Saturday, September 27, 2008

Our Little Miracle


The story starts that we adopted this little girl from Ukraine, and decided that we needed to plan that her disability would never change. We decided this because after adopting our oldest daughter, Swimmer Girl, we dealt with the grief of realizing that her disability would never change. It was extremely painful, and neither of us wanted to face that kind of disappointment again.

Realize, of course, that once we got past that grief, Swimmer Girl has been a great joy. How can you be nothing but proud of a child who so gracefully and faithfully rises above such severe physical disabilities? I often think of her like a modern-day Elijah, when he, by the power of the Holy Spirit, ran faster than King Ahab's chariot. How does she do it? How does she swim like she does? How does she walk? How does she play the piano so beautifully?  How does handle papers and books and opening packages?  How does she manage to carry so many things?

Still, that grief of dealing with the finality of her situation was something I just didn't want to face again. So, we went into Nappy's adoption with the mindset that she was not going to change. Once we got her home, three different doctors agreed with us. We were okay with that because we had seen how God's Glory was revealed through Swimmer Girl's life, and it was really really good.

So, we became comfortable with life as it was presenting itself. Then a doctor ordered a 350lb powerchair that we just simply couldn't accommodate in our lives, and began to push us to put her into therapeutic preschool 5 days a week. None of it made any sense to us. People were jumping the gun, telling us that she couldn't do things that she had never even tried to do. Why would we take on the financial burden (which was huge) of this chair, and rearrange her life and our family life around her disability when no one had even bothered to see what she could do?

So, we bought a manual chair off of eBay for $100. It was the wrong size, way too big, and yet, she was wheeling around in it on her own from the first evening we had it.  I guess she had no clue that she couldn't operate a manual chair. 

It was then we began to realize that maybe there was more than one way for God to reveal His Glory in the life of a person with a disability. So, we ditched the therapists that were offering adaptive devices, therapeutic preschool and other stuff and started pushing for therapies and interventions that would actually make a physical difference in her life. We found a doctor that would accommodate us.

Several months ago, that doctor ordered Nappy's first round of serial casting to stretch her legs straight. We had botox injections done in her right thigh to weaken the constricting muscles and then 3 weeks later started the therapy. Our doctor warned us that Nappy needed to gain over 60-degrees of flexibility in each leg to walk, and that that was really out of the question. The most gained in one round of serial casting recorded was 30-degrees. About 15-degrees was much more typical. She doubted, because of the tightness, that we could gain even that.


We began the process of serial casting. Every 1-2 weeks her leg was stretched a bit more and a new cast was placed on it to stretch the muscles and release the joints. Each week, the therapist would record the changes, and it was like watching a slow motion miracle. After 7 weeks, Nappy had gained almost 70 degrees of flexibility in that knee!


At the same time we were working on her leg, God sent us the perfect occupational therapist.  From the start, she said that she believed that Nappy needed to gain more flexibility in her shoulders, elbows and wrists in order to achieve the goals that we had for her-- goals of putting on her own shirt, buttoning and zipping jackets and drinking from cups without straws.  Those may seem small, but try to do all those things without bending your arms.  

So, we took measurements of her flexibility in those joints and then began the therapy.  I won't bore you with details, but will just say that in the course of this therapy, we've seen our second slow motion miracle.  Her rehab doctor claims that Nappy has gained more flexibility in her arms than she had hoped she could after a couple rounds of botox and serial casting!

In fact, her doctor said that there is only one word to describe the changes in Nappy's body.  One word she doesn't use lightly:  miracle.

We really are witnessing a miracle.

As of now, it really looks like our little girl is going to walk.   And, while we have medical science to thank for it's help, even the doctor knows that this is happening by the hand of God.

In the past month I've really tried to process what we're watching.  I have always believed in miracles, but have never actually witnessed one.  What has overwhelmed me in these past few months is this:  God loves me enough to allow me to witness this miracle.  Watching His healing hand change these joints is the most incredible thing I've ever seen in my entire life -- so much more valuable than any thing this world can offer.   I feel like a little kid who's parents have just given me a gift that I wanted so desperately but was afraid to ask for because it was so lavish and immense. 

Through out this process, as I've prayed with Nappy, we've talked about what God is doing.  Before she'd tell me, "I'll walk in heaven."  Now she'll tell me, "I'll walk in this room.  I'll walk on oaf (earth!)".  Then I'll tell her, "It sure does look like you will walk on earth, but even if you don't....

And, she'll finish it for me, "GOD IS GOOD!"  



Friday, September 26, 2008

Tony Melendez





This is the life I envision for my girls! What a great life of faith, hope and purpose!


Saturday, September 20, 2008

Bist Du Fertig?

Many years ago, not long after becoming engaged to my husband, I asked him what, exactly, our last name meant. He told me that it was a German name and that it meant "carpenter". So, I felt very proud to enter into a family name that held meaning, much like "Wheeler" being the town's wheel-right, or "Smith" being the town's silversmith. My maiden name has been far too mangled from the original German to mean anything. So, the only meaning I can attach to my side of the family goes with "Campbell" -- which I would assume meant that side of my family was the town's soup-makers. So, finally, I had an identity to attach to my last name.

Something never sat right with me, though. I actually know some German. I'm not fluent in the language, but studied it for about 7 years and got to the point where I could write papers, and read German newspapers and magazines. The German word for carpenter is "Zimmermann", and that's not our last name. But, short of a better explanation, I went with it.

Well, last week Lawyer/Social Advocate Boy told me that his Sunday school teacher asked the kids to look up the meaning of their names in order to share with the class. I decided to double check this whole "carpenter" thing and did some online research. It turns out that our family name has been very researched, and even has it's own website. And, it doesn't mean carpenter -- it means "am ende", at the end. According to the website it meant we were the family at the end of the street or at the end of the village.

Okay, that's slightly less noble than "carpenter" . We're not the family that builds or repairs furniture, we're the family that lives at the end of the street. Not known for anything, just for living at the end of the street. We're vanilla, egg-shell white, no more exciting than Bob Dole.

But then, I reflected upon a bit of my own German experience. While in high school, our class hosted a German exchange student. Once, during a school skate, I sat and chatted with a group of girls, including the exchange student, while drinking cokes. As we finished our drinks, one girl said to the exchange student, whom I'll call Helga, so as to help perpetuate any German stereotypes, "Bist du Fertig?"

We had learned, in our German class, that "fertig" meant, "finished, ready to move on."

Helga looked at us like we were nuts.
"Was?" ("What?" -- for all you non-German speakers!)

"Bist du Fertig? Are you finished?"

With that Helga started laughing and quickly explained that while "bist du fertig" literally meant "are you ready to go?" it was really used as slang for "Are you crazy?"

So, I wondered, does "am ende" really mean the family at the end of the street, or does it mean "the family off the edge?" "the off balance family" "the crazy family"? hmmm...

Saturday, September 13, 2008

Lest Anyone Think I'm a McCain Fan

Lest anyone think I'm a McCain fan, due to my recent post about Joe Biden's hiney, I thought I should post a bit about McCain and Palin and my concerns there.

McCain -- I like the fact that he and his wife do seem to have a compassionate aspect to their lives. Yes, they are filthy rich. But, really, so are the Obamas, so I don't see how that matters. I also like the fact that they are hearing the cries of so many families of children with special needs, specifically the families of children with autism. Obviously, the growing rate of autism should be a concern in our nation. I'm skeptical that any federal aid to our health insurance situation is going to help, so I also am comfortable with his positions on health care. I don't think that two wrongs make a right, so I'm with him on abortion and the need to obtain stem cells in an ethical manner.

What I don't agree with him on is the war. However, Obama's going to inherit this war, too, and I'm not certain that he really knows what he's doing either. Yes, they both inherited this war from George W., but really, he inherited the situation from Bill "floundering with foreign policy" Clinton. He inherited some of it from George Senior .... at some point we have to stop pointing the finger and just solve the stinking problem.

We need to invest more in diplomacy, which is not something I see either candidate saying. I see McCain upping the ante in the war, and Obama sticking his head in the sand. This summer I attended a small seminar on foreign policy, with the discussion being lead by a man that spent 30 years working in diplomatic relations for the U.S. government. He pointed out that when he was sent to a new part of the world, as a diplomat, he was given a 4 week course on that region of the world, and then dropped into it as a diplomat. When an upper level military person is stationed in a new part of the world, they receive near-graduate level training on that particular culture -- usually at least a year's work of education. What does that say about our government's values, be it democrat or republican?

Then there is Palin. I like a lot of what she professes to be policy. I admire her decision to birth her son with Down Syndrome and show so much love towards him, although isn't that just what a mother is supposed to do anyway? I also, frankly, question how someone can be an effective VP of a major nation and give appropriate time and attention to a large family. Maybe her husband is planning on staying home with the kids. If so, kudos to him and I'm impressed with their family. If not, then I don't think that Sarah Palin actually has the same values that I have. The values I have don't just value that the life of my child exists, my values dictate that I give large quantities of my time to my child.

I can run the nation when my kids are grown. Until then, I can only blabber away on a second rate blog.

Another concern with Palin, of course, is her inexperience. Let's face it. John McCain is old. Could Palin act as president? It's unsure at best. She really seems clueless on an international scene.

The worst thing is, though, that I'm no more confident with Joe Biden.

They' re all just a bunch of ..... politicians.

Let's hope congress shapes up!

Thursday, September 11, 2008

Travels with Deb

Obviously I've been a bit weak on blogging lately. Now that the school year has started back up again, I plan to grace your computer screen much more often -- blithely spewing my insights, humor and twisted political rhetoric into your otherwise peaceful day.

So, where have I been all summer? Well....

Our summer started off with Lawyer/Social Advocate Boy participating in a 2-week video camp that was held at the local public access television station in downtown Cincinnati. The camp was great, and, even better, it was free -- unless you count the gas money spent to drive to and from downtown to my suburban home for 10 days. It capped off with the lovely adventure of me forgetting to pick my beloved eldest son up from camp, and thus leaving him waiting for me for over 30 minutes on the corner of Race and Central Parkway. I had nothing to fear, though, because a nice gentleman, who just happened to have multiple body piercings and was smoking a cigarette, waited with him. He told me I had a great kid.

Following video camp was our church's much anticipated Vacation Bible School. I have to admit it was mostly anticipated by me, because it was the first time that I could drop all 5 of my kids off someplace at one time! 2 1/2 hours of free time for 5 straight days! I had visions of me sipping cappuccino while reading Dostoevsky, learning to play an instrument, taking up mosaics , writing the great American novel, waxing philosophical in a coffee house somewhere downtown, or in a less elegant yet realistic moment, visions of me napping on our living room couch.

However, the week before VBS, we decided to put our home on the market ASAP, and I spent the week painting... painting.... painting and painting. And, I hate painting. I hate it more even now. (Plus, our house still hasn't sold!)

The following week, we took our first vacation of the summer. I'm not really sure what insanity caused me to plan a camping trip to a gorge, when I have two physically handicapped children. However, I guess it was that I really want them to experience life to the fullest.

Plus, I figured that if Nappy was ever going to go down into a gorge, then it was going to be on someone's (mine) back, and that was only going to happen when she was little. As the trip approached, though, I was a bit daunted by the 7 days I had booked the campground. Rainy weather saved the day, and we ended up wimping out of about 4 days of our trip. We stayed at the nice Internet-linked, cable television access, air conditioned home of my parents. They, however, were busy at an elder hostel in New York with Swimmer Girl. We did enjoy a day at the small zoo/fun park in Pennsylvania called "Deer Park."


I even had the joy of placing my children in jail:









Unfortunately, Green Bottle Boy worked against me and they were all out within minutes:





After several days of vegging, and making pitiful jokes about us enjoying our vacation at the retirement center, we headed to Watkins Glen, New York.

No. We didn't go there to see the race cars. It happened to be the location we had to get Swimmer Girl to in order to attend the elder hostel, and we wanted to see the Glen.













































We arrived home and jumped back into Farm Camp, Woodland Lakes Christian Camp, the end of swim season and the peak of 4H season. 4H projects included, of course, chicken and duck farming despite the fact that we live in a suburb and have a very typical backyard. Word spreads fast when you live in a typical neighborhood and are housing chickies and duckies, and every kid that lives within 1/2 a square mile of our house was visiting us. In fact, the following interchange was not uncommon:

A knock on our front door.

Either I or Rob answers while the dogs stand behind us barking like they would actually protect our house if it really was an intruder and not a 4-year-old at the door.

"Yes?"

"Can I have one of your chickens?"

"You want one of our chickens?"

"Yes. Can I keep one?"

"No."

"Can I buy one off you?"

"Yep. For $150."

"Oh."

"Good-bye." And, with that a door would close on the child and all their hopes of having their very own chicken to love, raise and then, ultimately, eat.

The ducks and chickens left us the week of the fair.








































Several weeks later, while on vacation at Lakeside, Ohio, we ate Calm Wind -- possibly the best broiler I've ever eaten. I'm very thankful that Green Bottle Boy loves agriculture and raising meat. It's a great hobby that's now been embraced by 3 of our kids!

We finished our summer with our week at Lake Erie, in the gated community at Lakeside, Ohio. The boys loved the freedom of the community, being able to play shuffleboard in the park, swimming at the beach, a sailboat ride out onto the lake, and riding bikes everywhere. Swimmer Girl loved the theme for the week: the Civil War. I enjoyed taking the two little girls to hear a live performance of Rachmaninoff's Second Piano Concerto. Rob enjoyed relaxing. And, Nappy enjoyed the playground.
video


We finished our summer with a quickie surgery on Swimmer Girl, and now we're off to a quiet school year at home....we hope.

Wednesday, September 10, 2008

Biden Needs To Get His Little Hiney Out of Dream World and Into Reality

Could somebody out there give me just 5 minutes with Joe Biden? Just 5 minutes! Perhaps he could actually walk away with some kind of idea as to what advocating for the disabled and respecting life actually means.

In reference to advocacy for people with disabilities, Biden made the following snipe:

"Well, guess what, folks? If you care about it, why don't you support stem cell research?" asked Biden, the running mate of Democratic presidential nominee Sen. Barack Obama.


First of all, stem cell research is not as advanced as the proponents of it would like people to believe. I'm really tired of hearing about how the "cures" for diabetes, spinal chord injuries and other illnesses are just steps away but can't be found because we, as a culture, don't have access to enough stem cells.

For years I listened to the American Diabetes Association herald this cry. Then I actually read the research and learned that, like many of the other illnesses, the "cure" was not around the corner, but decades away and possibly not even linked to stem cells.

Secondly, most conservatives are not against stem cell research -- most conservatives are against harvesting them from embryos. Get your stem cells ethically and then research away! Personally, I just don't believe that you take one person's life to solve the medical problems of another.

Thirdly, not all disabilities can be "cured" through research from stem cells. So, advocate away for your stem cells, Joe, but your advocacy doesn't do a bit of good for someone who has a disability due to amniotic banding or their birth mother drinking alcohol while pregnant, nor thousands of other reasons that people end up with disabilities. Not to mention, it's certainly not going impact the life of any person right now.

To reduce disability advocacy to stem cell research is simply a way to politicize a new topic (disability rights and services) that both he and Obama are clueless about. In the meantime, while meaning to slam McCain and Palin, he has totally offended me by seriously implying that I don't care about the disabled because I don't support unethical stem cell research.

Thanks Joe! Glad my life counts for a hill of beans in your book!

Well, guess what, folks, if you care about the disabled, then why don't you actually research what can be done to support them and their families?