Just a Freak Show on Wheels

This time, for some reason, it was bad.

We (corporately, as a family) have developed a fairly thick skin over the years. (although you wouldn't know it to read this blog!) We just automatically block out the stares, the comments, the rudeness as much as is humanly possible. But this time, it was too much for Twinkle.

It was a busy week night at The Big W-M; it was a nice (unseasonably warm) evening, and families are out in full force. Little kids almost always stare and point, but what probably pushed Twinks to the edge this time was that there were so many of these incidents within such a relatively short amount of time.

The fact that she is exhausted from being in pain all of the time doesn't help either; when she is worn out like this, she tends to be more emotionally sensitive as well (as most of us are) and so the ordinary annoyance becomes a HUGE disturbance.

By the time we got our shopping done, and were in the check-out line, I knew she was on fairly shaky ground.

As she rolled across the parking lot, she looked up at me with tears standing in her eyes, and asked me if she was "just a freak show on wheels".

No, Twinks, you aren't.

You are just an incredibly brave little girl trying to make it through the pain until we can get a diagnosis, and treatment.

You are smart. You are funny. You are loving and sweet and kind. You are many, many things, but you are NOT a freak show on wheels. As long as you remember that the wheelchair is only a tool - only a mechanical means to an end - you aren't the one with the problem.

Puberty is tough enough without going through it on wheels. I hate it - more than I can express here - that The Twinkie has to start through this time in her life feeling so very much more different than everyone else. Because I can look back from my lofty perch of 40+ years, I can try to tell Twinks that everything will be OK - that this is NOT the best part of your life right now (if you peaked at 12, imagine how depressing THAT would be!) and that the best is most certainly yet to come.

But at 12, I was not yet really ready to listen to everything my mother had to say. As is so often the case, I was certain that there way no way my mother could ever remember even being 12, let alone understand how *I* felt!

Boy, was I ever wrong. So now it is my job to help Twinks through this part of her life, based on our current circumstances - not on some fantasy world. Sometimes, it will suck. I won't kid you Twinks - I don't operate that way and you know it. Try, if you can, to remember that those who treat you poorly usually aren't mean - they are simply uneducated about you and your situation.

You aren't "just a freak show on wheels". You are so much more, and I hope you can remember that in the days to come.

Introducing our New Look for Spring...

I thought it was time.

I hoped that by changing the template, and fiddling around a bit, that I might begin to feel a bit more... um, shall we say, cheerful.

You know me... I groove on the whole "spring cleaning" thing anyway, and I seemed to have a case of cabin fever. Thought that clearing out the cobwebs, and going with something a bit more serene might be just the ticket.

Instead of sinking into the darkness and despair, I decided to twiddle with my Blogger template. Therapeutic, free, and just the distraction I needed.

So, here is Our New Look for Spring '06: "Mr. Moto", tweaked just a bit by Thim.

Happy (Belated) Birthday, baby girl...

Dearest Twinkster, Girl of My Heart:

Yes, I know.

I should have had this all done, and ready to go on your birthday.

But you know how things have been lately. You've been *living* it. And so, as crazy and mixed up as things were this year for your Special Day, I wanted you to know some things now that you are Twelve.

First of all, you are standing at the very threshold of 'Teendom. And you should know that your father and I are working frantically in the background to figure out a way to keep you "Our Little Girl" just a little bit longer. You should also know that your father has been practicing his menacing glare for when the inevitable parade of young men begins to appear at the front door. That will happen all too soon for Daddy and I - and probably not nearly soon enough for you.

Next thing you should know is that every girl needs some things to make her way through the world. She needs a little black dress (remember that simple=elegant and there is a difference between "fitted" and "sausage casing") and a pair of low-heeled black pumps. She needs to know how to cook an egg three different ways (trust me...) and how to drive a stick shift. She needs a bank account of her own - and she needs the discipline to put 15% into savings every time she gets paid. Because financial independence is important. And being in debt sucks.

You should remember to surround yourself with people who are positive, so that you can remain so as well. You must remember that anyone who tells you that they are giving you "constructive criticism" is usually seeking more to tear down, than rebuild. You need to approach the world with your head held high, and your shoulders back, and your back straight; you have every bit as much a right to be here as anyone else.

And most of all, remember that the "mean girls" are just sad, lonely, scared little people. They have no inner resources to rely upon. They have no one who tells them how special they are, no one who is honest with them, no one they can trust. They are merely beautiful shells that seek the spotlight to try and warm the emptiness within... and they never understand that the warmth they seek can be found through true friendship and love.

Finally, as you grow up this year, remember that no matter what happens - no matter what you do, or what you say... Daddy and I love you with all of our hearts. You can never change that - no matter what. There is nothing that you can do to make us stop loving you. You are our one and only - and best and brightest and sweetest daughter. And because we love you, we will do things like fuss at you about getting your homework done, and making your bed, and cleaning your room, and putting things away. Because, believe me, if we didn't care about you, we just wouldn't waste our time and energy.

But we do care.

So very, very much.

So, here it is again - Happy Belated Birthday, to the best kid in the world.

We love you!
XOXOXOX
Mommy (and Daddy, too!)

One foot in front of the other...

We are going to go forward. We must.

The last 36 hours have been a blur of phone calls, and research. If you tried to use Google, and found it to be slow yesterday or today - blame me.

First, we are going to go and see another specialist. This one is a pediatric orthopedics specialist, board-certified. His "regular" practice is down at the state capitol, a two hour drive away (a mere walk in the park compared to the drive to Hospital City) but he is now coming to the Greater Metro Area on our side of the state twice a month - on the second and fourth Fridays. (insert wild applause here) This, by the way, is the doctor that we had wanted to take Twinks to nearly 12 years ago. At the time, he had a two-year waiting list, because he was (and still is) the only board-certified PO in the state.

We are in for next Friday. Didn't I tell you that everything seems to be happening in one-week intervals? Weird.

At any rate, I'm excited about seeing this new doctor. First, it will be WONDERFUL to have a local orthopod we can go see for the "minor" stuff. Don't get me wrong - I will forever be grateful to the Shriners for what they have done for our Twinkie, but 13 trips in 12 months has left me ready to come in off of the road. It will also be good to have a fresh pair of eyes looking at Twinks; someone without preconceived notions of who she is/how she should be. The doctors at Hospital City have truly watched her grow up; they know that she would have never walked without the surgery, the treatment, the PT, the braces that we have gotten there. She is a great success story to them... and while it is truly a blessing for us, I worry sometimes that they are so pleased with her "success" that they fail to fully see and understand her pain and weakness. I think that maybe sometimes all they can see is the sweet, sunny little girl clutching a handful of smiley face pins who has a hug for everyone she sees.

Ironically enough, I now realize that in many ways we have been spoiled by the Shriners Hospital. No waiting for the insurance company to decide what is or isn't covered; to tell us which hospital, which specialist, which procedure will be "allowable". We have the films from the MRI, and we are still considering sending them south to see what the doctors at Hospital City make of them. We are definitely taking them with us to the PO next Friday.

I'm still so relieved that it isn't tethered cord. Oh God, I am so relieved. The dark, abject terror that was filling my soul has begun to recede, but there is still a void.

The void is the absence of knowledge. I want a diagnosis, dammit. I want to know what is going on. I want to know if it will get worse, or get better. I want to know if surgery will be required. I want to know if her pain can be controlled - through orthotics or drugs or surgery. I want to know what this is. The enemy unknown truly is more frightening...

Our Twinkie is still in a great amount of pain (from the hips down) and her legs are weak (she says they feel like they are full of jelly) In the last 10 days or so, her lower back has started hurting badly also. Everything seemed to point towards tethered cord. The symptoms fit, the timeline was right. As much as I had hated the idea, tethered cord made sense. To everyone.

The neuro's office called this afternoon; they have already gotten the insurance company to OK the PT that he wants her to do. Fine. The therapist will call later to schedule Twinks. Fine. Thank you. Have a great weekend.

I feel like a terrible mother, because inside my head, I'm screaming at the receptionist that PT IS NOT THE ANSWER.

I feel like a terrible mother, because I should have followed my instincts, and put my foot down months ago, and not budged until someone REALLY LISTENED to Twinks about what was going on with her.

I feel like a terrible mother because there is something wrong with our child, and I can't seem to find out or figure out what it is.

I love this child so much. With all of my heart, with every fiber of my being. I would take her pain - if only I could! - I would take all of the pain for her in a heartbeat. I would give everything I own, now and forever, if it would mean she would never hurt. I would give my very life for hers, if only somehow she could be healed of whatever this is.

I hate that she is now a "medical mystery". I feel like we're part of one of those True Life Dramas® in Reader's Digest. The problem is, we are still waiting for the last part of the story to be written. My fear is that it may be a long time before that happens.

So for now, we keep putting one foot in front of the other. Literally, and figuratively. Until we arrive at the answer.

Mixed emotions

Well, we saw the neurologist yesterday for the MRI follow up.

The Wrench and I helped The Twinkie down the long, cheerless corridor. The three of us sat lined up in a row along the wall of the exam room. The Wrench and I held hands, Twinks fidgeted on the chair next to me.

Suddenly, the neurologist is in the room; he heads straight for the big manila folder that The Wrench is holding - the films from the MRI.

He slides the films out, and starts slamming them up onto the light box. He points, and murmurs. I can't understand him - my head is swimming with exhaustion and fear. The Wrench is trying to ask questions, but the neuro is moving quickly through the films. We make out a word here or there as he points rapidly to blobs on the films "kidney", "other kidney", "bladder", "cord here", and then, "fine".

I force words out - "Do you mean that everything is OK?", and I can hear my heart drumming in triple time in my ears. The neuro nods curtly, then slumps into a chair. He fumbles with the films, jamming them back into the sleeve, and then slides them across the desk to me.

He passes a hand over his eyes - and it hits me that he is as surprised as we are. He is baffled by this turn of events; he had expected to point out where he would need to operate. Instead, the four of us sit in an awkward silence.

Inside my head, a choir of angels is singing, because he has just told us that there is no tethered cord. My stomach, however, has simultaneously taken an express elevator to the basement; this means that we still don't know what is causing the weakness, and the pain. We still don't have an answer for our beautiful girl, who has waited so patiently, for so long for answers.

Mixed emotions, indeed.

I don't know whether to laugh, or cry. I stare hard at the neuro. He avoids my glare, flipping rapidly back and forth through the chart that contains the clues to the medical mystery that is our daughter. I ask him again, trying hard - and not succeeding - to keep the hysteria and the fear from my voice. "Are you sure? There is no tethered cord?". This time, he answers. His voice is quiet, and resigned as he says "No. No tethered cord."

The Wrench squeezes my hand; I can't bear to look at him and see what I am certain is on my own face. "So, now what?" The Wrench's voice sounds like mine - just a little bit high-pitched and with an edge to it. "What's next? What do we do?". The neuro runs his hands through his hair, now clearly distressed. "I'm going to send her to physical therapy" he finally states. "Don't want to lose any more muscle function." he mumbles, almost to himself.

Physical therapy? I want to stand and scream! PT!?! Instead, I slump back into the chair. I'm stunned; I feel cheated and lost. What happened to his declarations at the previous visit; I distinctly remember him saying that "we'll keep looking until we find the answer!" My voice is growing more shrill with each syllable now "What about her pain? What are you going to do for that?" He sighs, and pulls his prescription pad towards him. A few scribbles and he passes me a prescription. "What is this for?" I ask. "Muscle relaxant" is the reply. "Shouldn't bother her too much. You know, make her goofy or anything." A few more mumbled words, and we are standing, leaving, the three of us walking back down that long hall. Twinks is as stunned as The Wrench and I are, she wanders around the chairs in the waiting room, asking us "What are we supposed to do? What is wrong with me?" I go to the window to get the return appointment set up. The Wrench is trying to make Twinks laugh; he is clowning around. He approaches me, leans in, and whispers "It's gonna be OK" and then spins around to goof off with The Twinkster some more. I am on auto-pilot now, writing the check for the co-pay, setting the next appointment, talking about insurance and authorizations for the stupid damn PT and trying through it all to keep the idiot smile pasted onto my face.

Finally, we are done, and out the door. Down the elevator to the lobby. TW says it first; "He was as surprised as we were". I nod silently, still not trusting my voice. Twinks looks up at me with eyes full of hope and tears and fears. I already know what she is going to ask us. "Mama, is this good? Or bad?"

"Of course it's good!" I say heartily, forcing a cheer I don't feel into my voice. "Now, we just have to figure out the rest of it, but for now, we know you don't have tethered cord, and that's good, right?"

We struggle over to the minivan, parked in the handicapped area. We load Twinks in, and TW and I get into the front seats. We look at each other, and instinctively keep the conversation light. We won't rehash these events until much later tonight, when Twinks is asleep.

Twinks is still in a great deal of pain. She still has "jelly legs", and she still has back pain.

She also has no diagnosis.

I am delighted that it is not tethered cord. It means no surgery, no chance of permanent neurological damage, no concerns about re-tethering in the future.

I am devastated that we still have no diagnosis. The neurologist has been a huge disappointment for us. I want him to be certain of what is wrong; I want him to tell us what it is, and what to do. I need answers, and more importantly, so does Twinks.