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From Mom

For the past week, I have been trying to write down words that I wanted to share but every time I started, I just couldn’t finish or even complete my first thought. It seems like everyone is at a loss for words. No one knows what to do or say or how to voice condolences and we are all learning that it is okay to not know what to do or say. I don’t know what to say in return either and that is okay. I have also learned that it is okay to not be okay sometimes. It is going to take a while to heal, and we may never be completely healed of this pain and loss that we are experiencing but each day I will continue to make an effort to work towards living our lives without Milo. “Without Milo” definitely hurts each time I say or think of that phrase, but here we are.

Kevin and I have been surrounded by family to help us get through the first week without Milo. We went from having a pretty set schedule of waking up with Wesley, heading to Lurie’s in time for rounds with Milo’s team, spending a few hours there, coming home to play with Wesley all afternoon and put him to bed, then go back to Lurie’s to see Milo and say goodnight. On Tuesday morning, we woke up and didn’t really know what to do. This was the first day we wouldn’t be going to Lurie’s and seeing our son or talking with his team to figure out the game plan for the day. I never thought I’d be thinking of Milo in terms of how many hours, days, and weeks it’s been since I saw him last but that is our reality now. I miss him, I love him, I never thought we would actually be without him. His song is in my head constantly and I watch videos of him over and over again.

Wesley is keeping us smiling when we can and we’re holding him as tight as he will let us. He is the reason we are “okay” – he is so amazing. Wesley would have LOVED to be a big brother to Milo – I think about that all the time. He loves to play with other kids (especially his cousins) and it’s hard for me to think of all the fun times that will be missed now. Wes loves making others smile and laugh and boy, what I would do to hear Milo giggle for the first time. There are a few things I don’t know how to put together, but I have been keeping notes in my phone of thoughts I have or even memories that I have from the last few weeks:

Things I am Thankful For:

--Being able to hold you for the first time, knowing it would be the last time I would be with you physically

--Being able to give you a bath and playing our favorite songs, knowing it would be the last time I would be with you physically

--Seeing your beautiful deep blue eyes, the night before you passed away. You were telling us something and now I have a lifetime to remember your eyes

--Being able to squeeze your perfectly imperfect feet and you would spread your toes really wide. That always made us, and the nurses laugh.

--Tapping your nose three times every time I was at your bedside; it was our little thing for you to know I was there.

--Getting the text from your dad that you squeezed his finger – he was jumping for joy and smiling so big. You made us so proud every moment. Every milestone, you defied the odds.

I know I will always be your mom, but I still want to be your mom so bad. I know you were so tired and I’m so sorry you were tired. I know you knew how tired we were too, but we would have stayed up for months for you no matter what.

To everyone that has reached out and kept up with us on this journey with Milo - you are all amazing and we love you so much. Milo had so many people in his cheering section.


So, for now I will say, I love you Milo, I will always miss you and thank you for making me a mom again.

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Beautiful notes. Kevin and Sarah. You continue to be constantly in our thoughts and prayers. We love you----Ellen and Jim

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Laura Alba Kraytem
Laura Alba Kraytem
Aug 06, 2020

Dearest Sarah and Kevin, you two are wiser beyond your years and yes Milo will always be your son. I am so happy to hear of your joys,seeing Milo's big blue eyes, him squeezing Kevin's finger,and his strength. I would do what you did a thousand times and again. All my love, cousin Laura

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