Monday, September 27, 2010

The SQUIRREL! in my head: brain injury, you can bite me. Oh, you did.

I started this post at the beginning of September. I have moved it forward in my drafts folder since September 1st. Getting this out is why I said I'd post all month, although I didn't. But even though I've not resolved all my issues, the load gets lighter day by day, just because I was going to tell you this. Aren't you effective little therapists, you!  You should be charging more.  Hey, those pants look great on you!

So, Hannah had a stroke. We thought she had anoxic brain damage as a result of her metabolic crash two days after her birth. To avoid the "MCADD babies can't be allowed to fast" issue, we waited until August 27 to get her MRI, and the findings are twofold: a stroke occurred sometime in the past, and also something akin to anoxic  brain injury but not looking very textbooky, so much so that the neurologist couldn't fully interpret it and referred me to the neuroradiologist who did the analysis. It is still freaking me out. Like the dogs in Up, and their immediate reaction upon even thinking of small furry bushy tailed chattering creatures, I find myself shrieking (only on the inside) STROKE!!!  My thoughts race from MY BABY HAD A STROKE (in all caps) to oh my God how can she be so cute! So determined! So smart! So joyful, and frankly, so pleased to be her. How can anything be bad with a child like that? STROKE! Did you see her just use her right hand? Watch her run! See her joy level? That kid is pleased with herself. STROKE!

I went on antidepressants approaching a year ago - my infant was diagnosed with cerebral palsy, I work full time, and getting her up and moving was taking a huge toll on me, and I couldn't keep my shit together at all. I hate to cry that much, and especially in front of either child as I hate to make either of them think they make me cry, and I hate crying anyway because it gives me incurable headaches and then I'm just not me.  I switched to a different antidepressant when I stopped nursing/pumping altogether and it is a better fit for me, and I am eternally grateful such things exist to push me through, besides my love of cheese and candy. Now that I finally got an MRI of my my baby's brain, and found out she had an actual stroke, I am back to the beginning of the grieving and the anger and I am now obsessively thinking all the time "wow, see her learn that new thing. STROKE!! "  This bouncing back and forth between thoughts of such extremes is wiping me out.  But look at her walking, running, using to learn her hand, MY BABY HAD A STROKE and on and on in a cycle of HORROR! JOY! HORROR! JOY! I feel like I might be getting a taste of the manic depressive lifestyle as my mind cycles wildly with "my life is better now than it's ever been" and MY BABY HAD A STROKE. Let's just say I am fond of Xanax, and glad I am no longer pumping and unable to take such a gift as a muscle relaxer.  Someone whose blog I like to read mentioned thinking of trying some therapy to deal with anxiety. I've never done therapy because I know if I talk about what is on my mind I will cry for an hour and get a whanging headache and I just can't see how it will help me. If my fellow blogger gets benefits from this, it will help me reconsider my position, maybe, but if I have now found four hours in a week to get to Jazzercise how could I possibly give those hours up for a crying headache, when instead, (turn on your inner Bee Gees soundtrack) "you should be dancing YEAH! Whatcha doin' on yer back?? Yeah-ah-ah Whatcha doin' on your back?? Yeah-ah-ah! You should be dancin', YEAH!!"

In my heart of hearts I think it is completely legitimate to feel cheated and angry and everything else. I feel many of these feelings because my daughter, my dear sweet daughter who only deserves the good in life, is afflicted with CP, the after effects of a stroke, and so on, and I am angry, jealous, overwhelmed and simultaneously filled with joy over every small accomplishment and blessed not to have lost her and frankly sometimes I feel completely whacked out because I am SO UP and SO DOWN at the same time. It is doing my head in. I think we have to forgive ourselves for these feelings we don't like, give them recognition and don't blame ourselves because feelings are feelings and you have to feel them, and you can't beat yourself up over it because you remember those feelings and cry at stoplights. And since I started this post, at the beginning of the month, even as I moved it forward and forward in the drafts folder, I have cried less, and felt more joy. WHOMP! upside my head, because that all makes so much sense.

Hannah is going through this amazing blossoming transitional phase as she now goes with the big babies, the twos, at day care and spends all day walking on the slidy shifty wood chip playground, and interacting now with the kids her age instead of the ones who were at the barely walking stage, and she is an absolute delight to behold. She understands everything I say, and while I was on the verge of doing a speech eval, but dreading having any more damn therapy, in the last two weeks she has said at least twenty new words, many of which she continues to use, and tried out sounds of others.  She'll say "Hi Mama!" (a two word sentence!!) or "Hi Dada" or "Hi doggie" and today said "thank you" to someone she doesn't even know particularly well.  Tonight she pointed to the fruit bowl and said apple and after we all shared an apple and the girls wanted Cheetos, I held out a Cheeto (natural Cheetos only, here) and said "say Cheeto, Hannah!" - she did and it was clear as a bell. I praised her and handed her a Cheeto and she said "thank you." She loves to use her right hand when I cue her to and have me praise her. She stuffs asparagus spears in her hand and waives them around for praise.  She gets all smiley and flirty, and when I'm not making her use her right hand she is still more two handed all the time, sometimes just to get me to praise her. She is amazing and then I get this neurological news - I've not actually met with the doc yet as she was off the whole next week, and when she had time for a short call, she told me the results were too complex for her to interpret and I should speak to the neuroradiologist. I think I will follow Jo's advice and just not call him.  This big damn bag of HIGHs and LOWs cycling in my head all day long is plenty of fun, I'm not sure I want an expert to give doom and gloom, when I can just work with my glorious daughter and enjoy her.  I'm kind of more manic and nervous than ever, trying to be uber special needs mom, and kind of my happiest ever to see my results with my girls. They are some effective little charmers. It is like a Hallmark special here all the time, what with the learning and giggle fits and the sister kisses and hugs, and the joy they show to be with each other.  Every time one kisses the other to cheer her up from some injury or pratfall I think my heart will burst with joy.  Even Hannah, despite all the selfishness of being two, will go hug Claire if she has fallen (but she wisely does not when it is obvious Claire is overreacting, which I find hysterical).  Claire, who is a very astute observer, has picked up on my cues and watches Hannah and praises her for using her right hand - very specifically -"Hannah, you put your necklace on using Righty!  Good job Hannah!"  And at least once a day, Claire tells me I am the best mom in town.  I think they like me!  Right now, they really like me!

I know it won't always be so blissful.  My wise big sister tells me the good gets better and the hard gets harder, and I know I'll be shattered when they start doing the things I did (Lord help us all) and Hannah won't necessarily escape some surgeries and procedures to keep her progress progressing, but just look at the videos I've posted here and tell me I shouldn't wear rose colored lenses.  And then, SQUIRREL.


Sunday, September 26, 2010

I dropped a bra size, I dropped a bra size!

You should read the subject line with a "neener neener" tone in your mind.

This may be one of those TMI posts for some, if so, just skip it.  I know CaryAnne will be proud of me, being an actual Weight Watchers employee and all, and everyone who loves me will just be pleased that if I can ever get ginormous to reduce to just plain big, well my neck and back will be a good deal happier.   Claire, who is skinny and bony and needs a good cushion, will likely disappointed because she likes me squashy, but there's a long way to go before I lose my cushiony qualities.

Talking with moms about our birth stories, our nursing or failure to nurse stories, our bodies post baby and all of that leave us with pretty much one conclusion: this shit is hard!  I've struggled with weight for a life time, had breasts since age 11, never knew what a training bra was, until my 13 year old friends got them, and generally wished for decades that I was less voluptuous.  I'd tell you about the time I nearly squashed a tata in the refrigerator door, but I don't know if all ya'll know me well enough to believe it.  That was when I was about 16.  When I was of a normal weight in college but well endowed, I ruined countless shirts not just by catching food but by setting them down on a dirty table or bar.  I had my babies late and much heavier, when my breasts had already begun their race to my lap.  Claire was so little at birth, she really lacked the muscle strength to nurse, so I pumped and she had an NG tube and every day, with the occupational therapists and lactation specialists, we practiced and practiced.  Long after I got her home, she finally got the hang of nursing without a breast shield, a certain Boppy at a certain angle, and someone, myself or a friend if one was nearby priming the nipple with drops of milk from a syringe of previously pumped milk.  We never got to full time nursing and I went back to work, having made sure my supply would always outstrip demand, I filled my sister's deep freeze and my own with bags of milk.  She nursed for nine months and gave up, I pumped for six more., and she had three more months of defrosted milk to tide her over.  My size dropped between nursing and the next pregnancy, as did my nipples themselves, so I expected it would happen the second time around.   Again, I got a hospital baby with an NG tube, pumped myself into a frenzy (no Katy, I was never that mother, I was the mother people took from) and again stockpiled milk while trying to teach a lazy baby to nurse, despite the relative ease of bottle feeding.  I lost thirty pounds in thirty days because of all the fun and illness right after Hannah's birth, and still the durned things got fluffier still.  This one quit nursing at four months, and because I felt guilt over Hannah's metabolic disorder and feeling she needed the best I could provide, I pumped until she was 18 months old.  I expected my nursies to shrink, again.  Nope.

I actually have an exercise bra in a cup size that shall remain nameless, since the letter is further through the alphabet than I thought possible for clothing sizes.  Meanwhile, my neck injury of 13 years ago has reared its ugly head, given the weight of the pump bottles, the nursing, the holding of 20+ pound people, the crawling on my hands and knees to help Hannah get crawling, and the fact that all lawyers/women/office workers tend to hold tension in their necks and shoulders.  I've taken a million pills, I went back to PT and got some new ideas, went back to Jazzercise (where I get a few of those backhanded compliments about how great I am at it, which I am sure come when it must surprise them to see a fat woman outdance them, and don't come from pure meanness) and although I haven't really cut calories as I should I have dropped a few pounds.

And blissfully, a bra size.  I nearly kissed the sales clerk who helped me today.  I bought two.  One cotton, one not.  I nearly boasted at a child's birthday party this evening but I managed to find some self control and shut my pie-hole.  But here I am, telling you!  The whole internet!  You couldn't call them tiny, but I am so pleased I'm going to now eat an entire Totino's pizza with extra cheese.  Heh-heh.

Saturday, September 25, 2010

Friday Haiku: Autumnal randomness

Glorious autumn
the search for some new brown shoes
still I bought the black

I've kitted the girls
in case the temps drop quickly
need to knit mittens

Apples are crisper
peaches are much more luscious
I'm dreaming of soups

Feeling such a rush
to enjoy summer's pleasures
before coming in

Wednesday, September 22, 2010

How Now, Butter Cow? Nearly Wordless Wednesday

Butter sculptures . . .

Pig racing . . .

A sea lion show, homemade fabric arts on display, funnel cake, Navajo tacos, fresh lemonade, and old style fudge and lollipops, a showing of the best of cocks and hens (poultry!!), plus a walk through the cattle barns to see Dairy cows with their "nursies" completed the outing. And a good time was had by all.

Monday, September 20, 2010

The shoes that keep on giving, the angel of PT, and why I blog anonymously

These shoes came to Utah from Virginia, courtesy of sweet Oia, who uses a right AFO and is a year older than Hannah. Don't they look cute? Hannah loves her new shoes - I think they are much lighter and more flexible than those we got with the AFO, and suddenly the size fives were just a little small. Voila! We broke out these, which were sent to us months ago by Mo, and just waiting for Hannah to fluff up and need them. I had to modify the strap on the left since at the time Oia wore these she had a left AFO too, but I started the job and stuffed the toe with cotton (Hannah stuffs it with wood chips every day at school) then where I messed up the strap I took it to Eric at Shriners' who fixed it up in three minutes with a cushiony strap on the bottom that takes up some of the extra room in the shoe, and we are off and flying. Mo, you did right by us! Maybe we can work out something where every now and then I buy you a new pair and you keep sending me your right AFO modified older sets? Now, got any snow boots? The Angel of PT says they way I keep Hannah going gangbusters in winter is to carve out snow steps and have her climb up to get to slide down.

Observe the shoes in action.

I think I've mentioned before that our most influential PT, the one who we met first when our CP journey began, who created the Bamboo Brace that I think has been enormously beneficial in Hannah's development, should properly be referred to as The Angel of PT. Not only does he work privately as a PT (how I got him), takes Early Intervention cases (he moved me to his caseload when another child aged out, saving me mucho dinero), runs the Spina Bifida clinic at the local pediatric hospital, and is a wheelchair fitting specialist, but he also works for Ability Found, a non profit organization bringing people and assistive equipment together. I mentioned to Michael that my mother was in poor health and having decided to stay in her home of 37 years, she needed two power chairs, one for each level of her house. He offered to see her and help determine what needs she had and what chair would best suit her and her environment, and that he could help her find a gently used chair at much less cost than a new piece of equipment, or if what they really wanted was not yet available he'd loan her a chair until he got he what she really wanted. Like many querulous old folk, she wanted help NOW and with him being busy (he is) and her being busy (being retired and old) he told her if she insisted that she had to see him on Thursday morning last week, he could only do so by bumping my Hannah's appointment. She didn't bat an eye and said yes, she'd take Hannah's slot. And she never called to thank me for giving up Hannah's spot so she could pursue her own needs.

You can be like Mo, who sends her daughter's shoes to a stranger from the Internet, you can be like the Angel of PT who runs himself ragged being all things to all people and making a huge difference in literally hundreds of people's lives, particularly for my family, or you can be my mom, whose needs are always the most important.

The video you see above is of Hannah, playing in the park in Oia's old shoes after our make up visit with Mike that he squeezed into his Friday schedule because he felt bad bumping Hannah for my batty old mother. He was too nice to say anything other than that he had a nice time meeting my parents. I said she was an old bat for not even feeling bad about bumping my baby's PT time. And that, my friends, is why I blog anonymously. I will be less bitter and annoyed later, but as Nanci Griffith sings "Maybe tomorrow, but not today!!"

Wednesday, September 15, 2010

Claire meets the milestones of deceit and manipulation

See this hair bow? The first time I asked where it came from she said her teacher gave it to her because she missed her when she moved to the next class up. The next day, when I asked where it was, she said she'd given it back to the girl who owned it, and went on to say she had said "you're welcome" when the girl thanked her for returning stolen property. To be fair, it probably was lost in the east playground, like many other treasures, but I suspect she knew all along who would want it back. Oddly enough, the wood chips in said playground do indeed give up treasure, as the lost detritus of hundreds of children periodically rises to the surface. I can stand the Princess rings she brings home but frankly the severed transformer arms, dirty hair clips, and random small wheels sort of bother me.

Claire's drawn figures now have faces.

Even when they are drawn upside down.

Meet Cleta.

Claire assures me Cleta is nice, although she may resemble a somewhat droll angel of death.

Tuesday, September 14, 2010

Tattoos for the Terrible Twos, like they need more attitude

If you squint you might see the remains of a pink and purple butterfly on Hannah's inner arm - tattooed on with airbrushed paint at the local street fair last weekend. The point of putting it on her inner arm is to inspire her to twist her arm to see it, because evidently supination is difficult for folks with her condition. The other idea is to use an interesting watch, worn on the inner arm, but we haven't gone far with that technique as no watch is small enough to put on Hannah and Claire keeps taking the watch we did get but have yet to find a pokey tool to size it down.

Now don't all go running off using this idea until you check out the paint. I did the tattoo on a whim, and although I would have liked it to last I was also secretly pleased that it came off in case it turned out to be melamine and BPA-laced made in China paint. I am a little gun shy about my "creative" therapy ideas after finding out that the receipts I'd been saving and using for about nine months to encourage opening and closing her hand were likely a bigger load of BPA than all the baby bottles we didn't use because I at least knew to avoid them. (Google BPA in receipts to get a gutful of data) The only bright spot in the great OT receipt fiasco at my house is that Starbucks typically has very low or no BPA so a lot of our receipts were clean. Ahem. My machiato addiction may be bleeding my checking account dry but at least it is not poisoning the baby. Yet.

Monday, September 13, 2010

Rocky, the man with the plan

Here he is in all his glory, the horse you've all been waiting for, the mover and shaker that has my baby moving and shaking.

Now enjoy seeing what working with Rocky has done for us. Remember this girl has hemiplegia - one side of the body affected by the cerebral palsy. Can you tell? This horse should be in the therapy hall of fame.

Sunday, September 12, 2010

Grace in Small Things

Many months ago I wrote a Grace in Small Things post about baby knees.

Little lamby girl now has little girl legs. NOT BABY LEGS. Yikes!

Saturday, September 11, 2010

What I meant to say was . . .

I joined "Bloggers Unite" which exists to raise consciousness about issues, having bloggers share their thoughts with others about things that matter, like the day for premature babies (check) or babies without shelter or Haiti or a million other things of consequence that deserve reflection. Whatever. I meant to get this up on September 8, a day to celebrate and encourage literacy, and I missed that, but today I'll dash this off, to tell you to thank your parents, teachers and all that is holy that you can read my words. Any words. Any words at all, because you have a gift that many lack, and a lifetime without literacy is a lifetime without books. Need I say more? Who cares, I will. I wouldn't be the woman I am today without the girls I read as a child -in Anne of Green Gables, the works of Laura Ingalls Wilder, the migrant farm workers' children in Lois Lenski's books, the depth and breadth of my understanding of people from all economic classes, in other periods of history, action in the face of adversity or learning how to love and be loved.

Last week, in court, I saw a man who wasn't given much in the way of gifts with which to start, and he may have squandered what he had with drugs and alcohol and poor choices. You might see him begging, or perhaps he is too proud to beg, but he lives off LDS Bishops' assistance, food stamps when not incarcerated, and a part time job at the local LDS charitable store that exists to teach job skills and self reliance skills to help folks get out into the workplace. He is over fifty, convicted of felonies, tattooed, and illiterate. Where exactly can he work, to pay the fines and restitution he owes? The court wondered had he any assets to pay the costs he caused to another. He has no upper teeth, why would he have material assets like a car? When asked if he was entitled to other benefits, VA or social security, admitted he was denied for disability and had probably never worked enough to pay in to the retirement option. He did two terms in the National Guard but was discharged when they realized he was illiterate, so it was proven he cheated to get in, so his discharge means no benefits whatsoever.

What might have made his life different, richer, more rewarding, and worth maintaining?

Literacy would have been a great start.

We can't take it for granted.

Friday, September 10, 2010

Haiku Friday: farewell, stealer of pies and hearts

Mr. Tobias
a dog with a joyful heart
left us yesterday

My best friend, bereft
sent him on to dog heaven
away from cancer.

He stole many hearts
he comforted and loved us
and stole our baked goods.

He knew how to love
better than many people.
His heart knew real joy.

We'll miss you, Toby.

Thursday, September 9, 2010

Is empty tub syndrome like empty nest syndrome? But more soggy?

So the other day Claire stayed at her friend's house for a sleepover. Her first ever. (I didn't think sleepovers started this early but this is a close friend) I was a little disturbed to have only one little one to chase, but she had no such hangups, no desire to talk to me on the phone to say goodnight, and was far more interested in hanging up and getting back to play, and so she did. No calls in the middle of the night, just a very tired preschooler the next day.

Hannah had her first bath alone since the days she was so small she was bathed in the sink.

She liked playing with Claire's bathtub Ariel Barbie, and said "Ariel" - thus proving she wants another Disney vacation. And when we said show us your bright clean teeth, she did this:

Tuesday, September 7, 2010

And then she waved goodbye

With her right hand. I hope if I write these things down it will burn forever in my mind's eye - as I never have the camera when Hallmark card moment comes calling. Claire and her Daddy and Hannah were walking out to the car to head to day care, and Hannah wanted to wave goodbye to me, but found her strong hand occupied with her juice cup, so she thought about stuffing her cup under her weak arm to free her hand to wave, and I called out "wave with Righty," and she did, and I clapped, and she smiled and all is almost right with the world. And when I got inside and called out my goodbyes, I cried again. Again! Right with the world would be she never had to work so hard to get there, but holy shit is that girl amazing me, every, every day. Jo, dear Jo, commented here - the MRI of Hannah's brain is not a map of her future. It doesn't say anything about her learning to wave goodbye or blow kisses with her right hand, or extraordinary flirting skills. On these points, that damn test is curiously silent.

Monday, September 6, 2010


Somtimes she explores on her own

Sometimes she likes to supervise

Sometimes she likes to mkae sure Daddy stays on task

Sometimes she just likes to run

Sunday, September 5, 2010

Grace in Small Things

1. Hannah grows stronger every day.
2. I need only wait about three more days to talk to the neurologist about the results of Hannah's MRI last week. I know it is worse than I thought it would be, and instead I just look at who Hannah is and what she is doing, but I will be glad to have this conversation and move on.
3. Temperature changes means I can dress the girls in new clothes!
4. I am pleased I have let this weekend's Gymboree sale slip right past me.
5. Claire can write her name, and mine.

Saturday, September 4, 2010

And then she pushed the other button in the elevator

Lately, as Hannah has experienced just an explosion of social behavior and skills she never possessed, and never flaunted before, she has now started to do things regular ol' babies do. I was sort of pleased when she started trying to get out of the car seat on her own during arrivals and departures. I was pleased she was taking initiative. Like reaching up to touch a pan on the stove! We had a perfect outcome, it was hot but not blistering and didn't cause any injury and she learned the word hot and has not been seen trying that again. These new skills also include using excessive flirtiness and smiles to get her way. She hits you if you anger her. She runs away when you call her, laughing maniacally. She can also do all of these things:

Copy big sister

Climb up on stuff

Not refuse to do things with her right hand (full disclosure, I stuck the ball in her hand, but her ability to keep or dump an object is vastly improved)

Weight bearing on her affected arm during play

And be wicked fast at doing things that Claire never did, like pushing the call button in the elevator at the Children's Museum, summoning staff to our aid in the blink of an eye.

Friday, September 3, 2010

Friday Haiku: The Real New Year

I have always felt
that autumn marks the new year
and new beginnings

I remember shoes
clothes that were too warm to wear
and all new school books

the hope I'd be new
and better at fitting in
having folks like me

it was more fun next
at college and then grad school
where I was then liked

Act predictably
and get the lay of the land
for the months to come

Pull out clothes to layer
Plan to do the winter chores
Goodbye to summer

Oh, each September
more new than the last winter
Spring ahead, fall back.

Thursday, September 2, 2010

Hannah's first recorded use of a remote control

Obviously if you are blessed with a child who is this appealing, posting daily is much, much easier.

I bought each girl a toy that is operated with a remote control, thinking it would encourage Hannah to use two thumbs to press the buttons simultaneously. I figured she'd watch Claire and try the same thing, but not so. She shrieked and carried on as though this sheep meant business, until tonight, when she finally grabbed the remote from her sister and gave it her all. My uncooperative camera missed the shots of her really trying to get her thumb on the button, but you see the intent and the interest. My heart swelled with pride, tears welled up in my eyes, and I realized I'll have to get her a Wii if I want to get her out of the daily crawl of the blanket tunnel.

Wednesday, September 1, 2010

Still Life with Laundry - minus the goose poo

In honor of how full my head is these days, I decided to join in NaBloPoMo (National Blog Posting Month) this month. I've made a commitment to post every day for a month. Think of it as a Roman vomitorium if you will, since my head is all spinny and full of stuff and it needs to come out, and now you get to see it, so maybe I'll see less of it myself. The theme of September for NaBloPoMo is Art. I don't think I'll really get in any trouble should I stray from the topic, but at least we'll begin that way. Art.

Still life with laundry. Notice the clean baby pants.

Susie homemaker tip of the day: if any of you let your toddler fall on a goose poo, simply place a plastic bag on the car seat to minimize seepage, and use Oxi-clean spray on the stain. Voila! Lord Honey and I had quite a dispute about whether or not we could wash Hannah's one and only pair of closed toed shoes, made by a manufacturer for use with orthotics, and Lord Honey's choice was to throw the shoe in the washer. I freaked about potentially ruining my best shoe option and the only one that can go to hippotherapy with a brace, and opted to hand wash the sole in the sink with Oxi-clean, figuring that poo is poo, and if I can wash baby poo, I can wash goose poo. It is, after all, organic. Lord Honey wondered why I let Hannah wander about the goose poo despite her penchant for sitting down without notice, but I thought it a good OT activity where I would stuff a large piece of bread in Righty and let her pull chunks off with Lefty. In my mind, I make every daily opportunity for two handedness something noteworthy. And since I now found out that one of my self created OT activities for Hannah, which involves saving all receipts and giving them to her to scrunch, toss, place on Mommy, and use to practice opening and closing her right hand, is now an activity worthy of OSHA scrutiny, since apparently most receipts contain high levels of BPA. So having removed BPA from every cheap plastic cup or bottle my girls drink out of, I have instead exposed them and jeopardized their future offspring by by encouraging their play with Mommy's little scrunchy papers. Arrgghh.

Enjoy the still life. More to come this month.