Blake · Family

The days after diagnosis

After you’ve been told your baby has a fatal illness, nothing in the world makes sense. Everything is wrong, so very wrong. I think back on the first couple of days after we found out, which wasn’t that long ago, and I don’t remember a lot. Obviously, a ton of crying happened… a ton.  I cried so much, all my tears just stopped coming out. AJ Visit and Zoo 007 My mom and sister kept bringing me water to prevent dehydration and because I still needed to feed Blake. I remember telling my mom I was in physical pain. I hurt all over. It was surreal. It was horrible.  Jeff kept telling me he felt like we were on the outside looking in, like we were watching an awful movie.

Sometimes it still feels that way.

It was either the day we found out or the day after.  Jeff and I were alone with Blake in our bedroom. She was asleep.  I held her close, letting go of everything I was trying to hold back. I felt so broken and helpless.  I can’t explain what it feels like to know there is absolutely nothing you can do to save your child’s life. Mamas are supposed to protect their babies, no matter what.  I kept telling her I was so sorry that this was happening to her. I felt like that was all I could do. I was repeating over and over, “I’m so sorry baby. I’m so sorry I can’t make it better.” After telling her too many times to count, she opened her little eyes.

One of my favorite looks Blake has is right as she wakes up. She looked at me and smiled her perfect smile. My tears continued to fall, but along with the pain, right beside it, I felt something else.  I realized, in that moment, she was okay.  I will always be her Mama; I still have today, tomorrow and hopefully the next to be her Mama here on Earth. I can love her, play with her and enjoy every second I get with her. Even in the midst of all the heartache that’s what I try to do.

One of my very good friends has someone in her immediate family with terminal cancer. Before Blake had a diagnosis, she knew how much I was struggling with the unknown; anxiety, fear over what might be. One day, she said to me “I know it’s so hard but you have to try to live for today and today only.” I thought she was insane because obviously that’s just impossible to do, even though I saw her doing it.

After everything we’ve been through, she was right then. She’s right now. I’ve learned it is the only thing we can do. Jeff and I try so hard every day to pull ourselves out of the darkness that can swallow us up. It’s extremely difficult, but Blake needs that from us and so does Kenley. We’ve been trying to enjoy our life as a family of four. Blakey is still healthy enough to go most places, just for shorter periods of time. We’ve been to the beach a couple times; recently, we went to the zoo. We even run to Target or the grocery store on a rare occasion.

There are days when I can’t see past the darkness. It is with me all day long and there is nothing I can do about it. On those days I rely on my mom, my sister or Jeff to help me more. Those are days when I hold both my babies as much as I can and just do my best.

11 thoughts on “The days after diagnosis

  1. I was laying in bed and you guys were on my mind. I was thinking through the thoughts you just wrote, wondering how on earth you survive the pain of knowing. I knew, but only for a few weeks and even then there was the constant hope of “Maybe he’ll get well…”
    I wish I could tell you something, anything to help. My heart breaks for yours – I know what an amazing mama you are and how much you love your girls and this is just so hard to watch you both go through.
    You are loved and prayed for here. ❤️ If there anything I can do, if you need to talk or vent or just ask questions about anything, I’m here.

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  2. Everytime you post about Blake I read it and as I read it and cry I find myself hoping it just isn’t real, that no parent has to go through this. I’m amazed by your strength, I don’t think I could be as strong. Thank you for sharing, I’m sure it isn’t easy to do.

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  3. Stephanie as a mom my heart breaks for you. I can’t imagine going through what you are going through. Every time I read your blog I find myself in tears. Thank you for sharing. And please know my prayers and thoughts are with you and your whole family. Sending you tons of love and warm wishes. Wanting to wrap my arms around you and give you a big hug. Stay strong. Xoxo
    God bless

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  4. Living in the present moment is really all there is but for most of us, in our lives , we really don’t because we don’t have to. Coming face to face with this concept comes from pain and the sure knowledge of powerlessness. So good that you are not fighting. Clearly your energy is being better spent in ways that will help you, your beautiful little family and others you may not ever meet. You are incredibly strong .

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  5. I read this tearfully, Stephanie, not only for your grief and sadness which is bigger than huge, but also for the wonder you are able to find in Blakey’s sweet smile , her bright eyes, and her lovely little being. You and Jeff are walking this path with such grace and generosity of spirit. Thank you for being you and for….just being you! You precious family will always be just that…

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  6. Hi Stephanie, your dad is my cousin…my mother Marian is Uncle Gerrys sister.
    My husband died by suicide in January. I know about the darkness that you speak. It takes everything that I can muster up to focus on today…but it is what we must do. I thank you for your blog…you are a very brave and strong woman. Your blog has helped me immensely. Thank you
    Sue Kalinowski

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  7. I read these posts and tears just stream down my face. I think about you guys every day and I can’t imagine how crushing this is. But still you shine and share and find the words and the beauty and love in every moment. You are so eloquent and your family is so beautiful. Thank you for writing. Love to you and Jeff and Kenley and Blake. And also to Lindsay and Simon and Kellan and Cynthia and David. I’m sending something to you all in the mail, it may seem silly but… Well actually if you giggle that’s good too. Just know that I am sending love your way, every day.

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  8. My thoughts are with you and your family. You will find strength where you least expect it and will treasure every precious moment you have.

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  9. Stephanie, as a prehistoric friend of your mama, I read your posts in anguish. And yet, I am uplifted by your courage as you bravely share this tragic story. I am reminded that your daughters are incredibly lucky you are you, that their precious lives are so fiercely guarded by and nurtured by you.

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  10. Stephanie, as a prehistoric friend of your mama, I read your posts in anguish. No mother should suffer this way, no daughter of my friend should. And yet, I am uplifted by the courage with which you share your tragic story, the raw truth moves me and I am in awe of your fierce love. Since we both know there are no words that can make anything better, I will just say I think your daughters are incredibly lucky that you are you.

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