Six months later

Six months ago today I cradled you in my arms, Olivia, as your little body alternated between stiffness during a seizure, and a limp lifelessness between seizures. I watched as your little lips turned blue from lack of oxygen, and have never been more thankful for an oxygen mask. I cringed as I saw the amounts of medicine being put into your system, but thanked God that they were available when we needed them.

For the next seven days I sat next to you in the hospital as you alternated between lifeless sleeping and fierce screaming and fighting.

And my life will never be the same.

Your life will never be the same.

The past six months have been very difficult for you, Olivia. You’ve cried, screamed, panicked, and buried your head in my shoulder more than I thought possible of one little child. They’ve been hard on your mommy, too. I’ve cried more tears for you than I can remember crying about anything.

The truth is, Olivia, I don’t know how to parent you. I really don’t. But I have a few promises to make.

I will love you. Always.

I will cradle you in my arms yet again, even when I don’t understand or even know what has triggered the screaming. I will lay next to you as you fall asleep, or during one of your countless wake-ups on any given night.

I will be there for you even if others have thrown up their hands in frustration. I will love you even when you yourself are completely frustrated.

Even when I am weary, and, Olivia, I have been so weary lately, I will keep holding you tight whether it is 2 in the afternoon or 2 in the morning. Whether I know exactly what the problem is or what is making you anxious, or whether I have no clue (which is more than likely the case).

This is my promise to you. When you need to come running to Mommy for reassurance, my arms will be open.

I will learn and I will adjust.

Six months ago I had hardly heard of encephalitis. I barely knew more than a few basic facts about children who struggled with sensory processing and anxiety. Now I have read dozens of articles. I have books on my to-read list that would never have made their way there before.

I have researched and have adjusted how I parent you. And I will keep learning. I promise.

We’ll figure this out. We’ll make lots of mistakes, we already have, but your daddy and I are committed to finding ways to help you grow and overcome these challenges.

We’ll keep learning, and we’ll keep trying things. We’ll learn knew ways to parent and guide you and we’ll leave no leaf uncovered as we research ways to make things better. That’s our promise.

You have come so far in six months. In some ways you are back to your old self. And in other ways, everything is so very different that it is hard to remember what it was like before. A lot has changed. And it has affected the entire family.

I don’t know how your story will continue to unfold. I am praying that it will bring full and complete recovery, but only time will tell.

But what I do know is that God is writing your story, and it will be beautiful. It won’t be easy, but He will graciously walk you through whatever your story brings.

Our family story is intricately webbed with your individual story. And God is carrying us through it. He is teaching me, humbling me, and loving me as I try to lovingly parent you through these challenges.

It’s been a long six months, but we’re so grateful for where we are. Your vibrant personality has come back, even if it is usually only us that gets to see it. You love life, and together we’ll figure out a way to keep getting better.


  1. Precious, Johanna! I know you are the best mother Olivia could have, that God will continue to help and guide you–and also give you a unique ministry because of all you have experienced. Love you!

  2. Oh, my sweet, sweet daughter. Life is full of surprises , but I don’t know anyone who is up to the challenge like you and Brian. Can’t wait until NEXT week when you will be closer.

  3. This made me cry. I still think of you often and all that you’ve had to endure the past six months, always praying when I do! As a special needs mom I can relate to so much of your feelings and I’m always encouraged by your faith in the midst of your trials. I really wish I would have had the chance to meet you over a cup of coffee “in real life” before your big move but perhaps the Lord will allow it someday in the future. Until then, sending a virtual hug your way along with my continued prayers for you, your family and sweet Olivia’s full, complete recovery! ((hugs))

  4. I am so glad you have her and she has you.

  5. Amen. So thankful our loving and sovereign God chose you and Brian and Stefan and Silas for Olivia and her for you. Praying for you right now!

  6. Johanna, I just found your blog through Sarah Mae’s and a comment you left. I am so glad I did. You’re such a sister/kindred spirit in Christ. Firstly though, I am so sorry about what has happened with your daughter Olivia. But I love your words on your post “What Makes a Good Night?” about God’s sovereignty. He is there, in the big and the small. I wish I had found that post about three months ago when my son was sleeping badly and I was not coping. I know you don’t feel amazing, but you are and your words were very encouraging. I hope it’s okay, but I added that post to a page of mine for posts I need to read again and again. Secondly, keep going. These hard seasons just come in from nowhere and leave us broken and struggling, surviving each day. A new norm will grow and you’ll starting living again and not surviving. I love your blog, your thoughts, your theology and I can’t wait to read more and more. Blessings sister! Praying for a good night sleep for you x

    • Sarah, thanks so much for stopping by! Looking forward to getting to know you through the blog world. 😉 So nice to find a kindred spirit.

      P.S. I had one of the best night’s sleep last night than I’ve had in a very long while. :-)

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