Same Thoughts, Different Day

Grayson will be 3 1/2 in just a few days. It’s hard for me to process this, and not just because he’s getting so old (he’s getting so old!), but because of how drastically different 3 1/2 year old Grayson is from 2 1/2 year old Grayson.

This was Grayson just a year ago, and then today.

Some may not notice the significant change in these images, but the difference to me is startling, crushing. And these are just pictures. This disease just keeps on taking my son’s life, little by little. Sometimes it steals chunks at a time, like that horrible day last April. But most of the time it’s tiny pieces- his thumb sucking, his head control, his ability to roll over easily, and his smile. He still smiles, but not often, and we have to really work for it.

And his eyes. The eyes that used to captivate and sparkle are now sad and tired. Tired of the vomiting, tired of the pain. Tired of hospital stays and so many needle pokes.

I’m tired too. I look at Grayson’s future and much of it looks bleak: more hospital stays, pain and uncertainty for a boy whose body is getting bigger, but less functional. And yet, that future must be what the future is, it has to be. The alternative is too unbearable to wrap my brain and emotions around.

I know I write about this all the time, but this is where I am stuck. I need Grayson’s life to mean something good- for him. I want him to wake up every morning and be glad to be alive, despite his body that can’t lift itself up and violently vomits its stomach contents while his nurse or I hold him tight. I want him to enjoy the sun on his face when we go to the park.  I want him to feel secure when he hears the voices of the people he knows, even though he might not be able to see us. And I want him to believe, like I do, that every day, no matter how hard or painful, is worth fighting for.

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10 thoughts on “Same Thoughts, Different Day

  1. Elizabeth, you are one amazing woman. I can't even begin to imagine your struggles, but I do know that God picked you to be Grayson's mom for a reason. Continued prayers for you and your sweet family. ❤

  2. I have no words. Just crying and feeling helpless and inspired. You are amazing! So is little Grayson!!! Yes, I believe his life has meaning, meaning for him! You are his life. You are his sun. You are his love and enjoyment. Even when he can't express it outwardly, he can feel it… your love… you and your family… that's really all he needs. Hugs to you!

  3. I know Abby isn't nearly as delicate as Grayson, but she tells me often how grateful she is for what she does have and that despite not being able to do like others she finds great joy from what she does have.. She is horrified that with the new fertility options had I had access to them she may not even be here. No matter her pain, her fatigue, her limits she said she loves her life and is grateful for all Derek and I do to enjoy it and celebrate it each moment. She said she has never seen herself as disabled or sick.. just different and delicate- and that is just fine with her, it is her normal. Maybe no pizza and no date night, no college dorm and partying, but a awesome custom order robe and a movie night in bed snuggled with me or her sissy works just fine to fill her with joy. Hugs- it is hard to accept that what we have we cannot give to them, but according to Abby? She says what she doesn't know, she doesn't miss. He is adorable and he sparkles.

  4. Elizabeth – hopefully for Grayson, he doesn't know what he is missing. And his life does have meaning. Getting to hear your sweet voice and his sister's sweet noises are worth him living and fighting for. And maybe his purpose is to also bring attention to mito and gain more awareness than existed yesterday or 3.5 years ago. He definitely has meaning and purpose. It's just all in how you look at it.

  5. Paisley was glancing over my shoulder as I read this and she asked who that little boy was. I answered, “Grayson” and she replied that he looks nice. He has made such a profound impact on so many lives with just his few short years he's been here. And you are giving him such a peaceful, loving life.

  6. You are the best mommy for Greyson and God knew that when he placed him in your arms. You are a strong woman who show such great passion and love for her children. You continue to be an inspiration in your mothering and I am glad that you can hold on to the positive and keep your head high. My heart hurts for you and all that you have to bear each day. I am so happy that God has given you sweet Charlotte to help brighten each day as well. Both of your children are a constant reminder of God's grace and love. prayers and thoughts for you are often had.

  7. Of course you want those things for your child. It's what every mother wants. G is so loved by you (and many others). And that is what we all most need. ((hugs)) mama.

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