent with our son. We have blamed ourselves for what happened to our child. We have begged ourselves and each other for forgiveness for something that was completely out of our control.

One of my coworkers recently asked me what the hardest part of this is. At the time, I told her it was grief coming in waves. Coming when we would least expect it. Since she asked me, I have been thinking it over. The waves of grief are hard, yes. But the pain of knowing my son is gone and I will never get to hear his voice, hold his hand or play with him again is harder. Knowing the my son will be forever 4 years old is harder. Never getting to watch him grow up and become a pilot. Wondering what he would have been like in school, who his friends would have been, what activities he would have chosen to be involved in is harder. Never getting to see him graduate from high school, fall in love, get married and become a father is harder. Knowing that his life is forever frozen, 4 short years after it began. 

Mommy and Daddy love you Cam- to the moon and back and all the stars.

February 16, 2012- November 4, 2016

Monday, September 5, 2016

Back to school....or not.

All of our friends and their littles are prepping for the first day of school tomorrow.  Tomorrow school be our son's first day of school too. He's 4 1/2 years old and his first day of junior kindergarten is tomorrow. Instead of going to school, we are going to the hospital to get chemo. As I sit here preparing my home school activities and make my plans, I am reminded of how different my life has become.

Three months ago I was working full time, teaching and working as an educational assistant and planning to have a great summer off with my son. It was to be the last summer off before kindergarten and before I go back to work again. We had plans to go to museums and have play dates with friends. I had already purchased my son's personalized lunch box for school and was getting ready to order labels for his things. As an educator and the mom of a brilliant little boy, I have been looking forward to him starting school for a long time. I was so excited to how he'll flourish within the walls of the school and to see how he'd grow and succeed.

Now, I am planning a home school curriculum with as many games and fun activities as I can, while I try to make up for the fact that my 4 1/2 year old won't get to go to school this year. That his cute personalized lunch box is now the home of many of his robot toys. That I don't have to order the adorable name labels I had picked out. I am trying to make up for the fact that he won't get to meet his teachers and meet new friends. That I am going to be mom, teacher and playmate.

I now have to explain to my son every time we drive by his "new school" that he won't get to go this year. That because of his special medicine and his cancer, he has to stay home because it's not safe to go to school.

While I'm so very happy for all of my friends and their littles who are beginning their school journeys or who are  heading back to school, I am heartbroken for my son. I wish things were different for him. My heart just aches for all of the experiences he will miss his year and the friendships he won't get to create.

Saturday, August 13, 2016

A Mother's Mind

When your child has a cold, you give them cold medicine. A headache gets Advil. A fever gets Tylenol. A scrape gets a band-aid and a kiss. A bad dream gets a cuddle in bed. You do anything you can to make the aches and pain go away. You keep as positive as you can for your child so they aren't scared but your mind tends to wander. Mine does.

Cancer is a different kind of story. I can't put a band-aid on, kiss it better and make the monster go away. I can sit and hold my son's hand as he gets chemo therapy. I can give him a kiss as he drifts off into a medicated sleep for radiation. But I can't take it away. And as positive as I stay for him, I can't stay out of my own mind.

My mind has been my enemy since we found out our son had cancer. It wanders, it assumes, it expects the worst. It creates scenarios that (I hope) I never have to experience.

Over the last two months, my mind has shown me nightmares. Like I've said before, sleep isn't a common occurrence in my world these days. For a long time, at the beginning of all of this, I would close my eyes at night and see a casket. Every night there was a casket. And in that casket was my baby's beautiful, lifeless body. I would picture myself standing next to it, dressed head to toe in black. I would feel myself in sobs, tears forming in my eyes while I tried to fall asleep. Other nights we would be laying in his bed at home, watching him take his last breath. I've seen myself laying on his bed, holding his blanket and favorite bear, going days without eating or moving because my heart has a hole in it. Or laying at his grave site, telling him stories about the things he's missed. I could feel the emptiness so much that the dream felt real. I closed my eyes and watched my son die more times than I can count. I would lay awake in bed for hours at a time, scared to close my eyes and scared to fall asleep.

The mind is an interesting thing. For me, as a mother, I want nothing more than for my child to be happy, healthy and alive. I want to take away his hurt and his sickness and let him be a regular, four year old little boy. I want to do everything I can to keep him safe. My mind wanders. It creates terrible, scary and horrifying thoughts. I can push them out now, write them down for everyone to see and be ok. And when I can't, I watch my son and I get a glimpse of his mind instead.

A child's mind. It is beautiful, playful, innocent. Powerful and contagious. It is in my son's mind that I can find comfort and happiness. His mind doesn't see him being sick and in pain. It doesn't see the stress he is going through every day. His mind sees playfulness and joy. He wakes up everyday and wants to play. He can spend an entire day playing with his Transformers, playing the smelly foot game and giggling with us. He can walk in to the hospital playroom or to the "skating rink" and be ready to play. He can talk about going home his numbers go up and do it all with a smile. He lives each day for the moment, that precious moment where he learns to transform a certain bot or takes an extra few steps down the hall. He lives for his trips to the toy store and eating gummies. He doesn't look ahead with distain or fear. He looks ahead with wonder and curiosity.

My son's mind. It's innocent. It's powerful. It's contagious. His positivity and optimism are incomparable. His strength and stoicism are magical. His mind is the reason my mind has allowed me to see past the dark. To see past the terrifying. To see past the hurt and the scared. His mind lets me see the light, the happy and the proud. His mind lets me feel hope.

Wednesday, August 10, 2016

Our New Normal

It's been a really long time since I've posted. And since I've been completely unable to sleep and have felt the urge to write about why. Sleep hasn't been something that comes easy over the last couple of months but tonight is one of the worst for some reason.

I have a beautiful family. I'm not just saying that. I have a husband who treats me like the most important woman in the world. He's loving, caring, compassionate, funny, handsome and kind. He listens to me and puts up with my silliness. He's strong and is my rock when I need him to be. And he's someone I am proud of and proud to be with. I have a son. I have the most incredible son. For 4 years old, he's brilliant. He's sweet, funny, beautiful with his blond hair and blue eyes. He's smart, compassionate and wise beyond his years. He is the epitome of an "old soul" and is my absolute hero. I am, because of these two boys, the luckiest woman in the world. My world with my boys has been nothing short of my version of perfect for as long we've been us. Until now...

Cancer. Just typing the word is hard. It's a scary word. It's sinister and depressing and unforgiving. It's the last word anyone expects to hear. Ever.

Cancer. Your four year old has cancer. These are words my husband and I were told 63 days ago. We brought our son to the hospital with what we thought would be arthritis and we were told he had cancer. A malignant rhabdoid tumor to be exact. This is a very rare, very sinister, very aggressive, very lethal type of childhood cancer. And our baby boy has it. He has a large tumor on his tailbone that spread to two more places in his tiny body. Which puts it at Stage 4 cancer. Our initial meeting with the oncologist was horrifying. She told us this type of cancer is so rare that it only has a 25% survival rate. Because of it's rarity, there isn't enough information out there to come up with a solid treatment plan so she gave us two treatment options and we had to decide between them. We are not doctors. We're trying to come to terms with the fact that our baby has cancer. How do you even begin to do that? And now we're being asked to choose a treatment plan. I asked what would happen without it. At that moment, the idea of putting my baby through any more pain was just too much to bear. So I asked. And was told that without treatment, my son wouldn't live more than a few months. With treatment, at that time, we have maybe a few years. Neither answer was what I wanted but we chose what we hoped was the more aggressive option.

Over the last 63 days I have watched my son. I watched  him stop walking. I watched him stop being able to control his own bladder and bowels. I have watched him stop playing, talking and eating. I have sat next to him in countless hospital rooms, wishing I could take his place and take his pain away. I have prayed to whoever is listening to me to trade places and to help him find the strength to get through this. And to give me the strength to be the mom he needs me to be. I have cried myself to sleep night after night, have had to walk out of the room so he can't see me upset. I have had to give him medicine that no four year should have to take, let alone know how to pronounce. I have watched my husband, my strong and amazing husband, give our son countless catheters to help him empty his bladder when he couldn't. I have watched my son be put to sleep for surgery, MRI, CT scans and radiation. I have watched my son be fed through an NG tube. I have watched my son, my beautiful four year old boy, never stop fighting his fight. And I have watched my family grow stronger and closer than we could have ever imagined in the darkness days we could have ever imagined.

Over the last 63 days I have watched my son endure extensive chemotherapy and 25 radiation treatments. Twenty five treatments on his tiny little body. And I have watched him do it all with a smile on his face and a positive attitude. He has more strength at his age than anyone I have ever met. He has gone through these days, having endless tests, bloodwork, doctor visits, catheters, and medications without asking why. "Why did this happen to me, why do I have to do this?" Instead, he says ok. "Ok Mom, let's go to radiation." Yes he has cried, but only when the nurses take the tape off of his port-a-cath and when his tube bothers his nose. He has cried because his back has hurt him where the tumor is or when his feet hurt because of the chemo. But it never lasts long and he always finds his happy.

Though we don't know what is happening on the inside and won't for a few more weeks, we are watching our son exceed expectations with his treatment and are watching new milestones every day. Just last week he started walking again and this week, without holding our hands. He has regained all bladder/bowel function and we are happily changing numerous daily diapers again. We are watching him be more playful, happier, more alert and a bit friendlier to the medical staff (but who can fault a kid for being mad about getting pokes!). We are watching him grow and blossom into an incredibly strong little boy.

Cancer. No one ever expects to hear the word. No one expects a doctor to tell them she thinks it may take their son's life. It is the most terrifying and traumatic experience in any parent (or person's) life. It brings out the worst feelings, a certain darkness that can't really be explained. But in that darkness, my family has found hope. We have found strength and support. We have found love and friendship. We have found ourselves and each other. And we have found a little boy who will hopefully continue to exceed expectations and continue to fight his incredible fight with the same grace, strength and stoicism he has had thus far.


Monday, April 18, 2016

A message to my bully.

A message to my bully.

We were friends. Good friends. And then we weren't...

For the last number of years I have done wrong to myself by letting you bully me. I let you turn my life upside down. I let you make me feel poorly about myself. I used to say I moved here to learn that I was mean and shouldn't have friends. I let you make me feel like that. But now, years later, I have a message for you.

I'm sorry.

I'm sorry for making you feel I was worthy of being bullied. That I wasn't someone you could continue to call a friend. To make you decide you could leave me in a lurch and proceed to treat me like I was someone who was nothing to you. I'm sorry that I made you feel your next actions were ok.

 I forgive you.

I forgive you for treating me badly. For bullying me in front of coworkers. For talking down to me in front of clients. For belittling me, harassing me and outright ignoring me in staff meetings. For publicly speaking badly about me at mess dinners. For making sure I know you're talking about me at the ball. For making me feel like I was alone. For seeking out my friends at parties and pubs and confronting them for being my friend. For assuming (and telling them) that they must not like you because they are friends with me.

And finally, thank you.

Thank you for taking yourself out of my circle of friends. And for showing me who my true friends are. Without your decisions, I may not have been able to take the negative people out of my life and surround myself with positive and true friends.

The Girl Who Won't Let You Win