Struggles with God - My Answer!

When describing myself, I usually say "I'm not an overly religious person." I was reading my friend Kirsten's blog entry today entitled "Struggles with God" where she asks "Why can't he answer prayers the way we want?" after learning about the death of a child. As you can imagine, this subject hits home with me because it is a question I ask myself daily in regards to my daughter Jenelle. Mostly though, I usually just wonder ... "Why?", as in "Why would God to this to a child?"


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It takes a lot of courage I think to be angry with God, or more specifically at the way he lets things happen in life. I remind myself daily that I too could easily withdraw into a self pitying type of depression because of my daughter, and think that she has come into my life as some sort of punishment, or because I lacked something religious, or because I teased a retarded child when I was young. To me, this is an easy way out ... to push the blame on God. And yes, there are times that I've been angry with him for what he puts her through. Life isn't fair sometimes, and no one is immune, not even children.

My favorite quote about this comes from the movie "Rudy", when the Rudy character is talking to the Cardinal and Dean of the School at Notre Dame asking if he's prayed hard enough about getting admitted. The priest answers, "In all my years of religious studies, there I two constant things I know. There is a God, and I'm not Him!" ... then he says, "Praying is something we do in our time. God answers in his time." Which also means God answers in his own way too.

I finally found peace with God regarding Jenelle a few years ago now. Like I said, it is easy to put the blame on God for who she is, but instead I choose to focus on her purpose in life rather than her struggles. Instead of anger towards God, I see that sharing her life and story with the world has brought inspiration to others and has changed me as well. I see the beauty in her small accomplishments like someone who sees the beauty in seeing the Northern Lights for the first time. It is God's work, in the most profound way. And when you think of it like that, it is easier to accept his answer to your prayers, which isn't really what you were praying for or the answer you were expecting.

Lately with all of her new accomplishments, I get a lot of email responses like "Your prayers are finally answered!" Well yes, but not exactly. You see, when I pray to God about Jenelle, I never ask him to stop her seizures or to make her "normal", etc. I usually just ask God to continue to give me strength to be her Mother. Because honestly, Jenelle gets plenty of prayers about her medical condition... but in reality, having the strength to accept her is what keeps me going. And yes, God does answer that prayer daily - if he didn't, I'd probably be a mess! However, I am enjoying her new accomplishments as an added bonus!

So while it is difficult to understand why God answers prayers in a certain way, remember that sometimes the answer has a deeper meaning, or that the prayer has been answered another way. Thank you Kirsten for making me think about that, especially this week.

A Different Kind of Normal

I just read a story in a new parenting magazine called Wondertime. The story in question is "A Different Kind of Normal", by Charlotte Meryman, a writer who appears to focus largely on parenting and special needs topics. Her series for Wondertime follows a Massachusetts family and their 4 year-old son, Jimmy Foard, who has a rare genetic disorder called Alfi's symdrome and also autism spectrum disorder.

The magazine may be hard for you to find, and there's not yet an online edition you can read, but the story is worth taking the trouble to find and read, not only if you're a special needs parent, but also for anyone who wants to understand what we go through.

The opening paragraphs in particular articulate perfectly one of the more heartbreaking aspects of socializing a broken child:
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The moment she reads "Dress as a Superhero" on the invitation, Michelle Foard is sure her 4-year-old son, Jimmy, is headed for yet another birthday party disaster. "They'll have," Michelle guesses, "all the things he doesn't like." Like the dreaded bounce house. With his low muscle tone and poor balance, Jimmy hates being jostled on such a billowy surface. Or an arts and crafts table. It's too frustrating; Jimmy's fingers never seem to do what he wants them to do. The way things usually unfold, when no activities click for him, is that Jimmy retreats into himself. This pains Michelle and her husband, Jim, for it defeats the purpose of braving the party in the first place: connecting with other kids.

Yet this doesn't stop Michelle from RSVPing a firm yes. They will go, but with one concession: She'll intentionally arrive late in hopes of minimizing his time there. When the day comes, she keeps Jimmy quiet at home all morning to conserve both their energies and fights off a sense of quiet doom. At 3:00, she slips a Superman T-shirt over her son's head, waves good-bye to Jim and their almost 2-year-old, Maddie, and lifts him into his car seat. And they set off.

Michelle is determined that Jimmy go to as many parties as he can now. "Because I figure at some point," she says, "the invitations will stop."

That knowledge, it must be said, is one of the most piercing parts of parenting a child with special needs. Differences may not matter much to preschoolers, but as kids grow up and friendships cement, the child who can't easily play with others becomes the child who gets left out. Jimmy has been asked to a few playdates, but already Michelle has noted that unless the mom is a friend of hers, "there's no repeat."

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