Friday, September 1, 2017

Heartbroken

Steve, Sadie and I are heartbroken .... 
 

 
Tuesday afternoon around 1pm Seth looked like he was working harder to breath and his chest was "pulling."  Sadie and I were planning to head home for her first day of preschool Wednesday and I noticed when we were about to say goodbye.  We called the nurses in and it was decided we would up his morphine.  We weren't sure if he would settle again like the week before so I headed home with Sadie and told Steve to call me if anything changed or if I should come back.  We made sure that Sadie said goodbye to Seth and gave him kisses on his piggies. 
 
 
Before even getting home Steve called and said I think you should come back.  I gathered a few things at home and headed back to the hospital.  Thankfully my mom came over to stay with Sadie and tackle her first day of preschool and luckily there wasn't any traffic. 
 
I held Seth for hours that night not wanting to put him down for fear of missing something, missing the end. 

He had a pretty restful night but his breathing continued to be the same. 
 
Wednesday morning we changed his diaper and I got settled in the recliner with him again.  We stayed like that ...

 
We had a nice visit with one of our favorite nurses who came in on her day off and in the middle of moving just to see us and Seth.   Around 2pm Steve headed downstairs to get some lunch,  Seth's breathing was still the same.  A little while after he left I saw one breath took much longer but then he started with the same pattern he had before.  A few minutes later he took his last breath, just as I wanted surrounded by love laying in my arms. 
 
We spent hours at the hospital holding him and telling him we loved him and how sorry we were this happened to him.  How could our perfect little boy be gone?  We didn't know how we could ever leave him and we didn't know what to do next.
 
We are all heartbroken and still very much working through everything but we have a strong, sassy little girl who needs us more than ever.  I think Sadie is going to help us as we navigate through finding our new normal.  She misses her brother so much and she asks us if we miss him too.  We give kisses up to the sky every night now to say goodnight to brother.  She doesn't completely understand what is going on but at the same time does.  There will be lots of questions going forward and we will be there for her, it may be through a sea of tears that we answer these questions but our job now is to make sure she remembers Seth and how much he loved her.
 


 
 
We can't say thank you enough to everyone for their support.  Friends, family, complete strangers, acquaintances, Seth's doctors and medical team, and the nurses of 9NW which we will now always think of as family.  This journey has been harder than anything we've ever had to do before and will have to do going forward.  You all made it a little easier, thank you.
 
Now we work on our final send off to our sweet, beautiful little boy ....

23 comments:

  1. My heart and prayers are with you and your family.

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  2. Seth has no more pain. My love and prayers is with you.

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  3. Even though I don't know you, my heart breaks for you. Your little girl has done fantastic parents!! Sending you comfort in your tinge of loss. In doo sorry. -Alison

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  4. My heart and prayers a with you and your family to bad you have to go through this horrible thing

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  5. Thank you Sarah, for sharing your precious, beautiful, blue-eyed boy with us until the very end. Thank you for not sparing us from what cancer looks like for little guys like Seth. I pray that all the memories of you have of him remain clear for you for the rest of your life--that you're able to recall those blue eyes and beautiful smile with ease.

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  6. I am so so sorry. I am just a yarn friend of Erin's, but have prayed for you and your family since I first heard the news. My heart is broken with yours and I will continue to pray for strength for you and your family.
    Jana

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  7. I'm Praying for you and sending you lots of love and big hugs your way! I'm so so sorry your going through this.. wish there was something I could do to take your pain away OXOX

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  8. My heart grieves for you in your loss. Prayers.

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  9. Sarah and steve, my heart is soooo broken for you guys. Seth was so so so so loved on our floor and im so sad i didnt get to say goodbye. If any funeral or wake or anything is opened to the public, id LOVE to come join you guys. Im so sorry for sadie and your family and will pray for you guys. I love you guys!!!! He was my baby boy and my little love. Im so sad about this. 😭💔

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  10. Blessings to you and yours on all your journey's... lifting up

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  11. Profoundly sad. There are no words. Bless your family as you navigate this process we call grief.

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  12. I don't really know the words to say how deeply sad I feel, but all I can think of is how sorry I am in your loss. I am a knitting friend of Erin's and have followed your journey with baby Seth from the beginning through your blog and have prayed for him every day. Something just came over me this morning that I needed to check your blog. It broke my heart as I read through my tears. Please know I will continue my prayers for comfort and strength for each of you. Terri, from TN

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  13. I am so sorry for your loss of your precious baby boy Seth. My condolences to your family. ♡

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  14. Sarah and Steve, I just learned of your family from a friend's FB post. I am very deeply saddened to hear of your sweet baby boy's passing. I am a fellow cancer mom. We lost our sweet baby girl, Isabella, 14 years ago to infantile leukemia. She was 4 months at diagnosis and 11 months when she passed. My heart aches with you both. While your pain is insurmountable now, I promise you that time will dull the ache. Seth will never leave you, he will always be by your side. He will watch over his big sister. Sending love and strength as you navigate the next days and months. I know I'm a stranger, but if you ever feel you need to talk or cry or scream and sob to someone who has walked in these horrific shoes, please don't hesitate to reach out. PM me. Holding your family close in prayer.

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  15. I follow Erin on You-tube and that's how I know of you. I am so very sorry for your loss.

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  16. So sorry for your loss, all my love and thoughts are with you and your family.

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  17. My heart grieves for you in your loss. My prayers are with you and your family.

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  18. I am so very sorry for the loss of your precious son, Seth. Sending prayers for the whole family!

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  19. I am so very sad for your lost, no child should ever have to go through this. Prayers for you and your family. Thinking of all of you.

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