Tuesday, July 15, 2014

When Life Differs From My Plan: and other lessons learned from a boy named Henry

As I write my little brother, Henry, is in Children's National Hospital. In the past twenty-four hours he has been suspected, tested, diagnosed and treated for infantile seizures (West Syndrome), a form of epilepsy.

Here's the thing. Henry has Down Syndrome. And since he was first diagnosed with DS I have been okay with that. I've read memoirs of people who had to learn to accept their baby with down syndrome as less than perfect but that has never been an issue for me because I've never believed he was anything less than perfect. So naturally I accepted him as whole. As fearfully and wonderfully made.

My family's goal for Henry is nothing less than a PhD in physics from Harvard University. And I truly, 110%, believed he could achieve it. I believed he would learn to drive a car. And one day marry, hold a job and live a full life. Because there was no reason he couldn't. If we gave him every opportunity I believed he could do anything he wanted. There was nothing stopping him.

Through a year of therapies and doctors appointment I've held to that. One day I would see him walk across a stage and be handed a diploma. It would be the proudest day of my life.

Today for the first time in one year of unfaltering belief I began to doubt our dreams for Henry will ever be a reality. If I will ever attend his Harvard graduation. If I will ever teach him to drive. Or see him say "I do" to the girl of his dreams.

In a paper published by the National Center for Biotechnology Information in 2006 Dr. W Shield writes: "Of the 147 surviving patients [of 214 cases], 25 (17%) had a favorable developmental outcome with an IQ of 85 or greater. Eleven others were in the dull–normal range, with an IQ of 68–84. Thus, of the 214 patients diagnosed with infantile spasms, 31% died, 45% were retarded, but 24% had a reasonably favorable outcome."

That's a pretty hard to swallow. Because this is not part of my plan for Henry. This was not my vision for Henry's life.

Please don't misunderstand me. This doesn't make me think any less of Henry, I really don't. I still believe he is fearfully and wonderfully made. A perfect creation of Jesus. And capable of the impossible.

For the first time I'm acknowledging that he may have limitations. And my dreams for Henry may never come true.

But I'm also learning to accept that.

Because most of all I want Henry to follow God's plan for his life, just as I desire to follow God's plan in my own life. I want Henry's life to be a witness of God's goodness, love and grace. Since Henry was born we have been praying for Henry's life to reach the world. And if God decides Henry can best reach the world with an IQ of 68, so be it.

Several months ago God began to unravel His plan for my life. A plan far from my own. It goes something like this: Four years undergrad work, the formidable MCAT, four years medical school, two to twelve years residency.

I'm going to be honest here: this was not my plan for my life. My plans ran something along the lines of a quick four year degree followed by a easy and enjoyable career where I could be nearby and available for my family. But you know what? God has given me a love and passion for His plan that I never expected. It's to the point where I really cannot imagine myself doing anything else. I see the many ways he has been working in my life through the years to prepare me for this. And even though I know the trials of the journey and how taxing the path will be physically, intellectually and emotionally, even though this wasn't my plan, I'm downright excited and can't wait to get started.

And one day I believe when I consider Henry's life it will fill me with the same excitement. When I see what God's plans were for him and how he used every bump in the road to bring about his master plan I will be able to smile and acknowledge that through it all Jesus really did know best. I'm still hanging onto Harvard for Henry. But if that isn't part of God's plan I'm okay with that.

Because maybe, just maybe, my plans are not God's plans. And maybe, just maybe, that's for the best.

I'm standing here and my finite vision can only see today. My infinite God sees today, yesterday and tomorrow.


  1. Truly Beautiful, Thank you for sharing this :)

  2. Hello Brianna,

    Although we have never commented before, we feel a word of encouragement would fit perfectly right now. We've been reading both your and your mother's blogs for a while now, so we know about your baby brother's diagnosis.

    From what you write about your brother, it's pretty obvious you have been very positive and hopeful about his future. We just want to tell you to not give up on all of those hopes and dreams.

    The God who opened the Red Sea, is the God who defeated Sennacherib and his army. The God who sent an angel to release Peter from prison, is the God who sent an earthquake to release Paul and Silas. The God who fed the Israelites manna and quail in the wilderness, is the God who fed thousands with five loaves and two fish. The God who healed the blind, the lame, the deaf, the paralytic, and raised the dead, is the same God who we serve today. Remember, Hebrews 13:8 says, "Jesus Christ is the same yesterday, today, and forever." And as Jesus said in Mark 9:23, “If you can believe, all things are possible to him who believes.”

    Please, do not stop believing in those hopes and dreams you have for Addison. Do not forget that God is a God that defies statistics! We will keep your brother in our prayers.

    Sincerely in Christ Jesus,
    ~Rebekah and Esther