Embracing Disability

I’ve got a big pet peeve.  Many of them really, but the one I’m bugged by right now focuses on a Bible study guide I’m doing.  The author has used at least three times “disabling us” or “disabled me”.  She’s talking about circumstances or things that make us disabled but, in my opinion, she’s using it all wrong.  It’s the context and the tone. She is talking about what to do to avoid this. To avoid disability. To work around it and fix it.  Not to embrace it.

But didn’t Jesus Himself choose to be disabled by coming to earth as a baby?  After all, He was in heaven with His Father and came here for us.  He became human and took on all the frailties of humanity. To live a perfect life and save us. Yes, he was somehow 100% person and 100% God.  I won’t even try to explain that tough one. 

When He was here on earth He took special time to have compassion on those who had disabilities.  He didn’t shun them or blow them off like the Jewish culture did.

Yes, this is personal.  My nine-year old son, Luke, has autism and is non-verbal.  Am I supposed to not love him just how he is—because he has a disability?   God made Him and each of His children are made in His image. My nephew Teddy, who has autism–wonderful and hilarious. My feisty friends, Brandon and Timothy Clark who have Angelman Syndrome—made in God’s image and lovely.  Luke and Noah Shafer who have autism–made by God’s hand.  Joey Marino, who has cerebral palsy—gorgeous.  Beautiful.  So many others I know. 

God’s word says through our weaknesses, yes our disabilities (and we’ve all got ‘em) that HIS STRENGTH shines through.  He uses them for His glory.  But oh how counter cultural that is.  WE MUST HIDE our weaknesses and show how much we have it all together. Even in the church. But that’s not what Christ wants.  He wants us to come to Him openly and not hide our sin.  We are supposed to also confess our sins to one another.  God’s glory is shown in this way.  Not by avoiding brokenness or denying it but by embracing it.

Lord, change our hearts.  Help us to be real and authentic. Help us to embrace those with special needs and love them just how they are. 

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Back to School Week….Too quiet?!!?

I must be losing what’s left of my mind.
Luke, my 9-year old special needs kiddo, who rarely sits down, started school this week and I was waiting very impatiently for that to happen. I desperately needed some chill-out-in-the-quiet-time. Some time to take a deep breath, pray and ask the Lord to refresh me. And all this was needed with Luke being home all day just 10 days before fall school started. He had summer camp prior to that.
Here is where the losing my mind part comes in. After Luke’s bus came the first day back (my older son, Brandon, started 8th grade last week) I straightened up the house and then spent some time praying. I got in to see my chiropractor after 2 months and the massage therapist in the office, Danielle, gave me a half hour massage. Heaven! After a Trader Joe’s run I was back home by 10:30 a.m.
Typically I love to read but after a few minutes with my nose in a book I looked around my living room thinking, “Man, it is soooo quiet in here.” Too calm and neat. Where is my wild, non-verbal for the most part, boy with autism? Why isn’t his brother Brandon here to push him off the new bungee chair so he could take a turn bouncing in it? And man, the couch actually has all the cushions on it without Luke here to throw them off so he can burrow down. I even started wondering why I vacuumed up all the food crumbs that get everywhere because it’s so hard for Luke to sit still and eat.
I wonder what it means that I miss the quieter times when I don’t have them but then I miss my two awesome boys when they aren’t home. When Brandon comes crashing through the front door and Luke dashes off the bus to see me it makes me smile. But after a couple hours of keeping up with Luke I’m back to, “Can I sit down yet?”
As is the case in every moment and in every way I need the Lord to help me be content in each moment and not be waiting (impatiently!!) for the next.

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Life After Joni and Friends Family Retreat

My family and I left Joni and Friends Family Camp yesterday and leaving was tough.  If you’ve ever gone to one of these family camps you know what I mean. Today as I pondered my thoughts and feelings post camp God helped me put two top 5 lists into words.  My friend, Diane Kim, who just got home from a Joni and Friends Camp (in California–ours was in Michigan) encouraged me to share these tips.

Top 5 Things You May Experience/Think Post Joni and Friends Family Retreat

 5)  When stopping to eat on the car ride home your eyes glaze over as you wonder, “Wait, what happened to our wonderful STM? (short term missionary for those of you who don’t know family retreat shorthand) You mean we have to manage this all by ourselves?”

4) Culture shock.  We’ve been in a wonderful Christian community where meltdowns are normal (from us or our special needs loved oneJ).  Not so once we drive off the Maranatha campus.

3) Where is my baked oatmeal and all the other delicious food served in the dining hall?

2)  You mean I have to go home and do all this laundry?

1)  Where is Sandy’s calm presence and how am I supposed to know what to do next without Michelle’s announcements?

 Top 5 Ways to Take Care of Yourself After Family Retreat

5)  Remember the truth.  Even though we don’t have the wonderful Joni and Friends family around us God is still with us, He is still working and He still loves each one of us.

4) If possible, try not to schedule too much the weekend after camp so you and your family have some time to decompress—and do laundry!

3) When you sin (which we all do) ask Jesus for forgiveness, get back up and keep pressing on.

2) Go easy on yourself and each other as you adjust back into the “real” world.

1) And remember, at least now we can start counting down to Joni and Friends 2014!


 –Picture taken by Brandon Abbs

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Taking Time to just be together–A lesson Chewie taught me.

***I wrote this right after Chewie died last September.  Recently Brandon said, ” I don’t want to disrespect Chewie but can we talk about if we will get another dog?”  I’m not sure I’m ready!  Read on….

Well it’s official.

 I obviously should not be out in public.  Nor do I know if I’ll ever be able to wear any other kind of mascara except the waterproof variety. 

Our beloved dog, Chewie, died two days ago and instead of sitting around crying (which believe me I have been doing!) I decided to run to the store.  First, I tried donating back Chewie’s unused syringes thinking maybe some other furry friend could use them (Chewie had diabetes).  “Sorry we aren’t allowed to take those back.  Well, we could but we’d just throw them away.”  With tears starting to leak out of my eyes, I blubber, “You would just throw them away? No!” while backing away from the counter with the aforementioned needles.  As I’m racing out of the store my eye catches on a plaque that says something about a house not being a home without a dog in it.  And the flood gates, or in this case my tear ducts, burst open.  I drive home with my tail between my legs (It would be if I had one!) and comfort myself by remembering that my tough cop of a husband had tears in his eyes yesterday morning when we woke up and realized that Chewie had died during the night. 

I’m glad I have some time during the day to grieve the loss of our furry friend while my two boys are at school.  The story of how we got Chewie, short for Chewbacca, (Yes, my husband Mike is a BIG Star Wars fanJ) goes something like this:  Way back in 1998 after much, much begging and pleading on my part Mike agreed to get a dog.  Well, not exactly.  We saw this little fur ball with HUGE brown eyes– who could, by the way ,fit in our winter coat pockets–and this was the dog for him.  Not just any dog would do it had to be this one.  And ANY dog Mike said yes to was the dog for me!

Chewie, was our first baby,( albeit a furry one) a reddish, brown Pomeranian with a white stripe on his face and white paws.  Many have said he looks like a little fox.  He was just adorable but also a tiny spit fire!  He raced around the room doing loops and laps and cracking us up. 

Oh, how I wish we had a video of it—but we will just have to remember in our mind’s eye. He wasn’t what I’d call an easy pup.  As is typical he loved to chew and many a shoe and sock were casualties.  Potty training, as is the case I’ve heard with small dogs, took quite awhile.  Or maybe we just didn’t realize back then that a puppy requires a lot of attention and training.  But oh how we loved him and brought him around to show off to family and friends. 

Our first human baby, Brandon, arrived in October 1999 and man was Chewie boy jealous—and with good cause!  So much attention was taken away from him!  Poor pup.  Little guy that he is (even full grown he only weighed about 12 pounds) he managed to move a futon across the room with his small mouth to get our attention and say, “Hey remember me?”  But, luckily for Chewie, as Brandon grew up he fell in love with Chewie.  And he became Chewie’s biggest  fan, taking hundreds of pictures of him.

Luke, who arrived 5 years after Brandon, well, we aren’t so sure what he thinks of Chewie, because Luke has autism and is mostly non – verbal.  But, since Luke is always eating things like sausage and pepperoni, Chewie  loved to follow him around and wait for him to drop a treat on the floor.

                In the last few months we’ve known Chewie’s time was getting closer.  He was 14 and had thyroid trouble as well as the diabetes I mentioned before.   In May he developed a cough and  X-rays the vet took showed fluid on his lungs as well as an enlarged heart.  So new medicines were added into the cocktail mix. 

In the last few weeks he had been sleeping more, having accidents in the house and he developed an ulcer on his eye.  We talked to Brandon and he seemed to know that Chewie wouldn’t be with us much longer, although since Chewie still had some bursts of energy we hoped he’d make it until his birthday in December.   After a really rough weekend for Chewie I made the dreaded appointment with the vet for a couple days out.  We spent the day before the appointment petting and cuddling Chewie and taking pictures. 

                And then overnight he died at home so we didn’t need to bring him to the vet and he showed us that it really was his time.  We are thankful to God that He allowed us to have the day saying  goodbye  to our beloved pet but we are still grieving the loss. 

Because of the pain now do I regret the decision to bring Chewie home with us way back in March of 1998?   Definitely not!  The decision I do regret though– or maybe saying the little decisions I made repeatedly is more accurate– is letting the stress and busyness of life get in the way of spending more time with him.  Just playing, petting and cuddling him.   Simply being near and focusing on good old Chewie dog instead of rushing around getting things done.  Granted, there always seems to be less time in the day then is needed and caring for my youngest son, who is a special needs kid like I mentioned can be exhausting.  But aren’t there always reasons (good and bad) why we let time with loved ones, including those with four legs, get in way of just being together?  

In our on –the- go -multi-tasking culture I/we need to make more time to simply be with family and friends.   To slow down, take a deep breath and pet our family members with four legs.  I wish I could pet Chewie now that’s for sure.  Like I said, it will be awhile before I can use mascara that isn’t waterproof.

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From my time in Cancun

I walk into the relaxation room in Westin’s spa and it’s empty.  Calming music, comfy chairs, plush towels and the Jacuzzi await my arrival.  I drop my bag on the nearest chair and head for the hot tub. I slide in the water and aaahhh…the jets massage my back and I feel so relaxed and peaceful.  But after a couple minutes something is niggling at the back of my brain.

And then it hits me. I sit up in the water and open my eyes.

The Lord, who made EVERYTHING and amazingly calls me His daughter, offers me peace through Jesus when I enter His presence.  But how often have I slowed down lately and entered in?  Why so much of the time am I leaving the “room” empty, like this spa room?  Just like this beautiful room was waiting for me He is always waiting for me—for us—to come to Him.  So why don’t I?

How sad that I rush around acting like I have to hold every plate in the air instead of coming to be with the Lord.  And remembering that He—the Lord of the universe, Hope of the world!—is the one holding up all the plates.  Every single one.

“Lord, forgive me and help me, “ I pray.

Knowing that He does I let breath deep and lay back in the water letting the jets massage my back.  Thank you Lord that I can relax in Your peace.



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More Back Up Needed!

As my cop husband has said both on the job and when our boys were newborns, “We need to call in for back up!”  My sister-in-law Carrie did just that this morning when her son, Teddy, also on the autism spectrum like our Lukey boy, was having a meltdown.  She didn’t know how she was going to get him dressed and in the car to take her daughter and a neighbor girl to school.

I would have loved to help but unfortunately Luke’s bus wasn’t coming for another 15 minutes so I couldn’t leave my house.  Plus, he’d been up most of the night (his sleep issues are typically helped with medicine but not always) and therefore so had I and we were both grumpy and exhausted.  Thankfully when we talked a little later Carrie had managed to get all three kids in the car and to school.  But it got me thinking….what do we do in our special needs world when our own back up people need back up at the same time??  Because as we all know things like this can happen every day…or on tough days every few minutes!

I am blessed to have a wonderful family and awesome friends but when it comes to calling for help if Luke is out of control, besides my wonderful mom, I typically get in touch with someone who is on the front lines with special needs themselves like my sis-in-law or my sister at heart Amy or my writing buddy Kelli.  Why?  Because they just get it.  And they will come running when they can –as I hope I do for them—but what about the times they are dealing with their own special needs folks?  They can’t very well come help me clean up yet another poop mess from Luke while they are dealing with their own various messes at the same time.

I don’t know what the answers are but I would love to hear some of yours!   I am very thankful for our insurance that covers the main chunk of the bill so that Luke can have wonderful ABA therapists come to the house several hours a week and be a big part of our back up team.  Not everyone has that. And I’m thankful for the special needs room at First Baptist Church  of Geneva that allows my husband Mike and I to worship together while Luke is cared for and having fun in his room (thanks Michelle D, Michelle F and Andrea:)

I’m also thankful for two newer online resources.  One is a Facebook page for those in special needs ministry (I help with this at my church, alongside Kelli Anderson who I mentioned above and she started the page) so if you are in involved in special needs ministry and on FB check out “Special Needs and Disabilities Ministry Leaders Forum”.     And very recently, Michael Woods, the director of special needs ministry at First Baptist in Orlando started a blog for special parents called “Not Alone” at www.not-alone.org.

So leave me some answers (or questions!) in the comment section, check out the resources I mentioned above and what will I be doing  before my kids get home from school?  Taking a much needed nap and getting ready for round 200:)

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Excuse my french but shit happens….

“Shit happens” or so the saying goes.  But it’s much better when it’s in the toilet instead of all over the carpeted floor at your mom and dad in laws place.  Thankfully the poop mess was in their basement and the carpet is the indoor/outdoor variety in a dark shade.  But still.  I had been so proud of Luke today, Christmas Eve, until that happened.  I have wonderful in laws and love celebrating Jesus birthday with everyone but there are a lot of us in a small space and Luke did GREAT for 3 hours—no meltdowns and mostly happy in spite of all the noise and Christmas chaos.

Then he was left alone in the basement (dumb me!) for a few minutes and the mess happened.  After we got it cleaned up Luke and I headed home but Mike and Brandon are still celebrating at his parent’s  house.

All this has me thinking….two main things.  I can choose to be upset about this (which I was on the car ride home!) or focus on things I’m thankful for.  My attitude and focus is really all I can control anyway.  So I’m thankful for my family.  My brother in law , Steve, who opened the door when Luke and I arrived with a,  “Anything I can do to help?”.  His wife Carrie was one step ahead with things Luke needed.  And my sister-in-law, Kim, created a present for Luke that was truly a labor of love.  Knowing he loves playing with ribbon she used scissors and created a big box of ribbon curly cues for Luke!  I think they may last for a year!

The second thing is this.  If Jesus’ first Christmas was far from perfect (no room at the inn, a cow’s feeding trough to be put in instead of a bassinet) why should I expect mine to be perfect anyway??

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