What I’m Reading …

I’ve gotten into a few books again. Sometimes life gets in the way of hobbies that require sitting still and holding one’s attention for long periods of time. Children can be that way. These past weeks we’ve had a little normality in our house again. Here’s what I’m reading …

Wonder by R.J. Palacio: Everyone and their brother and their brother’s kids loved this book. And so did I. For a book aimed at young adults it is longer than I expected. While it is broken up into easy chapters, it is a lengthy read. Palacio admits in her bio the book is based on a passing encounter with a young person who has a physical disability. I was loving every part of the book up until this mere acquaintance and not a real-life knowledge of someone who has developmental disabilities became obvious in her choice of words. Her use of the R-word tainted the remainder of the book for me. However, the book was a good representation of how special needs parents fight to have their children belong and there will always be others who just do not understand this. But in the end our hope is a community of people stand up and do the right thing for the good of everyone.

A Man Called Ove by Fredrik Backman: This book has been sitting on my shelf for a long time. I bought it back when everyone was raving about it’s worth. I could not get into a book about a grumpy old man. I would start it, read a page, put it back. Start again, read one more page, put it back again. Finally, I pushed through those beginning pages and it had me hooked. It’s slow start became a real life story that pulled me into a life that I could honestly understand. And by the end it had me in tears. This man called Ove was the thing, the grumpy old man, who held his community together. Just like it’s cover says, first impressions are unreliable sometimes.

Mental Health and the Church by Stephen Grcevich, MD: Dr. G is so stinkin’ smart this book is taking me more time to work my way through it. I want to give it all of my attention. He has packed many years of his experience and knowledge into a handbook for us and our churches. I’ll let you know when I finish and give you my thoughts. So far, it has not disappointed.

Last year so many of my books revolved around illness and the reliance on God during these difficult times. This year, it seems by books are leaning towards community. Funny, since we are so isolated these days. Must be something I long for underneath it all? My introvert self would be in its happy place spending days alone with books on books. But, I think God is calling us to show others in our community His glory in bigger ways than my nose in a book.

Up next on my reading list, besides the rest of Dr. G’s Mental Health book, is: The Way of Abundance by Ann Voskamp. I’ve already started it and LOVE it. And I saw an interview with Brad Meltzer that prompted me to buy his book, The Escape Artist. It sounded like interesting history within a suspense novel. Love those!

Are you reading anything good?

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You Do You, Special Needs Parents!

I have been chided for sharing too much information about my son and his needs. There are people who say, “This is his story to share. That is, should he choose to do so.” Little do they know, our stories are tied pretty tightly.

Then there is the flip side. There are those that want to know the whole scoop. Anything and everything. They think I’m not sharing enough. I keep too many things to myself. I am too private. They just need to know to need to know. You now the ones. I used to get so worried still kinda do about am I giving away too much or am I sharing too little?

But these days I’ve decided it isn’t really about pleasing everyone else and their need to know. It’s about what is right for our family. How about you? Where do you fall in this? Sharing is caring? Or do you keep it close to the vest? I’ve decided whatever is right for you is probably right.  We need each other in this special needs world; building one another up in Christ. You do you, Special Needs Parents!You Do You

The truth of the matter is, there aren’t many of us out there in our communities to whom we can reach out. We are an island. Or a beacon. Or an island with a beacon! At times it can feel like we are by ourselves out here with a spotlight shining on our differences. Our differences are quite noticeable whether we like it or not. If we leave the house we get noticed. If we go to church, Target, a restaurant; we get noticed. (Notice: these are the only places we go.) Once in a while we find a family across the room that is similar to us. Or a face in the crowd that ‘gets it.’ When this happens? “Laaaah!” It’s like angels singing. Our family all says, “Loooook!” It’s even difficult for us to not stare at a special needs family. I bet it’s even more difficult for us than for others. We are so drawn to families that have special needs because we aren’t seen out in public often. We can’t stop looking at this rare sighting! We want to feel the solidarity, the togetherness another special needs family can offer. (By the way, we totally get why y’all aren’t out in public much!)

When my son was younger it seemed the information and support was easier to find. But as he has grown into more of a man these have dwindled. When we found ourselves in a real pickle with his behavior, the help had all but dried up. We found ourselves holed up in the house for most of the time without any direction.

I decided then that I would share our story. Because I couldn’t find any one else’s stories or solutions, I would share mine. About that time I came across a book; someone sharing his family’s disability story. “Laaaah!” Someone who “gets it.” Here was someone who finally said what we felt. Disability wasn’t easy. But God wasn’t going to leave us alone in it either. I am so thankful he shared his story. Sharing was caring! That story led me to a whole network of families who are each living out special needs in different ways, yet helping each other in their walk. God is using these stories to help us through difficult times. You do you, Special Needs Parents!

I don’t know your story or how God is leading you. In my case, I hope I can help just one person by sharing a piece of our story like others have helped me. I’m trying to find a balance. Somewhere between shutting ourselves off/not helping anyone with what we have experienced and being too loose-lipped with our life is where I want to be. Being a special needs parent can be a tough road at times. We need each other as a source for support and guidance. I love hearing how Christ is leading other families touched by disability. I want you in my club, my tribe, my squad, my <insert trendy group name here>! I want to hear how God is leading your family. Whatever that may be, you do you, Special Needs Parents.

1 Thessalonians 5:11 “So speak encouraging words to one another. Build up hope so you’ll all be together in this, no one left out, no one left behind.”

Lessons Learned from the Children’s Hospital …

For us, an emergency trip to the hospital is a strange mix of terror and relief. When walking through those hospital doors we’re running on close to empty, physically and emotionally. Fortunately, these are the times we feel the Holy Spirit coming the closest to us. We know God is in control even when we are spinning out of it. I bet these are experiences that many face, not just those with special needs.

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Property: Stephanie McKeever
We see people on our church prayer list that are in the hospital for many reasons. I am the worst offender when I see the church prayer list – sure, I pray. I keep the prayer list in my email so I see it and remember to pray … at least twice. That should cover it, right? Evan’s been in the hospital quite a few times. But this trip was … hard. It taught me that maybe I should be making a little more of an effort than just privately praying once or twice when I see the prayer list. Here’s a few of my lessons learned:

  • Hospital stays are expensive: And I don’t mean the actual medical costs, because, yeah, expensive doesn’t even begin to cover that. What I’m talking about is all the other stuff. Just the gas can be half a paycheck. Gas pumps don’t take insurance cards. Let’s not even talk about hotel costs if this applies to you. Yikes, it adds up fast. Then there’s the expense of meals. Sometimes meal time was the only time I got out of the room. Who knew eating in a cafeteria would be a special treat? An expensive special treat.
  • Hospitals are lonely: We talked to those nurses until I remember one telling us she had to leave to see other patients. Whoops. When all that time is spent cooped up alone in one room, we started to go a little crazy. (Well, more crazy than my normal kind of crazy.) I know how difficult it can be to visit people in a hospital. But we were soooo bored. There are only so many times we could watch Finding Nemo. We needed some distraction. I’m pretty sure Jesus told us to care for the sick because they are bored out of their minds.
  • Just because you are discharged from the hospital doesn’t mean the problem is gone: This is especially true with a medically fragile person. Discharge just means ‘comfortable handling the situation at home.’ So many people equate discharge with cured. Not always the case.

So what am I going to do about this? Don’t worry, the next time you are in the hospital I won’t be showing up with my entourage of busy people. I can see it now: “Mom! What’s this machine do?” *unplugs machine* BEEEEEP!!!! Nope, we won’t be visiting any sick people in hospitals. But I do have texting, Facebook messaging and email. We walked into our hospital room and received a text from a friend that lives many miles from us. I can’t tell you how much that text meant at just the right time. 

Sometimes I wonder why God allows the experiences like this; unexplained illness, disability, or children having to be in children’s hospitals just to name a few.  Probably not so we can sit and wallow in our own self-pity.  (But I totally get this.  Believe me.  Been there, done that and I’ll probably go back there and do it again.)  I’m guessing one of the bazillion reasons he allows things to happen … so we can learn to comfort those that need comforting.

2 Corinthians 1:4  “He comforts us in all our troubles.  Now we can comfort others when they are in trouble.  We ourselves have received comfort from God.”

It’s easy for me to get locked into our own special needs world. It’s difficult to just pop into a store to pick up a get well card, a gas or food gift card. It means dragging everyone and all of our issues along for the ride. But now I know how much the little word of encouragement meant. So that’s where I’m going to start. There’s so much more that I could do. The obvious stuff is right there. Baby steps, people. I’m sure it’s going to overwhelm people when I start sending out messages. There will be talk. The ‘What’s wrong with Stephanie,’ kind of thing. Maybe we should do this together? What do you think? Join me in taking over the hospitals with words of much-needed encouragement. Because one of the biggest lessons learned from the Children’s Hospital was we are a hurting people in need of each other.

Matthew 25:36 “…I was sick. And you took care of me.”

Community … (Not the TV show, but kindof that too, I guess?)

Community.  I’m starting to see God’s purpose in it.  And I wasn’t thinking of the TV show Community when I started this, but yeah, they are dead on when it comes to what I’m talking about here too.  It’s a quirky take on a group of friends doing life together.   Sometimes life gets messy.  But the mess is always worth the community.

I’ve been seeking and learning from some other special needs moms.  I’ve said before, this doesn’t always come naturally to me.  So I’m not talking about tons of women knowing all my stuff.  I mean it’s one, maybe two other people.  Because we all know how women can behave.  (Women.  And their behavior.  Just look at reality TV shows.  You don’t see any “Men Behaving Badly”, “Dance Dads”, or “Real Husbands of Atlanta/Nashville/Whoville.  Holy cow, I think I found my next blog post …) Back to reaching out ~ It’s not that I really had to reach out, our lives are kindof on display of late so I don’t need to say much.  But one conversation leads to another and before you know it we realize we are all dealing with a little of the same thing with our special needs kids.  Different but the same.  Who knew?!  Funny how that happens in community.  Sometimes we are able to help give each other answers.  Sometimes every one’s answer is a little bit different for their family.  And that’s okay.  But what it ends with is this.  I’ll pray for you and you pray for me.  Community.

We’ve been searching for our son’s place in church.  With his special needs and being a teenager we are finding it’s becoming more and more isolating for him and us.  We’ve never been the game night, group potluck, kind of family that was over-involved anyway.  But we miss the little we did.  We want it for our sons.  Disability is difficult on our own.  But so is cancer, losing a job, divorce, aging parents, wayward children, pornography, alcoholism … the list is never-ending.  I think God made us to come together in our time of need, our time of celebration, whatever the season of life.  We need Community.

As Christians we can have a tendency to retreat from the things of this world.  We can get caught up in our own little world and want nothing to do with those things that might stretch us, scare us or even hurt us a little.  But I don’t think that’s how Jesus saw us living this life.  That’s not how he lived life.  He lived life speaking with the messy people.  Sinners just like me.  John 1:14 says, “He made his dwelling among us…”  I wonder if he would have been out amongst the trick or treaters?  desiringGod put out a blog that addresses just that regarding Halloween.  I love this.  So many times our churches say Halloween is EVIIIIL.  And yes, it can be just that.  And creepy.  And something I shelter my children’s eyes from.  (Believe me, The Exorcist & Amityville Horror movies still haunt me both day and night!)  But the fun, dressing up like a cute little puppy, going door-to-door, candy-collecting in the neighborhood kind of Halloween?  Man, that’s the stuff of memories!  Some of my favorite childhood memories are of Halloween fun with my brother and sister.  There was nothing more exciting than dumping our candy haul on the kitchen table after walking all over the neighborhood with each other and our friends.  I want my kids to experience the excitement of getting the “good” candy.  I want them to feel the disappointment of receiving the “healthy snack”.  They should know the consequence of the terrible costume choice they made is wearing the mask that is smothering for at least a little while.  I want them to cherish every one of those memories someday.  

And I really want them to know what it means to be involved in a Community.

Bible Verse I’m Loving Today:
John 1:14

  
On second thought, if you are dressing your children like my brother & I are dressed here then maybe you should be staying in the house after all.  

I don’t even know what I am supposed to be.  A witch? A clown? A witchy clown?  And my brother, well, he is just darn cute in this picture.  But the thing is, he wasn’t really into “cute”.  He was more the “shoot your sister with a BB gun cowboy” type.  

Both of us remember this Halloween.  We both have big smiles on our crazy faces.  So we must have had enjoyed ourselves and had a pretty good candy haul that night.