Until Then….

I recently read the beginnings of a memoir by a 46 year old man that was diagnosed with endocrine cancer. As different as my situation is, I related so much to the cancer experience of this man. The journey from symptoms to discovery to diagnosis….I have walked that path. But as a mother as opposed to the patient, our paths diverged. As I read him describe his “painful” chemo cocktail of etoposide and cisplatin for 3-4 months, tears began to burn my eyes. Not only did Hayes have those exact “painful” chemo drugs, but he also had 8 more chemos over the course of his 8 Month protocol. My sweet 10 Month Old Baby was exposed to those same drugs and more. It was our only option, but as parents you do anything. You do anything to keep them safe and comfortable while at the same time, knowingly giving them poisons that nearly kill them, day after day. But that is our only hope. It is the only weapon we have to fight the monster that is just as relentless as we are.

Looking back over the battle we had, I realize that during that fight, I really didn’t recognize the magnitude of what we were facing. I was devastated and scared, but every day I clung to the hope that chemo would fix my baby. Having hope was the only thing I had control over and I unceasingly held onto it.

I remember so vividly what I was doing a year ago today. It was Halloween of 2016 and Hayes was Home. I woke up early, got my kids in their costumes and excitedly dressed my 3 babies in their themed carnival costumes. Life was beginning to “normalize” and I had nearly let go of all the fear of cancer I had accumulated over the past 8 months. Although Cancer was in the rear view mirror, a deep, hidden part of me knew I was forcing it away; running from the monster that would forever stalk us. But, I ignored it and I have no regrets about my denial…it allowed me to feel peace and happiness and joy which my family so desperately deserved. Life was blissfully naive for a few short months.

I feel like my life is mostly in black and white now. I still smile, my kids still smile and there is laughter. But, that rich deep feeling of life that is seen through saturated color is not felt very often anymore. I sat through my kids Halloween parade today and watched as my kids marched through the halls of their elementary school, proudly showing off their costumes and my babies danced to the Halloween music playing over the loud speaker. I smiled as the scenes unfolded before me, but then it hit, it always does, that Hayes should be here and the magic of another holiday vanishes. It is painful. Steve and I always smile for our kids, but deep down, we want to hide. Sleep away the winter that brings with it all the painful reminders of our sweet angel boy.  

I don’t like to focus on the pain, I really don’t, but this is also our story. Life isn’t easy, unfortunately. But, in a strange juxtaposition, what gets me through these hard days is hope. Hope for a brighter future, hope for a happy tomorrow & most of all, hope that I will see my Hayesey again. Hope is what got me through that original fight and ironically, it gets me through my days without him now. I will continue to slap that smile on my face with a hope that one day it won’t be so forced. With hope that one day I will be able to have a life where Hayes is simply a warm, happy memory and not a painful reminder of loss in my heart. Until then, I hope.

17 thoughts on “Until Then….

  1. I don’t even know how I started following you guys two years ago, but everything about Hayes captivated me. Maybe because I have a son similar in age, but I just fell in love with Hayes and the love that you and Steve have for your children and each other. I think of Hayes often and I love following you guys on IG, for some reason, it gives me hope and reminds me of how beautiful life is. You’re an awesome Mother and you genuinely seem like a great person! I will continue following and will spread Hayes’ name and story. Xo

  2. Jess C

    I really love how you describe your life in blsck and white…really helps us to understand how you are feel g and get through every day. Just keep doing the best you can xx 🙁

  3. Thank you for sharing your deepest heartfelt feelings, just wanted you to know we are here and we are listen. much love to your beautiful family. Tracie from Texas. Granddaughter has pre-b Cell Leukemia, she is 3 yo.

  4. Shirley Evans

    I cannot recall how I came across Hayes’ story but what I can recall is how it touched my ❣ for every moment of sadness when I see his sweet little face on instagram there’s a warmth that you’re lovely family bring in your Insta stories. My beautiful daughter Micha sadly had her angel wings at Six months she was one of twins and even now 26 years on when her beautiful sister achieves something in her life I sit and wonder what Micha would have achieved! You, Steve and your beautiful family are an inspiration 😘

  5. Jennie Gamlen

    It seems funny that I look forward to your posts and your upcoming life events. But then last night before I fell asleep, I thought oh God, Halloween is over…which means Thanksgiving is coming and I know right after that was when you brought Hayes home to spend the rest of his days with you all. And it honestly makes me feel like my holiday season just won’t be as happy with knowing this. So I’m afraid for the holidays too because of this. I’m afraid for you guys and I shouldn’t be. I know you’re strong and that Hayes is watching over you. And he’s there with you. Grief is such a terrible thing. Keep putting on your smile though, because Hayesey is always going to be your baby. 💚💚💚 And please continue to share your memories! Because I just can’t enough of the amazing little guy!!! 🤗👼😄

  6. Katarina Novacek

    I clearly remember that day I found a photo of Hayesey on IG..I don’t know what it was,that bound me to this little boy so much.From that day I visited your and Steves account few times a day just to know the news about him and hoping he gets better.Truly,this little boy has influenced my life like nothing before,i cryed a lot,I smiled a lot,he gave me lessons, what really counts in life, when I had bad times. I want him to be here so much that it hurts!But I believe that this all has its reason and one day You will meet him again and kiss those cheeks again. Love you!

  7. Amy Barker

    So so beautifully written…I have no words just sadness that someone as beautiful inside as you has to walk through this life time in black and white. X

    You are always one day closer to seeing your little boy again and I wish the most beautiful colourful day when you see your Haysey again 🙏🏼

    Sending so much love x 💚

  8. Tori updike

    I have been following your story for well over a year now and was looking at your profile of this time last year…I some how ended up here and was reading this passage and saw what chemo drugs your beautiful boy was given. I’m heartbroken he had to go through that….my husband was diagnosed (2nd time) on Sept 27th 2017 (2 days before our wedding) with seminoma testicular cancer. He is currently receiving cisplatin and etoposide like hayes was, I hate what these drugs are doing to my husband…I can’t even imagine what Hayes went through with this poision in his body. I’m so sorry for the loss of you baby boy. I pray you see him in your dreams at night. Thank you for sharing your story with all of us.

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