Monday, August 18, 2014

Moved

Blogging has been my sanity, my salvation, and my friends for a good many years. I started Shoved to Them back when I was a terribly isolated and lonely woman who just needed to know that there were other people out there in the world. I was dying inside from lack of people, and hoped that maybe I could find one or two nice ones on the internet. I had no aspirations to professional writing back then, I just wanted an outlet for an extrovert stuck alone in a house with small children, and I found one.

Over the past seven years, I've explored my life, my opinions, my faith, and my own mind out here in public for everyone to see. It's been my free therapy and my place to grow.

And now it's time to move on.

My little blog has grown up and caught the eye of the indomitable Anchoress at Patheos. She made me an offer I couldn't refuse (she's a little like the Godfather but without the weird voice thing), and I'm heading over there. I'm hoping that you'll come with me.

I can't even begin to explain the love and gratitude that I have for my readers. You have taught me so much of what I know about friendship, generosity, and kindness. Some of you have been here from the beginning, and I think of you as friends I haven't yet gotten to meet. Others of you found me only last week, and I hope to get to know you.

Either way, I want to say THANK YOU! Thank you for hanging with me through the good and the ugly times. Thank you for making my little corner of the internet a place that I can't wait to come. In a strange way, this website is home to me. It's my living room, and y'all get to come and chat with me for a while....

So it's a little bittersweet to see my blog all grown up and moving on. It's hard to leave home no matter how and when you do it....but it's time.

The blog will be the same. I'll be the same. The only change will be where you find me. I hope to see you there!

HERE'S THE NEW LINK

Please adjust your blog rolls.

Tuesday, August 12, 2014

What I Spent It On

Last week, I was very fortunate to have two friends give me some money to spend on something fun and frivolous. It's not the money that felt like a blessing as much as having two friends who love and care about me did. Time and again, in the midst of the spirals of tragedy in the past two years, I have been gifted to find the love and care of friends and strangers alike. 

I might have been thankful for generous friends, but I still had some money to spend...so I asked you what you would spend it on. Most of you said you'd spend some extra money on pampering yourselves - pedicures, massages, and new clothes seemed to be the most popular. I considered them, I really did.

But I kept thinking about my husband.

In the midst of people's generosity to me, their desire to see me rested and cared for...he doesn't have a cadre of readers spoiling him and worrying about his mental health. (Maybe he should blog...) So I decided to split it with him. That wasy original plan. A 50/50 split of us splurging. It was a fun thought...which made me think of fun.

He doesn't get to play. When I went to Edel, he stayed with the kids. When I made an ill-fated trip through Buffalo, Texas, he stayed with the kids. He always stays with the kids. He likes it that way. His idea of an exciting weekend includes a mandatory trip to the farmer's market to talk to the beekeepers....about bees...

We're a classic case of yin and yang. That's why we work, but I wanted him to have a chance to play....so we left the kids at home and went to the water park.

We splurged on the line jumper passes (which were well worth the price), and spent 11 hours of screaming and whooping our way down one slide after another.

Halfway through the day, he was grinning the carefree grin he wore when we were dating. 

He was such a good sport about everything, that when he decided to do the slide which was a near-vertical seven story drop, I sucked up my fear of heights and went with him. That tower was high, y'all, and it swayed the tiniest bit in the wind but I was determined to not have to do the walk of chicken shame back down to the bottom. Once I was up there, the only way down was on a slide....and I'm no longer standing up there.

It was a day of fun and play. It was such a gift for me to be able to bless him with what I had been given, and for that I am most grateful to my friends. In caring for me, they gave me the ability to care for him.

So that's what I spent it on. A screaming, dizzying, play-filled day without my children. A day of reminding the man I married of the boy he was when I fell head over heels for him. A total splurge on nothing but a silly memory, which is sometimes the best kind of splurge after all.

Look! He's smiling!!!!


Okay, funny story from Saturday. We were taking a picture and this random kid came up and asked to be in our picture because she "likes being in pictures." Her mom kept apologizing, but we let her do it, so this is us with Makayla...and we don't have any clue who she is.

(I hate the way I look in this pic because I'm standing weird, but I love it because he's smiling a non-picture-face smile, and...Makayla...who I'm sure is awesome  and isn't afraid to ask for what she wants in life.)

The End

Friday, August 8, 2014

Fun and Frivolous



If someone gave you $50 with a note that said "Here's a little gift for you. For you. Not for any bills or for the kids or for anyone else. For YOU. Please use it to treat yourself to something that you wouldn't normally get/do... I know you are The Mom, but you are also Rebecca, and you need a little TLC from time to time. :-)" What would you spend it on?

I'm thinking booze and ice cream, but there have to be better options....so links please! If you had a fun fifty, what would you do with it?

(This is not some weird hypothetical. A generous friend really did give me $50 to spend on myself, and I really am stumped...so please help me play.)

**Update: Not to be outdone, another friend upped the ante. I now have $150 to spend on something fun. (I have nice friends!) Help me, internets! What would you splurge on?

Thursday, August 7, 2014

At Least She Didn't Say Conversion

It wasn't quite what we had hoped that it would be....Dr I was supposed to be our second opinion. She was sold to us as a brilliant physician who, while a little brusque, was extremely competent. She was meant to be unbiased by the chicanery of Dallas Children's Hospital....but she wasn't.

We started off with her chipper medical student assistant. She spent around 45 minutes examining Ella, and another half hour taking down her medical history. She asked us if we'd had the MRI she saw had been ordered, and if there had been an a EMG performed. When I said that they had been done, she asked to know where because she didn't have any record of them or results in Ella's records.

The Medical Student didn't ask as many questions as I'd have expected, but I chalked that up her youth and inexperience. She was friendly, even if she was a tiny bit unsure of what she was doing. Then, she stepped into the hall, and we heard her in conversation with a woman whom I assumed was Dr I. 

When she reappeared, it was with a Germanic-looking woman whose stern expression was unsettling. There was no warmth or friendliness in her gaze as she began examining Ella in the shortest, most perfunctory neurological exam I've ever seen. In fewer than five minutes, she seemed to have made a decision about my daughter's fate. She stepped away from the exam table, and fixed us with her gaze.

"Alright," she stated, "I've looked over the other physicians' notes and the test results, and they are all normal. There is nothing neurological wrong with her, so what is it that you want me to do?"

My mind raced as my jaw dropped open. How had she reviewed the test results she didn't have? Why had she read the records when she was supposed to be unbiased? Her diagnosis had been set before she even walked into the room. Why had she wasted our time?

"We want to know why she can't walk, and whether or not it's going to spread," I gulped uncertainly.

"I don't know what else I could possibly test that hasn't already been done. There's nothing neurologically wrong that I can see. She's completely healthy. All that she needs is intense physical therapy."

My mind raced and I stammered "...what about her toes that don't wrinkle? Her legs that are cold and hairless? What about the lack of sensation even when she's asleep? The neurophyschologist said that it was her para.."

"You don't need to worry about that." She  interrupted me, and with finality said, "She needs intense physical therapy every day and she will get better. That's it."

And with that she walked abruptly from the room.

Ella reached up and touched my arm as she said, "Let's go to the car mom, so that no one can see you when you start to cry."



I've spent all day coming up with the things I wish I would have asked: 
She's been in physical therapy three times a week since this began, and still declined. Why will it make a difference now..

If this helps her, we will be the most ecstatic of parents. If it doesn't, what's our next move?

How long should we wait before we know whether or not it's helping?

Why don't the signs of autonomic nervous system damage matter? What caused them?

Why aren't her poor circulation signs important? What caused them?

Even if physical therapy heals her, why caused this? What's to stop it from returning?

What was the point of examining Ella if you'd already made up your mind from the notes of other doctors?

How did you review test results that you didn't have?



And a thousand others...


So there you have it. She did everything but say Conversion. Only the finding of three psychiatric professionals stopped her from using that word, but it was clearly understood.

It would seem that all we've needed since April was good physical therapy. Who knew? (I'm now going to go whack my head against a wall.)


Thank you all for your prayers and support. I'm sorry to not have happier things to report.




Wednesday, August 6, 2014

Dreading The Morning

Here it is nearly 11:00 and I'm still not sleeping. I have to be up at 5:30, but I can't stop my mind long enough for sleep to find me.

Tomorrow morning is the neuromuscular specialist, Dr I. There is no anticipation of help, only dread. I'm afraid of hearing Conversion even with proof otherwise. When has a neurologist listened to us? When have they investigated except to prove their colleague's theories, reverse engineering until they arrive where they want to be? There once was a time that we hoped and prayed for doctors to find nothing wrong, but a mere four months later and we're praying that they do. Please to find, to acknowledge, to see....please can she see the things that we see? Can she, if not name them, say that they exist? I don't know where we go from this point if she doesn't. It is a dead end, a box from which I don't see an escape.

And then too, our eldest is leaving. The tiny girl we once held and marveled that she was ours...and she'll be gone. She has packed her possessions up, and they stand in our garage neat stacks, ready to be moved to her apartment. Her apartment. That just feels so wrong. How is it already time for our house to be no longer her home? I am not ready for this.

I had plans for this last summer. There were things we were to have done, and smiles and laughter...and they were overrun by the drama of Ella's legs. So much has been lost to this march toward answers. Time doesn't stop because life spins past it, and now she's grown. I worry about how our family will function once the children lose their captain. She has been their mother hen and the director of fun for the whole of their lives. She is their role model, keeper of secrets, and amazing big sister; and they are already crying at the thought of her departure.

It is right and good that she should grow up and become a woman on her own. We didn't raise her to be a woman who was dependent and clinging....and she's not. She's strong and determined, and such a source of joy for out whole family, that tomorrow night's prayers will ache without her.

So I'm dreading the morning and the day it will bring with it, the morning for fear and the rest for sorrow. It will be a day of tears and pride, a demented mix of wistfulness and the inevitability of growing up. I can only pray for the calm and peace in the eye of the storm and to be carried safely through to the other side.

Let's not let it all go to waste, shall we? Please let me offer it up for you, just tell me if you need prayers today.

Monday, August 4, 2014

It's About Time!

If you're anything like me, you're tired of the portrayal of fathers as stupid, inept, angry nincompoops. I don't know when we went from Bill Cosby to....most of the men on television today. I hate the message it sends to my sons about how unimportant they're going to grow up to be. I hate the message it sends to my daughters that fathers for their kids might be more trouble than they're worth. I hate the message it sends to my husband about how little society appreciates the things he does for our family.

That's a lot of hate, y'all.

Which leads me to my pleasant surprise of the morning. General Mills is running this ad in Canada right now, and it's all about the awesomeness of Dad! I just sent them an email thanking them for supporting fathers and families, and practically begged them to show the same kinds of commercials in the US of A. (okay...I did beg them...there was no practically about it.) In fact, peanut butter cheerios sound completely disgusting to me and my children, but I just might buy a box anyway. Anything I can do to show a little love to the coolness of Dads!

Saturday, August 2, 2014

From the Rheumatologist's Office

We saw Ella's rheumatologist, Dr G, last Tuesday. I've struggled since then with what to write about that visit. It's not that there was anything bad or negative about the visit itself, it's that Ella has become an expert googler. She can now research with the best of us, and it makes me have to choose my words more carefully. A test, word, or phrase that my readers wouldn't notice, sends her on a rabbit chase that ends when she understands every potential meaning of what was said. 

I'm glad that she does. When she is a grown woman, untangling this medical maze will fall to her, and she will need to be ready. On the other hand, she's 10 and not great at filtering out the things which don't apply to her situation. 

With that in mind, here's my purposely vague update:

We were relieved to see that her rheumatologist had returned from maternity leave. There is nothing quite as comforting as a familiar face or the gentle smile of an expert who already thinks we're good parents. We didn't have to prove our worthiness or intelligence before she would listen to us, she jumped right in with the proper medical terminology which has become so familiar that I find it reassuring.

I showed her the pictures of non-wrinkling toes, and mentioned the cold hairlessness of her legs. Dr G nodded in agreement that these things seemed to be significant.

After a moment of deep thought, she said, "I don't know anything about the non-wrinkling toes. I'm not a neurologist. It's weird, and my fast google search in the back says involuntary nervous system damage, but you already know that from your own research."

She turned to her medical student assistant and quipped that when you have smart, resourceful parents you save time by listening to what they've found. "I've seen more parents correctly diagnose weird conditions than I've seen doctors do it. Parents don't know enough to stop at normal."

She read carefully through the same timeline of disease that I've posted on this blog before saying "Here's what we're going to do. Children's in Dallas has a new neuromuscular specialist that we stole from Mayo. You need to see her by the middle of August. Don't worry, I'll put you in her schedule myself. I'm not going to play 'hunt and peck', we're simply going to run blood tests for every autoimmune disease we can check for that way. I've never seen one that looks like this, but that means nothing.  I'm going to order a genetic screening for the seven inherited conditions which come with fevers. After that, you'll be seeing the geneticist, who is also at Children's, within the month. I'll make that appointment for you too."

The mention of Children's Hospital in Dallas filled me with dread, and she saw it on my face. She smiled serenely and held up a hand. "I know you have had issues with Children's in the past, but that's over. This time you have physical proof, and...my name on the top of your papers. This is about to be a whole new experience for you."


And that, beloved readers, is how a real doctor gets things done.