This weekend, Grayson projectile vomited while we were out shopping, soaking his clothes with vomit and mucous. His tube extension came out multiple times, soaking his clothes with formula. I was called to the nursery at church this morning because they were worried about his stiffness. He isn’t sleeping through the night anymore, and often cries out in a state of half-consciousness, his body rigid and obviously in pain. He can’t be left “loose” on the floor for more than a minute because he loses his balance and hits his head. His disease is progressing: the disease with no treatment and no cure.

I try to be real and honest on this blog with my words, but I realize I’m sometimes my pictures skew reality. I’m no photographer (and 99% of pictures I take are on my phone), but I pick out pictures of Grayson to post where he looks adorable- smiling and happy. And a lot of the time he is- I can sing “Wheels on the Bus” or start a Veggie Tales song and he busts out with this killer smile, genuine joy on his face.

But the real story behind the pictures is there is often a lot of tears, gagging, throwing up, whining, and pain in his day. A lot of my time is spent keeping Grayson calm and safe, while at the same time happy and engaged. Some days I am more successful than others, and am so grateful for the support system I have that helps me accomplish these goals.

People often say that caring for kids gets so much easier as they get older, and I’m sure that’s true for typical children. But taking care of Grayson gets harder and harder as he gets older and more symptoms appear. He’s 26 pounds now- what’s life going to be like when he’s 40 pounds? 80?

His Mito doctor is putting him on a new medication for his seizures and is referring us to another specialist about his stiffness; it looks like we may be on the road to trying Botox again. It’s frustrating to have no guarantees- no assurance that this medication will control his seizures or the Botox will help his body relax (it didn’t before).

In this day of blogging and social media where everyone has digital photography and can post whatever they want to portray their lives however they want, I have to remember that everyone has struggles behind the smiling faces of their adorable kids and fabulous vacations that appear on the computer screen.

This week is Spring Break for both Ryan and Grayson- hopefully we can capture some moments of joy on camera and make some happy memories as a family while keeping the moments no one wants to remember to a minimum!


  1. Erin on March 11, 2013 at 3:33 am

    My heart is sad that you had a tough weekend. I hope that you have a lovely and fun Spring Break with your family of 4 all together for an extended period of time. And you are right, the social media of things just shows what we want to show, we know that everyone has private struggles. You are honest and open here and it is powerful to read. xoxo-

  2. Coco on March 11, 2013 at 4:08 pm

    I'm sorry your weekend was so hard.And so sorry that the disease is progressing noticeably. I agree that everyone tries to look perfect online, and in real life. I wish they'd all stop because it makes me feel like I'm doing something wrong! LOL. We always seem to compare our worst with someone else's best… no wonder I feel so inadequate. I hope that the vacation is wonderful and free of any reality. YOu need a break! And hoping that the doctors will know how to help Grayson, find something that will help him. It's all so heart breaking, but I thank you for being open and honest. Honest struggles are far more powerful than false perfection.

  3. J o s e y on March 11, 2013 at 4:53 pm

    Ugh, your reality is so hard hon, it's okay if you want to gloss over that sometimes, even to yourself. You are such a strong, wonderful, caring mother — but I am still grateful that you have a support system to help you out. Hang in there lady!

  4. Becky on March 11, 2013 at 6:35 pm

    I think in many ways that documenting the hard is just as important as documenting the joy. Wishing you a joyful week this week and hoping for something to ease G's pain (and yours!) and the disease's progression.

  5. 3 Bed, 2 Bath, 1 Baby on March 11, 2013 at 7:22 pm

    Hi Elizabeth,I'm a lurker… I don't comment much… but I wanted to say that you are one of the strongest bloggers I "know." I can't imagine this journey you are on, so I can't say I know how you feel. All I can write is, I'm listening… I'm reading. I hope blogging is helping you along the way.

  6. basebell6 on March 11, 2013 at 7:51 pm

    agree about you being so strong. write it out, complain all you want, life is NOT fair and we are hear to send you all the hugs in the world!

  7. Mrs. D'Amico on March 11, 2013 at 8:46 pm

    You are exactly right… social media shows everyone's life as they WANT others to see it, not as it really is. Reality is, life is hard and some struggles are really difficult struggles. I'm sorry you are going through this. I can't imagine and I can't say I understand. Social media (facebook and twitter specifically) are evil most of the time.

  8. Stefanie Blakely on March 11, 2013 at 8:55 pm

    I love this post so much, E. You're exactly right– social media is a place where most people post their "highlight reel" not their real life. I'm incredibly guilty of this– scroll through my blog and you'll see lots of happy faces and crafty stuff. What you don't see is that Jack is in a most frustrating phase where I feel like he's cranky 85% of the time, Liam's constantly testing me and my days are filled with paperwork from lawyers regarding my divorce. BUT.I promise you that people want to read about the difficult parts of your life, just as much as the simple and beautiful ones. I think that social media has created a contest among mothers of who can present their family in the most perfect way…. but the reality is that we're all struggling in some way, whether it's a special needs child, PPD, IF, divorce…whether we show that to others or not.I love you, and want to read about ALL of the parts of your life!! <3

  9. allthesunforyou on March 11, 2013 at 9:28 pm

    It's so important that we remember that there is so much more going on behind the photos and la-la-land online! I know that B and I have our FAIR SHARE of problems, but I can't write about them because he reads my blog and would die. I elude to them, but I can't come out and put my entire reality online, and I remind myself of that when I find myself envying others' online lives ;)You are such a wonderful mother to both of your kids, and we all know that you're wonderful behind the screen as well as on it. Your kids know this too!

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  11. Amber on March 13, 2013 at 3:59 am

    I wish I knew what kind of wonderful words would make this easier, but I just don't. Your mommy job is far harder than what I deal with on a day-to-day basis and I think my life is tough. Seeing him struggle must be heartwrenching and I hope they get him on a better regimen soon.

  12. Anonymous on April 18, 2013 at 5:44 am

    When I was teaching I had a student who was wheelchair bound, ate only baby food (now on a feeding tube), had little motor control and could not speak. Some days she could move a few of her fingers and others she could not. I can't exactly explain how or why, but she had a way of getting to me, a way of reaching my heart like no-one else. A few years ago I read the book by Christopher de Vinck a tribute to his brother, The Power of the Powerless: A Brother's Legacy of Love. I came to understand her significance a little better.Though I am not a parent in your situation, I have some understanding of the love you have for Grayson. Your journey Elizabeth is a difficult one, but the deepness of your love and care for your son makes a difference. Through the times of laughter, despair and tears you are touching lives. Have no doubt that this journey and Grayson's life is a powerful one. Thank you for sharing it with us. I pray that God holds you gently in His arms and carries you when the burden is to painful to bear.

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