It Brought Me to My Knees

I remember the day we got the call. It was a busy Monday evening and I was making dinner. Steve had just walked in the door from work and the kids were doing homework. It was a typical crisp, fall evening. My phone rang and on the caller I.D. it said Primary Childrens Oncology. My heart dropped. To be honest, it always did when that name popped up on the caller I.D., but Hayes had just had an MRI and a permanent shunt placed. He had been vomiting a lot so I was worried they were going to have us check Hayes back into the hospital and have him observed. I didn’t want to go back.  I hesitantly answered the phone and there on the other end was the all too familiar voice of Hayes’ oncologist, Dr. Bruggars. The kids were loudly playing in the kitchen behind me and I heard the doctor ask if I had a second to talk. I told her that I was listening and she continued on with our conversation. She asked me how Hayes was doing and I downplayed his vomiting. I selfishly didn’t want her to have us come in because I knew it couldn’t be that big of a deal. Thanksgiving was 3 days away and I wanted our family together for the holidays.  

I remember so clearly, she told me, that they have been looking over Hayes’ MRI and the information she had to tell me couldn’t wait. She explained that Hayes’ cancer had returned. I immediately dropped to my knees. Never in my life have I collapsed in fear, but in this moment I dropped to my knees, at the foot of my kitchen stove in complete horror. I listened as she continued and the tears began to flow. It was at that moment that Steve walked in and found me on the kitchen floor crying. He of course began panicking. The kids ran in to see me and I am sure the image of their mom shattered and collapsed on the floor will be an image that is seared in their memories forever. Steve asked me what was going on and I mouthed “it isn’t good” as I let out a moan of pain. Literally, pain, I felt actual pain in that moment that had taken me to my knees and I was trying not to throw up. Steve shuffled the kids out and returned to my side and rubbed my shaking body as I cried and listened.  He didn’t know the conversation I was having but he knew it was awful and he began to quietly cry next to me.

I vividly remember thinking, well, we did it once, we can do it again, we are fighters, but then she broke me down further. She said that the area that the tumor was located was in an area of the brain stem where surgery was not an option. She explained that she didn’t know how long Hayes had. Chemo was not an option and we could try radiation to buy some time. But that is all it was, buying time.  I remember her saying she was worried about him being uncomfortable and dehydrated and wanted me to have him admitted to get him on fluids and pain management meds. My hands were over my face and I writhed on the floor, angry and devastated in utter heart broken tears. She said they were getting a room ready for him in the cancer unit and to head up as soon as possible. I don’t think I said a word, but she definitely heard my crying moans in the background. She ended the conversation apologizing. She said she was heart broken too. 

The phone clicked off and I dropped it to the floor and let out all the wails I had held in during our one way conversation. Steve picked me up and sweetly told me we needed to talk in our room away from the kids so that they didn’t have to be scared. He carried me up the stairs and set me on the bed. The door closed and I began hyperventilating as I told him the news through shallow breaths and tears. I remember so clearly what I said. The first time I had ever said the words, “Hayes is dying.” For the first time ever I realized I didn’t have much time left with my boy. The week before we had been in Disneyland and now here we were, 7 days later, realizing that our perfect baby boy was quickly preparing to leave his earthly body and we just had to watch and wait. There was nothing we could do to fix it.  

I remember asking Steve, what was the point of this past year if all it did was lead us to this point, having to let go of our precious boy. I couldn’t bear it and anger rushed into my heart. I was angry at God because I had had so much faith that Hayes was going to get better, that he was going to live a long boring life. My faith seemed to make no difference in the outcome. I knew I could never forgive God for taking my boy.  

We packed our bags and through the tears made one of our last trips up to Primary Children’s hospital. Hayes was very uncomfortable and now that we realized it was serious, we were desperate to get him comfortable.  

We walked through the doors of the cancer unit and were welcomed by the familiar faces of all the nurses we loved. They had heard the news and they greeted us with tears and hugs. I am sure they had seen this so many times before but they made us feel special and I appreciated the love that they showed for Hayes. Hayes had left a mark even on the nurses that see these sick kids everyday.


They hooked him up to an IV and started the flow of morphine immediately. It was such a relief to see him sleep. All I cared about in that moment was giving him comfort. Our poor sweet boy.  

We turned off the lights to let him sleep and squished onto the teeny little pull out twin bed for parents. We held each other and cried. We cried and cried and hugged. I remember when we finally spoke and for the first time in a year of fighting, we shared our fears honestly. We realized that to protect each other, we had never been completely honest and had always just reassured each other that Hayes was going to be ok. When deep down, my biggest fear during all of it was that if we lost Hayes I would lose Hayes and Steve. I never worried that I would lose Steve physically, like Hayes, but I was scared to death that Steve was never going to be ok again. That I would never see him smile again. If we were going to lose Hayes, I needed Steve. I couldn’t do it alone.

I remember Steve telling me, “You know what the point of all of this was. The point was that we got the best year of our lives. It was a gift. It was a gift from Heavenly Father. He did not forget us…he gave us the gift of Hayes!” In that moment the anger left me! I felt a rush of sweet gratitude. A gratitude I had never felt before. How lucky were we? Some people live a lifetime and never have the chance to meet, let alone love, a warrior like Hayes. He was our son and a part of us! Forever!! We were heading into complete devastation still, but it didn’t take away the fact that he was a gift! Hayes was a gift to the world!  Our family was going to be ok, with Hayes watching over us from heaven.

For those that question our motives in life and question how we can possibly be ok after such a heartbreaking loss, this is why. Hayes is our reason for everything. He continues to be a gift and we will continue to share him with the world.  He is our motivation and at those moments I ask myself why, he is there patting my back and telling me to keep going.  This is all for him. He wants us to change the world of childhood cancer and I refuse to stop until that happens.

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56 thoughts on “It Brought Me to My Knees”

  2. Cami Saari says:
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    Wow. Your strength amazes me. And as for Hayes. My oh my, truly an angel was on this earth. Tears are flowing, but more out of the lack of comprehension I have for what a warrior he was through all of his trials. He fulfilled his mission in earth and is watching over you, and probably doing a lot of fun things that his body wouldn’t let him do here😉❤️

    Liked by 1 person

  3. Anne Jachim says:
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    I love that you know why Hayes was here. I also know he was given to your family because you would change something. That through not just Hayes but your whole family the good that would come. Your strong enough, your an awesome team and you’ll make good things happen. I know you will. Ignore those who don’t understand the journey your on. It’s not their journey. God bless you and your sweet family. Stay strong and know you really do have Hayes Army behind you!
    Annie,💚

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  4. Wendy says:
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    Savanna, your words hit home like a rock to the face… These same feelings, gut wrenching feelings flood my brain… But your words of wisdom of how these precious kiddos are a gift and how lucky are we to have been included first hand is beautiful.. it’s a hard Struggle to let go, and watch our babies fly to heaven, but to know they are still with us, an no longer suffering is a blessing . Of course we want our babies here on earth, but to know that we got the precious moments to love them and learn from them is beautiful… Crying many ugly tears…. Thank you for always reminding me of the brighter side… Love hugs and joy to you!!!

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  5. Nickie says:
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    I sit here crying while reading this. My son is the same age Hayes was when he passed. I can’t even fathom what you went through. I am amazed at the strength that you have and the peace that you have. I know that type of peace only comes from our heavenly father. Thank you so much for sharing. May God continue to bless you and your family.

    Liked by 1 person

  6. Mindy says:
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    You are a very strong women and above all a strong mother! Hayes is very proud of Steve and yourself for what you both continue to do to keep his memory alive and to make awareness of childhood cancer!! I read this blog at work and cried and cried. I’m so sorry for y’alls loss. I continue to pray for your beautiful family and Hayes. Keep up the amazing strength you have!!!!

    Liked by 1 person

  7. Jess C says:
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    Savanna, I am sitting here ugly crying too. When you shared the news that Hayes’s cancer was terminal, this is what I imagined you were doing. I was so devastated for you and Steve, I had many sleepless nights worrying about a family I had never met. I was worried for you and Steve as a couple and I am so glad that you seem on the same page and are moving forward not only as a family, but as a couple. I am so glad that Hayes is free from pain, but I am so sad that all that pain is now in your heart. I know that because of the kind of mother and woman you are that you are glad the pain is now yours and not your sons. I love you all and am just so sorry.

    Liked by 1 person

  8. Ann says:
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    Here I sit, next to my sleeping two year- old, with tears all over my face after reading this post! I don’t know you, but I admire you and your strength. Of course Hayes (the sweet boy that caught my eye on Instagram a few months ago because I thought he looked a little bit like my Vide, born in April 2015) spent his wonderful life with you guys. He knew that it was a wise choice. You guys seem to be amazing, and I love being able to follow your story on social media. Lots of love from Ann in Sweden

    Liked by 1 person

  9. Brittany Diggs says:
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    We forget to have gratitude in the “boring everyday” far too often as parents… My eyes were flooded already but when I got to your words on just wanting to expect a long boring life for sweet Hayes, too… I found myself praising God through sobs for the everyday mundane. The “same ole same ole” that if faced with losing would be unthinkable. The up all nights, tantrums, and oh-my-gosh another meal to make… thank God for those precious, heavenly moments. And THANK YOU for the reminder. We should be so lucky to have a long boring life, nothing could be truer! I pray for you and your family to passionately keep on your path of changing childhood cancer and using your story to better the wold! I read a book recently that said “pain gives you a microphone”, and it’s so true. God is using your heartbreak, He’s using your amazing Hayes to open people’s eyes. Thank you so much for your inspiring bravery! Your family is SO unbelievably blessed to be led by someone as strong as you are.

    Liked by 1 person

  10. Jan M says:
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    Oh Savanna – I just want to hug you so tight.

    Thank you for sharing Hayes with us all. We love him so much in this house & as you know we talk about him regularly. Hayes has helped me be a better, more patient parent – he taught me to live in the moment & try enjoy life every day.

    Xx

    Liked by 1 person

  11. Danitza E. says:
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    Hayes definitely came to this world for a special reason, imagine I’m here miles and miles away in Chile, south america reading this with tears in my eyes. What a special gift he was..please keep the fight!

    Liked by 1 person

  12. Erin Kennedy says:
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    Today when i saw your post on FB I thought “I don’t want to read this” It will just make my day of struggles even harder. But I decided I wasn’t going to let the fear win. I needed to hear this….. Hayes has touched me personally. Our daughter had cancer last year and it was probably the hardest thing ( and i though i new what hard was) watching her go through. To see Hayes and hear his story I have NO doubt that God had an AMAZING plan for him on this earth and he chose you to be his parents knowing that you will continue his legacy. I just love how God works….in Mysterious ways and today i needed this. I know that although we are faced with hard thing and hard choices, God has not forgotten us, he has not left us, he is not mad at us or punishing us. He is just making us stronger and helping us push through so we can do great things. Thank you

    Liked by 1 person

  14. Cindy says:
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    As I read this, I sob thinking of the pain he endured and the pain of your family’s loss. I couldn’t imagine having to go through this awful pain. Probably the worst kind of pain a person could feel is the loss of your child. I thank you for sharing your story because Hayes will live in my heart now too forever. Such a precious angel, he won’t be forgotten and now loved by so many people thanks to you. I will be sure to hold my babies extra tight and be thankful for having healthy children. We need not take things for granted. You truly are a special mamma.

    Liked by 1 person

  15. Melissa says:
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    I remember hearing about you all when Ben was first diagnosed on November 1st. I was amazed at your strength. I continued to follow your story as you found out more and more what was happening with your sweet boy. We spent most of the month of November inpatient as Ben got his first round of chemo and subsequently neutropenia fever, infections and PICU stays. I was here alone on Thanksgiving as so many families were home being happy, all I could think about was how unfair it was that I was stuck here with my very sick little boy. Then I remember at some point after that you had posted about Hayes and what was going to happen and I ugly cried. I kept putting myself in your shoes and wondered what I would do, I wanted to come find you in the halls on the 4th floor and give you a hug. Even though I know it probably would not be much solace. As I look at you now, you’re so strong and I hope to be that strong as we keep fighting this thing. Cancer truly sucks!

    Liked by 1 person

  16. Christine Brown says:
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    Such a beautiful piece of your heart. Sweet sweet Hayes is remembered by so many! I’m so sorry for all of the pain you had to go through, yet thankful you had the joy of having Hayes as long as you did. Much love to you.

    Like

  17. Saudade Smith says:
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    Thank you for the gift you are sharing with the world. So often families turn inward and close ranks to protect themselves from the painful reality they are now living in. There is no judgement in that and I would likely do the same. You and your husband have chosen the painful journey of sharing what losing Hayes has changed in your reality with so many people. No one gets to ask how you are able to do this because it just is what needs to be done in order for you to honor Hayes. He has touched so many lives. I shared with your husband the other day that when I find the right words I will share with the two of you just how much your son has touched my life and changed me forever more. I think of you and your family often. Keep on doing you, and do what you do.

    When you get a chance look up the word Saudade. I have it tattooed on my wrist to keep me grounded and honor the journey through grief that I am on.

    Much love and please don’t ever explain yourselves. Honorable and transparent living needs no words.

    Liked by 1 person

  18. Shaylin Crandall says:
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    Seriously sitting at my desk at work bawling. I love that you are sharing such raw emotions and feelings. Thank you for this! Your writing is beautiful. Your story is beautiful and Hayes is the most amazing hero, warrior and kid I have ever read about. Maybe one day I will get to meet your family, who has not only inspired me, but convinced and proven to me that life IS worth living and that there is beauty in tragedy if you look for it.

    Love and hugs to you guys!!

    Liked by 1 person

  20. Rebekah Botero says:
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    Reading this a song I rock my first born son to sleep. Oh, the tears. I found you all on accident on instagram… I prayed for Hayes every day, and cried so much when he passed on to be with our Heavenly Father. I cannot imagine your pain, and I often think, how would I have responded in this situation? I know God is proud of you all. He sent you the sweetest little angel baby and with him He touched many lives. I pray that you all will always lean on Him and trust in Him. As cliche as it may sound, He truly does have a plan… maybe He will use you to get #morethanfour, I don’t know. Just know that there are people all over the world that loved and still love your sweet boy, and are praying for your family. Best of luck with the congressmen tomorrow! May God richly bless you all.

    Liked by 1 person

  21. Roberta says:
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    Thank you for sharing this. My child’s brain cancer has just come back, and I’m struggling with wondering if this year of treatment was for nothing. I am angry at God that this has happened to our only child. I worry that I can’t handle what our future might hold.

    The optimism that both you and your husband use when talking about your experience with Hayes gives me hope. Thank you for your blog.

    Like

  22. Lisette Leyva says:
    Reply

    I read this as I was nursing my daughter back to sleep. She hasn’t been sleeping through the night and I’ve found myself getting angry. Angry that she won’t stay asleep. Angry that I have to wake up to feed her. Angry that there are still dirty dishes in the sink. What a perfectly boring life I lead. I’m sobbing, tears flowing from my eyes right onto my perfect baby girl’s face. Thank you for your words and your strength. Thank you for reminding me that waking up at midnight to feed my girl is a gift. Your beautiful boy is a gift. And your grace is, I’m sure, led by his sweet memory. Thank you💚

    Liked by 1 person

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