Thursday, April 15, 2010

Picking up the pieces

A little less than a week ago, I went to make Phoebe a grilled cheese sandwich using the extra fancy Cuisinart griddler thing we got as a wedding present and have used - maybe - 10 times since we got married.

It's high on the shelf and next to other rarely-used items, and when I went to pull it off, I knocked over my 2 pieces of Jadite (an egg cup and saucer for said egg cup) and both shattered all over the kitchen floor.

Phoebe was nearby and so was Geoff and while we both distracted her, Geoff picked up the larger chunks and I swept very meticulously and we thought we had gotten everything in order so I went about the business of making the sandwich while Geoff went about the business of playing Mafia Wars on Facebook.

When I picked Phoebe up to put her in her high chair, I noticed blood on the clothes of her Cabbage Patch kid.  I looked at her feet (nothing) and then her hands, and on her left hand I saw a sore with a lot of blood coming out.

She didn't seem to notice.  I looked at the sore for glass and didn't see any so we put a band-aid on her and told her -- repeatedly -- how pretty it was so she wouldn't try to take it off.

Geoff immediately got out the vacuum cleaner and vacuumed the kitchen floor and we hoped we'd gotten the rest of it.

But you know, glass always gets everywhere and only soft tissue can pick up the small pieces that the brooms and mops and vacuums leave behind.

And while I'm thinking about it, someone should invent a foot mop to rub over the floor after glass breaks.

A few weeks (months? what day is it?) ago we took Phoebe to a pediatric neurologist to see if she could diagnose any reason for Phoebe's severe developmental delay.

Severe. Developmental. Delay.

I'm still getting used to saying it.  Because no matter how proud we are of her achievements of late, she is still very far behind where she "should" be.  So far behind that we're past the point of "Oh every kid develops differently so who can say there's a place they 'should be'" and into the realm of "If one more goddamned person tells me that their nephew/sister/cousin/child didn't talk until s/he was 3 years old and s/he is JUST FINE, I'm going to fucking scream" because people, it's not just that she's not talking, okay?  It's more than that.  She's 22 months old and BARELY walking now.  Barely.

And trying to relate ... it's just not helpful.  It's discouraging, really.

The pediatric neurologist asked me a bunch of questions about Phoebe, including if we had any genetic disorders in either of our families (um, alcoholism and depression ... but not at the same time or same side of the family ... does that count? no.) and started drawing up one of those XX XY charts like we used to do in high school biology to determine, you know, the liklihood that a baby born to a mother with brown eyes and a dad with blue eyes would have blue eyes.

She then told me -- in so many words -- that Phoebe is "unusual looking" and had "unique facial features".  Geoff had another appointment that morning (we had been rescheduled last minute and were thankful in the bump up of the appointment) so I couldn't just point to him and go "How about that guy? She's about as unusual looking as that guy, am I right?" and she just gave me a gas face and told me that her facial features could be indicative of a genetic disorder.

What?

And she wrote down the order of the things she was recommending:

-blood work
-hearing test
-sedated MRI

Getting the blood work done was a major debacle mostly because Phoebe weighs 20 lbs (22 last time I got her on the scale -- so yay for small victories!) and her veins are teeny.  It took several trips to 2 different blood labs to get all the blood necessary.

I didn't really dwell on the things she was testing for, until I consulted Dr. Internet and saw that one of the syndromes the doctor was testing for, called Williams Syndrome, sounded an awful lot like our baby.

The pediatric neurologist told me the results could take weeks to get back from the labs and so we decided not to say anything to anyone about it because, well, it's our business and I hate gossipers (well, at my expense) and I didn't want that look of pity that accompanies bad or worrisome news.

Mostly I imagined my grandmother telling all her friends about her "disabled" great granddaughter and how it was because I insisted on drinking water during labor and no episiotomy.

And people wonder why I don't want anyone except Geoff and our doula with me in the delivery room when I'm in labor.

In any event, I did a lot of research about Williams because I just knew in my heart this had to be the diagnosis.  Even Phoebe's early start coordinator nodded in agreement when we talked about it.

I resigned myself to mourn the loss of the normal child I had until that point and to consider the course of the rest of our lives.  I tried to be optimistic, but felt this deep sadness over what wasn't going to be.

I don't think you can understand this unless you have a special needs child.

I connected with a mom whose son has Williams Syndrome and her blog is absolutely amazing.  Absolutely. Amazing.  We emailed and bonded in those days and weeks when I was waiting to hear results of the tests (with the results being the thing I already knew) and in those days and weeks, I tried to act normal, but really just wanted a margarita, and the constant moving of this new baby was just a painful reminder that Phoebe was different.

And the waiting reached an apex where I couldn't stand it any longer so I called the neurologist to see if they'd gotten ANY results yet.

And they did.

And the tests all came back normal.

I asked for copies to be sent to me and so I read them and saw for myself the tests were all normal.  All of them.

Her blood and her DNA and chromosomes and genes and all that stuff -- okay.

The results did say that a more detailed test for the specific syndrome is recommended if the patient has markers, but at this point the neurologist told us that she's recommending first the MRI and the hearing test and then a visit to a genetic counselor at either Stanford or UCLA.

The hearing test is scheduled for May 14th (I am available all day, every day, and this was the soonest they could get us in).

I don't believe she has a hearing problem as she follows commands, she hates loud noises, she hears the dog jump off the bed upstairs and she is absolutely obsessed with music of any kind.  But it's a hoop so we're going to jump through it.

A few weeks after getting the bloodwork results, I took Phoebe to Bakersfield to spend the day with my friend and her twin sons who are 6 days younger than Phoebe.  By the end of the playdate, Phoebe was taking several steps independently.  She just stood herself up off the ground and followed the boys around as if she'd been doing it forever.  Falling.  Getting up.  Walking.  Repeat.

And since that time, she's gradually started walking more and crawling less so that -- now that I think about it -- she hasn't crawled in a long time.  At least a day or two.

She still doesn't have any words and barely babbles, and she doesn't seem to be bothered by it.  She isn't frustrated that she can't talk, she just signs and points and grunts and we figure it out and go about our lives.

The problem with having a "special needs" child is I feel like every single activity in our lives must be therapy.  I can't help it.  I watch her eating Cheerios and think "Oh wow she's really getting good at the pincer grasp" and "Ohhh she's squatting to play now! That's a really good developmental milestone!" and it's not just ... interaction, it's always -- always -- work.  And I feel guilty if so much as a moment of her waking life goes by and we're not encouraging oral motor skills, or fine motor skills, or teaching her new signs.

It's a heavy burden, not lightened one bit by the progress we've made so far.

A woman at the grocery store a few weeks ago complimented me on how much I was talking to Phoebe.  I smiled and thanked her and mentally rolled my eyes and thought "Lady you have no idea".

I guess not many people do.

So for now, we're waiting for the hearing test and then the MRI (which will have to take place in Santa Barbara because no place locally will do a sedated MRI for a child ... thank you, anesthesiologists of SLO county) and we'll just have to see.

But in the meantime, we continue our weekly therapy and try like mad to get her to make any sound at all and encourage the stacking of blocks (she applauds each time she stacks one) and the taking of steps.

Today while Phoebe and I were playing in the living room with her blocks, I noticed a small piece of green glass on the floor and picked it up before she could step on it.

Seeing that piece reminded me of how far we've come from the panic of having a lot of shattered glass all over the kitchen floor.   

And I really really hope that's the last piece we're going to find.

Because I don't think I can handle any more unexpected hurts happening in our house.

3 comments:

Jocelyn said...

theraputic. blog away-I will read.

Nancy said...

Bawling. I am so very sorry you are going through all of this. I understand a lot of how this feels...and yet we had an answer after some months of wondering. Waiting is just the worst. I have come to adore you and your family. With your sense of humor, I have no doubt you are going to be just fine, girlie. Lean on me anytime. I mean that.

Dawn Low said...

I found your blog through Nancy P. Your comments about everything being therapy is so spot on. Last Christmas I went into a local toy shop-- one of those independently owned places that looks like something you see in movies with all kinds of educational and specialty toys you can't find at Toys R Us. I left an hour later completely depressed with nothing because everything that was "age-appropriate" for my son (age 3, Williams Syndrome) required fine motor ability or imaginative play. As I looked at every toy I considered how it would help his fine motor skills, his speech, etc. I couldn't just pick something up for my boy because it looked fun. I went back to my car and cried.

Keep having those playdates although no doubt it is difficult for you to see how far behind your daughter is. I know my son tries more when he wants to join in the play of the other kids. I hope you find some answers soon.