Thursday, May 8, 2008

"Struggling" to Visit Northern Michigan

The kids and I spent a great few days in Michigan last week. Part of the time we went to Grand Rapids to visit family, and during that visit spent some time at the Frederick Meijer Gardens. This is a great family spot to visit and is completely wheelchair accessible --even all of "Tree House Village"!

Something funny happened on the way out of the Gardens, though, and it reminded me how so many people view our family. A very well meaning man walked up to us. He had his infant son with him and he approached me as I was placing Nappy's chair in the back of the van.

"Excuse me," he said, hesitantly, obviously nervous, "I just wanted... to take a minute and talk to you. God told me to."

I was a bit perplexed by his statement, because I communicate with God fairly frequently, and God hadn't mentioned word one about this guy to me. I pointed out to God that it would be nice if He would let me in on these things. It's like I'm always last to know. I smiled at the guy, thinking that he might be planning to ask me about adoption. At least I was hoping he was ,because I'm always prepared to give my "Millions of Children Need Families, Yes That Would be Great if You Adopt" Sermon.

"I wanted to ask you about your daughter.... I.... is there something I can pray for? What's her ailment?"

Ailment? I thought. Was she coughing and I didn't notice? Oh no, she was sick again and I just didn't pick up on it because she never acts sick! How embarrassing!

"Is she in pain?" He continued.

"Pain?" I asked. "No, she's not in pain."

Then I realized that this was about the wheelchair, so I responded, hoping to stop the questions. I toyed with claiming she had Fetal Alcohol Syndrome and that I'm still despondent over my poor choices during pregnancy, but thought better about that.

"She just has arthrogryposis and can't walk."

"Is she terminal?"

Aren't we all? I thought, but decided not to say so I wouldn't burst his bubble. Maybe that hadn't occurred to him yet.

"Uhhh... no more than anyone else."

"Well, I just really feel like God wanted me to talk to you and let you know that she can have his blessings and healing and that she is very valuable to him. And I would really like to pray for her."

So, figuring that we can always use more prayer, I told him he was welcome to offer to pray for her and asked Nappy if he could. She looked at him, stuck her lip out and said, "NO!" (I don't think that this guy really knew what parts of her need prayer.)

So, he talked to her instead, and said, "Well, I just want you to know that God loves you. I saw you struggling this morning and I know that sometimes life can seem really hard...."

Struggling? Life can seem hard? What in the world was this guy talking about? She wasn't struggling (okay maybe a bit because we kept dumping our coats and stuff on the back of her wheelchair and making it really heavy for her to wheel, but we also pushed her alot too!).

It struck me as so odd. How could this man possibly see struggling when all I see is victory? Here is a little girl who only a year ago spent most of her day sitting and watching other kids play, unable to get herself around much, and who had absolutely no future. Now she's wheeling everywhere, trying to walk, climbing all over the place and enjoying her ability to explore the world! Here she is talking up a storm, learning her letters and counting, making jokes, and constantly pretending to be a princess or a puppy or even a duck! How could anyone look at such an animated face and think she was "struggling?"

The next day I told my friend, who has happened to live her entire life without legs, that maybe God did tell that guy to come up to us. Maybe I dropped the ball because I was supposed to explain to him that life with a disability isn't a struggle, but it's actually a celebration of one victory after another as you see God redeeming things you never thought could be redeemed and you get pictures of beauty that most of humanity will never glimpse.

She assured me that there was probably nothing I could've said that would have gotten through to that guy. As she pointed out, the burden was his, not God's. So, I guess a gracious quiet was the best response.

"Sometimes rather than healing you, God chooses to inhabit you," She said. Beautiful truth from a truly beautiful person in whom the spirit of God obviously dwells.

You have to really desire to understand the heart of God to understand which is so much much better.


Darcy said...

Deb I always love reading your blogs. I could so relate to your comments about parenting a child who is "different." Our daughter Bryn was born with syndactyly and had fingers fused on both hands. When we went for her x-rays the x-ray tech asked about her "disabilty". I looked around wondering where the child was with the disability cuz as far as I knew when you can do anything a "normal" person does that just makes you different, not disabled! I have more mama bear in me than I ever thought possible. Blessings.

MoonDog said...

my sophie has amc and her legs are at about 90 degrees at the knees. I saw the video of your daugher walking. today the doctor we saw basically said give up. there is nothing we can do for her. are your daughter's knees in flexion as it appears in your video? we are in MN and went to Shriners and are so disappointed in this "diagnosis".

Deb said...

Well, we were told she would never walk, never work a manual chair (her arms are locked as well) and never be able to climb into her chair. She's now done all three. She's only walked at therapy, though and last week was the first time.

It's taken about 2 years to get this far. We did a combination of botox injections with serial casting and a lot of prayer (mostly prayers that we would be content with what God had as far as an answer). She started with the left locked at 100 and the right at 90. Have you tried botox?

At Shriner's (Kentucky) we were told the same thing, and an orthopedic surgeon at our local children's hospital told us that as well. From a surgical standpoint, it was too drastic a decision and would make for poor sitting position. However, when we started going to a rehab doctor, then she was able to send us on a route that was non-surgical. However, the expectation was that we would never get this far. We tried one round of botox, hoping to gain a max of 15 degrees of flexibility and miraculously got over 50 degrees.

However, it's been two rounds of casting on her legs (to try to get them to under 30 degrees -- the right one is in the 20s and the left, unfortunately was at 30 and clubbed back to about 40) and weekly PT. It's still questionable if it will be "worth it", as we don't know if we'll get functional walking or as the doctor at Shriners told us "walking only for therapy".

MoonDog said...

thanks for the pep talk. we are ok if she needs a chair in the community but we want her to be able to ambulate well enough to transfer, get around inside the house,be independent some day. that isnt too much to ask is it? even though no one told me to I decided that I will work with her on ROM in her legs. if it will work in her arms why wont it work in her legs? how can one doctor for the uppers say increase the ROM and another doctor for the lowers say you cant increase the ROM you only have what you have?

Deb said...

Our thoughts were pretty much the same. Even to be able to stand to transfer to a toilet makes a difference in ease. We have had good results with serial casting, but I guess results vary. I think it's certainly worth looking into/trying.

In addition to all of that, we felt like we wanted to be able to tell her we tried what was available. However, we did have to see a rehab doctor to get this type of therapy, and we were seeing an ortho at Shriners.