Two Years

I’ve been trying to reflect a little bit on this day- the anniversary of Grayson’s diagnosis. Mostly I’ve been distracted- running errands, lunch with a friend, and dealing with the every day craziness that is life with two little ones. But then this afternoon I just happened to visit a friend whose baby has a terminal illness and as I held that beautiful little girl (I really think sick kids are some of the most gorgeous children) I fought back tears. It’s just so unfair and unimaginably horrible that our precious kids are going to die of these diseases and suffer along the way.

Lately, when people ask me how Grayson is doing, I answer positively that he’s doing really well. And he is. He hasn’t been sick and in the hospital in months, his seizures are a rare occurrence, and a few recent medication tweaks have proved successful in improving his endurance, energy and connection with people. The biggest change (and probably the cause of a lot of these results) is we’ve finally after YEARS of struggle, seem to have his vomiting under control. He still throws up 1-2 times a day, but what a difference from the 5-6 times of just a few months ago.

We’ve also been trying to make a conscious effort to take Grayson with us when we can, even though it’s always a ton of work and sometimes scary. We took him to the beach late in the summer, to the ranch a few weeks ago, and last weekend on a church retreat. I feel like we pack up practically our whole house anytime we go somewhere with him, but each time, he has surprised us with how well he’s done.

On the other hand, part of me wants to scream “THIS is ‘doing really well’ ? Really?” Imagine if you threw up every day, even just once. Every single day. I would be miserable. I’m so thankful that his therapist reports he’s holding his head up for her for a minute at a time now, but also so pissed off that this is something I have to be thankful for. It’s a fine line- being grateful for improvements and loving who Grayson is, not who I wish he could be, and at the same time being righteously angry that this is his life. His life, where improvements will be subtle and probably not miraculous, and where “doing really” well could disappear in an instant.

When Grayson was diagnosed with Leigh Syndrome two years ago today, all I could think was he’s going to die. I still think about losing him quite a bit, but my thoughts are more centered on his future: his life, not his death. I think about the challenges of taking care of him as he gets older, and bigger. I think about the impact his disease will have on his sister’s life, and our family. His doctor believes that he could have years left with us, and while this is absolutely the best possible news in our situation, it’s also scary to think what those years are going to look like. I just hope for Grayson, he continues to always feel love and peace from those of us who love him so, so deeply.


  1. Down On The Farm on September 12, 2014 at 1:54 pm

    I prayed for Grayson this morning, as I do every morning. I pray for healing, in Jesus name. And I pray for you. For strength, for peace, and for you to be surrounded with Christian people who can encourage you and lift you up and carry you when you just want to throw up your hands. I cannot imagine what thoughts must go through your mind at times. You are a fantastic mother. Grayson and Charlotte are so blessed to have you in their lives.

  2. missohkay on September 12, 2014 at 3:07 pm

    It makes sense that the gratefulness and anger go hand in hand. Being grateful for the improvements in his life while facing how small those improvements are in the scheme of things sounds like a tough line to walk. I think of you guys often – hugs.

  3. J o s e y on September 12, 2014 at 10:53 pm

    Every time I read one of these posts of yours, I have no idea what to say, but I want you to know that I'm reading and they always touch me deeply. Love is such a fantastic, scary thing, isn't it?

  4. Esperanza on September 13, 2014 at 3:59 am

    I echo everyone's thoughts, especially Josey's. I understand your gratitude and your righteous indignation. What an exaughsting and confusing way to live.

    Reading these posts I am only ever sure of one thing, Grayson is so blessed to have you as his mother, to have been born in this family, that loves him so deeply. He really, really is.

  5. thenelipotmommy on September 17, 2014 at 11:35 pm

    I love you. Your strength and passion and fierce mama drive. Even with hard days, Grayson is so loved and I'm sure he knows it… every single day. God bless you for your love and dedication… even through the heartaches. I think you find the perfect balance in all of this. *hugs*

  6. Persistent on October 16, 2014 at 12:53 am

    I have been reading your blog for awhile now, but eversince I became mum 3 months ago, I feel you more. ..he is such a wonderful boy and he couldn't get a better mum and the family. It is really painful to see the children suffer, even when inside the uterus. When you think how innocent they are, they don't deserve that, unlike us the adults; but I guess, God has his own reasons why some people are put to face more challenges. I wish G to stay many more years with you and to be in the best possible condition. To you, I wish health, strength and patience and many beautiful days with your family!

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