Thursday, May 26, 2011

The Quest for Encouragement: The Church's Part

A friend on Facebook, recently, posted a link to an article, titled "How to Find a Good Church". It is less about how to find a church and more about what a good church looks like. It is a fantastic article, and I chose to share it with my friend's list.

There was one line in the article that drew particular interest to me and has sparked a bit of conversation. Conversation is always good, especially when it involves children with special needs and their families.

Half-way into the article, the author states, "The tragedy of modern Christianity is that when members of the body hurt, too often we relegate them to finding resources outside the walls of the church. " The article is not necessarily referring to families who have special needs children but to hurts in general. But, the statement still holds true. Within my own county in Texas, I can name only one church that has teachers who are trained to work with children who are deaf, autistic, or who have various delays. There are a few churches who provide interpreters for the deaf but that's a whole other blog post.

The question of starting a ministry in this area arose in our conversation, but I think it is more about attitude and education than ministry. I'm not sure what type of ministry would be specifically set-up outside of the typical support groups. It is more about an overall attitude of both the membership and the church's leadership of acceptance, encouragement, and education. It may not be cancer but 7q11.23 duplication can be very trying, frustrating, and even heart breaking.

I know the same is true for families who have down syndrome, autism, and other genetic disorders. One person told me recently, "Raising a child with special needs is a lonely job." It shouldn't be. The church should be surrounding them with encouragement and prayer. Members of the church should be the one of the first to educate themselves on the disorder, not to mention be there with constant encouragement.

This is not to say I, personally, don't have educated and encouraging friends. I do. But sadly, I can count on one hand those who have personal knowledge of my trials and are willing to be a shoulder to cry on and a voice of encouragement when I need it most.

But, so you don't feel like I am singling out the church, the same is true even within family. It is hard for family members to accept that a child does not meet the same norms as their other nieces, nephews, cousins, or grandchildren. It is easier to just ignore the issues. It is also hard for some within family to listen because they feel it is more about attention-getting than anything else. Acceptance within family is difficult on so many levels, and I am not the one to even begin unraveling the psychology behind that. There are others much more qualified.

The purpose of this post is to merely say that families with special needs children need more encouragement than the typical family. You don't have to provide answers. You don't even need to fully comprehend the issues at hand. You don't need a special degree or a ministry leader. All you need is a merciful and caring heart and a listening ear. Sometimes all we need is someone to hear our story or let us talk through our emotions without those emotions being dismissed. Our children may not be dying but it is an emotional journey all the same.

*Note: If you want a better glimpse into the emotions of a parent with special needs, I invite you to read Amsterdam International. Written by Dana Nieder, the mother of a child with an undiagnosed genetic disorder, she explains what it is like to land where you least expect it and just how frustrating and lonely it can become.

You can also read my article, The Quest for Encouragement: Are You in the Airport or Not?

Wednesday, May 25, 2011

Book Review: Story Engineering

I loved this book! If you are a fiction writer of any type, then this book is for you. Larry Brooks an author himself writes about more than just the basics of a good character or conflict. He delves into the deeper aspects of what it takes to create a good character and a good conflict. He tells you what the reader expects, the editor expects, and what you should expect from your writing. He uses examples from well-known books, TV shows, and movies. He doesn't stick with just one genre of movie or book to prove his point.He pulls from all genres to show just how important the information is.

Divided into eight parts, the author details what he calls "Six Core Competencies" as well as an opening chapter explaining why this book is different than all the others you have previously read on writing(And yes, it is!), and the final chapter which talks about the development process and pulls everything all together.

As I read this book, I began to see the holes in my own writing. I haven't been able to figure out why I wasn't happy with my characters and my stories but now it is plain as day as though a doctor sat down and diagnosed my problems.

I give this book 5 stars. It will be one that I read more than once.

Wednesday, May 18, 2011

We've Come A Long Way, Baby!

We have past yet another milestone. This one won't be on your growth charts. And, really, it shouldn't be called a milestone but a mile marker.

We have just finished surgery #4 on our little Snugglebug. This particular surgery wasn't anything serious. It was just tubes in the ears and adenoids out. I say "just" but no surgery is "just" a surgery. Every surgery is a big deal as it requires IV's and anesthesia and knives and exposure to dozens of different types of 'cocuses. Surgery is a scary thing for anyone of any age. For a mommy to send her little one away with a bunch of strangers to be cut on and exposed to 'cocuses this is no easy thing. Stress abounds!

But, this surgery was a milestone in that after four surgeries you know pretty well what to expect, how to handle it, and how to deal with the stress. The stress is still there but you learn how to handle it.

Snugglebug's first surgery was at seven months of age. He had to have surgery on a lazy eye. His lid was literally sown open so he could see. The procedure is way more complicated than that. It's called Ptosis. You can google it if you are really interested, but I won't bore you with the details. I was a nervous wreck the day of the surgery. I had no idea what to bring to the hospital and even though I was told it would take less than half an hour, I packed to stay at the hospital for days.

The worst part of that first surgery was afterwards. Not knowing what was happening or why he was feeling so out-of-it, Snugglebug cried inconsolably for well over an hour. We were at a loss as to how to help him.

Surgery #4 was different than the first in so many ways. We've come a long way in three years! I was calm as could be. I prepared Snugglebug the night before by telling him he had an early morning doctor's appointment and that we would leave before he could eat breakfast. I left out the part about the hospital. Once we were at the hospital, he knew exactly what he was there for and wasn't happy about it at all. I wasn't worried at all about this. Even at three, he has a right to express his opinion on the subject.

After the surgery, my little man seemed to know exactly what he was feeling and why. The anesthetic was wearing off and he was waking up. He cried and fussed but not much. He was woozy but seemed to be focusing internally to gather his wits about him. Knowing my child as I do, I just stayed close to his bed. (My child doesn't like to be held when he is sick. That's a whole other post.) As he became more aware of his surroundings, he finally decided he wanted his Daddy. Once he was in his daddy's arms, he relaxed and drifted in and out of sleep.

There was no inconsolable crying. Snugglebug has traveled this road as well. Despite his young age, he has learned so much about surgeries and how to handle them. It is at times like this that I wish I could crawl into his brain and hear his thoughts. I would like to know what he has learned.

I could go on and on about what I have learned about surgeries, hospitals, the bills that go along with both, and so on. Surgery #4 is a milestone because we have learned that for us this is part of life. We have learned how to handle the stress, the frustration, and the bills. And that's not just my husband and I, that goes for Snugglebug as well. He has learned so much!

By evening, my child was back to normal. You would never know he had had surgery eight hours earlier. He was running and playing like always.

I am so full of emotion that I can't even begin to put it into words. We have past such an incredible mile marker. It is not one that I would hope everyone would achieve, but for us it registers a long list of invaluable lessons that we have collected over the course of four surgeries. Words don't convey how proud I am of Snugglebug who has learned all this on his own. Words don't convey how proud I am of my husband and myself for learning how to lean on one another and work as a team in times like this. Words do not convey the lessons we have learned and will rely on even when we are not walking into a surgery.

It is odd that at the end of the day, as I reflect, I consider this to be normal for us. It is not a big deal, and it is just another surgery. The milestone we have crossed is called acceptance. Acceptance is a huge milestone for special needs parents.

We've come a long way, and it has only been three years! What could possibly be waiting for us over the next fifteen!