testing, testing…

We have had a difficult few months, and I haven’t felt much like blogging.  We were on top of the world:  I had just started a job that I absolutely love, and E was having so much fun at daycare.  Then she had a series of illnesses in a row, followed by a some distressing symptoms and a change in “phenotype” (ahhh, medical lingo). Her doctor even referred to it as “alarming” (thanks for the calming words, doc ) 

I will save you the suspense.  She is currently on medication and after a medication allergy and trip to the ER, it seems that she is responding well at the moment.  She has even been cleared to attend an upcoming out-of-province medical appointment. 

But even though her doctors have kicked in to high gear over this latest development, we are staring down a series of new tests, with still no diagnosis in sight, after years of test after test. 

And then, just when I needed it most this popped in to my inbox.  This is why I blog.  I don’t know if anyone reads it, but I gather so much support and strength from reading what other moms have written I feel like I should share as well.  Just in case there’s someone else out there in a similar situation who might need to know that they’re not alone.  Thanks Carrie’s mom <3

Plus, I couldn’t have said it better, replace Carrie with E and these would be my thoughts exactly: 

I’ve become so grateful for all the little things. Carrie is kind in a way I’ve never seen in a child. Kids grow up too fast and because of her delays, I get to hold on to my baby Carrie just a little bit longer. We fight so much harder for each of her accomplishments so we get to appreciate all of her changes more than if they came easily to her. This house is like cheer leading camp with all the dances and celebration we do for each of my girl’s milestones.

i think there’s something about debbie too

This is what I think everyone should watch when they want to complain about what life has thrown them.  I didn’t know Earl, and don’t know Debbie, but I first heard about their story  through a member of their family, and have never been so inspired. 

If I could be only 1/10th the person Debbie and Earl are/were, I would be happy. 

“It works both ways.” 

“If I can beat this, you guys can win one hockey game.” 

http://www.cbc.ca/thenational/blog/2011/03/theres-something-about-earl.html

http://www.cbc.ca/news/canada/manitoba/story/2011/09/18/winnipeg-earl-cook-hockey-obit.html

What Not to Expect: Part II

Well, it looks like I have found a little bit more time today, so I thought it was time to put pen to paper (or should that be fingers to keyboard?) and do something constructive while I get my weekly dose of Grey’s Anatomy. 

It’s been a couple of years now since I tossed out our copies of “What to Expect” and officially stopped worrying about what E SHOULD be doing and instead turned my attention to what she IS doing.  And the past couple of months in particular have brought many exciting milestones that are all her own.  For some reason, the one that has warmed my heart the most is ”climbing up on to the couch.”   Now, she has been climbing up on the couch for a while (a souvenir of which is the trip to the emergency room we took in June) but this is different.  Recently, she now climbs up and sits down nicely with her back straight and her little feet near the edge.  She often then picks up a book and starts reading, or just looks over at me with the proudest toothy smile you have ever seen and enjoys the simple act of sitting. 

Last night brought another new milestone.  I was in the kitchen preparing lunches with one ear on The View.  I peeked in to the living room to see that E had abandoned her books and was standing precariously on the edge of an ottoman trying to plant a kiss squarely on Bill O’Reilly’s face as he bantered back and forth with the ladies on TV.  (I am not sure exactly which part of that situation was more frightening:  my daughter on that dangerous perch, or that she had gone to such great lengths to kiss Bill O’Reilly.)  

So are these the same things that most parents of 3.5 year olds are celebrating?  Probably not.  But the great thing is, I have absolutely NO idea what milestones most other 3.5 year olds are meeting.  I have completely lost track of worrying about what any other kids are doing, and writing our own list of milestones as we go is so much more fun.

amen!

I wish I had more time to blog, alas I have way too much to say and not enough time to say it.  I am typing this with one hand, as I am spinning E around in the office chair (a favourite game of hers.)

So instead here is something I couldn’t have said any better:

http://www.parents.com/blogs/to-the-max/2011/09/29/uncategorized/why-yes-families-of-kids-with-special-needs-can-be-happy/

breaking down

It’s probably just hormones, but today has me in tears.

I accidently sent my daughter to daycare today with a packaged cookie (her favourite) that unbeknownst to me “may contain traces of nuts.”

And suddenly I am, for the first time, questioning my ability to be a real parent. My immediate thought was, “Who was I to think that I could be a mom? A REAL mom.” I feel like a fraud. Someone who’s been masquerading as a parent over the past few years and can’t even figure out how to pack a simple school-friendly nut-free lunch.

In the past 3 1/2 years I have been through classes, appointments, tests, playdates, therapies, birthday parties, and never felt like this before. And all it took was one little cookie to make me question my every parenting ability.

But like I said before, it might just be hormones. I ran to the corner shop for a quick something, and was in line behind a gentleman in a “canadian tuxedo.**” For some incredibly bizarre reason seeing his get-up also triggered more tears, so perhaps it wasn’t the cookie after all. Perhaps I just need a glass of wine, some chocolate, and sleep. It’s been a long week. Traces of nuts indeed.

**What is a canadian tuxedo you ask? Well, let me google that for you. 

inclusion

An interesting read.  (Can you tell that I have this whole daycare thing on the brain?)

http://www.todaysparent.com/lifeasparent/article.jsp?content=1149138&page=1

letting go

This was exactly what I needed to read today. My stomach is tied up in so many knots over E starting daycare next week. Even if she will have her own one-on-one support. So I decided to take time out of my washing floors to post this link (you’re welcome.)

http://www.psychologytoday.com/blog/shut-about-your-perfect-kid/201109/loving-and-letting-go

bad blogger.

It was my New Year’s Resolution to blog.  At least once a week.  Since this resolution was made 9 months ago, and I have done absolutely nothing…I’d say it has been going about as well as my resolutions to lose weight, get healthy, and never smoke a stress cigarette again. 

So I will admit that I have been a bad blogger lately.  Maybe not even just lately, but really over the past couple of years since I ditched my old blog in favour of this, my “parenting” blog.  But lately I have to say that when I get to a computer, the last thing I want to do is sit around introspecting.  Over-analyzing my thoughts and feelings was great when there were only a few of them to dissect.  But lately I have often found myself so overwhelmed by what I think and feel that the prospect of stopping and analyzing it all is just too much.   So instead I do things like surf facebook. 

Things have changed a lot, and not that much at the same time.  We’re still doing the waiting game, while also living our lives.  In the past 18 months (18 months??  Wow. I suck.)  we really haven’t come any closer to a diagnosis.  And that can be a hard thing for a mom.  Probably more than back then even, I have come to terms with the idea that a constant state of searching may just be our medical reality.  And I would say that we have a pretty great reality in spite of that.   It is usually like a little bit of background noise that we learned to live with.  

While we still wait for a diagnosis, it’s becoming more apparent to people that something is different about our daughter.  I have no qualms about using the word different.  Because to me, different is really not an issue.  In fact, I think I’ve said before that if someone were to come to me and tell me that my daughter were “exactly just like everyone else” is the only time I’d ever be disappointed.  Because “just like everyone else,” or “like most people,” or that horrible word that I wish would disappear–NORMAL–doesn’t mean anything good to me.  I don’t want my daughter to be like most people.  Most people eat meat.  Most people believe in God (or A god).  Most people are polluting consumers with a disregard for where consumer goods originate and/or the impact they have on the environment/other people/animals.  I would not be disappointed at all if my daughter were unlike “most people.”   But this whole diagnosis waiting game becomes even more difficult when trying to answer a layperson’s question.  Without a diagnosis we also have no “name” that we can give to people to explain how E is different.  So that does add to a bit of the waiting stress as well. 

So instead of blogging, I do a lot of posting pictures on facebook.  Partly because I really enjoy sharing all of our happy moments with family, and partly because rather than sitting at night introspecting and blogging, I’d rather smile at photos and relive all the awesome times we have as a family.  And there are a lot of them   People who don’t know our situation  probably think I am absolutely photo crazy, and maybe I am.  But I am so proud of my little girl and want to celebrate every moment.

And then there are times when I realize that blogging may be what I really need to do.  Like when I get together with a good friend and suddenly vomit a steady stream of thoughts and feelings and stresses that I have repressed, unprocessed, until someone asked, “How are things?” So from here on out I plan to keep doing what I’ve been doing for the most part, which is living my life, enjoying every moment, and posting way too many photos on facebook.  And once a week, I will try to check in here and put some thoughts on screen so that I don’t feel the need to off-load everything I’m thinking on my friends and family. 

The Waiting Place

…headed, I fear, toward a most useless place. 

    The Waiting Place…

 

…for people just waiting. 

Waiting for a train to go

or a bus to come, or a plane to go

or the mail to come, or the rain to go

or the phone to ring, or the snow to snow

or waiting around for a Yes or a No

or waiting for their hair to grow.

Everyone is just waiting.

 

The last time we left the Children’s Hospital I cried. 

 

My daughter is gorgeous and is continuing to progress at her own speed which is an incredibly wonderful thing.  But her doctors are still working to figure out what is causing her to develop at her own pace rather than following a “typical” path. 

 

As advanced as modern medicine is, I am beginning to learn that finding a diagnosis is rarely as simple as it looks on TV.  Without blathering on about specifics, there are tests to diagnose some things, and other things are found by ruling everything else out.  At this time my daughter’s doctors are in the process of “ruling everything else out”, as the first round of diagnostic tests failed to provide any conclusions. 

 

I was under the misconception that the last appointment we attended would be the last.  I thought that it was a formality–where test results would be revealed and my daughter would finally be given a diagnosis and we would be able to move on with the rest of our lives without wondering what was going to happen next. 

 

Instead, what we were told was that my daughter is potentially facing round after round of tests.  Those tests are to rule out any number of genetic or metabolic disorders.  And of course, being an OCD mom, I’ve googled every last one of them, and some of them are scary things.  So my hopes were dashed, and feeling like there was nothing else to do–I cried. 

 

And then as we were leaving the hospital I noticed a pair of parents with a small baby, and the mom was bawling.  It snapped me back to reality.  Here I am crying about the prospect of bad news somewhere down the line, and this mother may have just received bad–or even the worst–news a mother can.  Here is someone who quite possibly has something real to cry about, instead of just crying about the unknown like I am.   

 

And usually that’s enough to keep me grounded these days.  To remind myself that the unknown is nothing to cry about.  And then there are other days.  I had a few of them this week.  Where I read my daughter a bedtime story and I burst into tears.  Because they are testing my special little peanut for scary things.  Diseases and disorders that don’t just make a life more difficult–but ones that make it shorter, or end it altogether.  And sometimes all that waiting and worrying is hard on a Mommy’s heart. 

 

My husband always reminds me that no matter what the final diagnosis is we will deal with it.  It will just involve changing our expectations and schemas.  But we can still have happy day after happy day, no matter what.  And for the most part any tears are dashed by looking into that gorgeous little smiling girly face. 

 

So tonight I think I’ll end the evening with a much overdo trip back to Harry’s Blog, a few glasses of wine and another viewing of 99 Balloons.  And for once in my life stop worrying about the things I can’t control, and instead concerning myself with the ones I can. 

 

Here’s to tomorrow being full of toothy toddler grins and belly laughs  

 

NO!

That’s not for you!

 

Somehow you’ll escape

all that waiting and staying

You’ll find the bright places

where Boom Bands are playing. 

 

With banner flip-flapping, 

once more you’ll ride high! 

Ready for anything under the sky.

Ready because you’re that kind of a guy!

–Oh, the Places You’ll Go!  Dr. Seuss

Vegan before 6?

So with the exception of a three-year time period during which I reverted back to eating white chicken meat, I have been a vegetarian since about the age of 16.  At the time, it wasn’t a political statement, and it had nothing to do with ethics.  It was simply a response to my mother who proclaimed, “You can’t eat ONLY white chicken meat.  Either you eat meat or you don’t.”  (Have I ever mentioned that my mom is the queen of arbitrary rules?)  “Fine,” I replied, “I’m a vegetarian then.  I don’t eat ANY meat.” 

The truth is I’ve just never liked the stuff.  One of my earliest memories is being forced to eat pork chops (blargh) out of a Tupperware bowl while I gagged.   We were a ‘clean your plate’ kind of family.   

I once had a boss who said, “Well, everyone would be a vegetarian if they really THOUGHT about it.”  As he turned off his brain and scarfed down a Whopper.  It wasn’t until I got older (read:  started listening to Propagandhi) and moved in with a vegetarian that I started to really THINK about the things I was eating.  And I challenge any person to really THINK about it and choke down a piece of meat.  If you can do that, then think you’re both a sick individual, and born to eat meat. 

And lately, as I begin to think more and more about the other things I eat, I have really begun to contemplate veganism.  Now don’t get me wrong.  I LOVE dairy products.  Most everything on my Top 10 List of foods contains some form of dairy.  And if I were able to obtain all of my dairy products from a cow who spends her days roaming around a big farm yard eating grass and gets milked once a day, I probably wouldn’t even be having this thought.  I’m not necessarily of the belief that I shouldn’t manipulate an animal in any way for my own benefit.  If she’s not getting hurt (or incredibly put out) in the process, I’m cool with that. 

But what the dairy industry has evolved into is what really bothers me.  I can’t in good conscience think about Bessie strapped up to all those machines, living her days out in confinement, and feel good about that pizza I’m about to ram down my gullet.  Still disagree?  Look up mastitis.  (Actually, scratch that, look up ‘mastitis in cows’.)  In addition to just how disgusting it looks, I’m sure most nursing mothers could share horror stories about how bad it feels, too.

So why not just dive right in to the world of soy products?  One can get soy anything nowadays, from cheese to milk to meat.  I already do the soy milk and occasional soy meat products, but I’ve been a bit reluctant to dive right in because I have an under-active thyroid (and an invisible to the naked eye but visible to an endocrinologist goiter.)  And a quick google of ‘soy+thyroid’ is enough to make anyone a bit paranoid.   Nevermind an already paranoid OCD googler. 

Alas, I’m also afraid of just going cold turkey.  I’ve done that before—with cigarettes.  And booze.  Neither one worked out so well.  I’m nearly certain that I’ll relapse.  Instead, I have been thinking about a way to ease myself in. 

But how to ease oneself into veganism? 

And then I heard the words “Vegan before 6.”  Before I even googled it, I decided “that’s what I’m  going to do!”  As a first step towards my eventual goal which is total veganism until such time as I can find dairy products that fit within my scope of ethics, at which time I’ll revert back to just veggie.  I feel like by going vegan by day/veggie by night, I can wean dairy out of my diet slowly (starting by cutting the cream out of the morning coffee) and start to get my body used to a vegan diet. 

Then I decided to google it.  Basically, it’s pretty well self-explanatory.  A writer named Mark Bittman came up with the idea of eating a vegan diet before 6pm , and then whatever he wants after 6.  If you need more explanation see here: 

http://www.rd.com/living-healthy/simple-till-six-weight-loss-diet-an-eating-plan-for-busy-people/article109150.html

But, I also knew that this was probably not something most vegans would look kindly upon.  For the most part (and I’m generalizing here) they seem to be an all-or-nothing bunch.  Either you’re vegan, or you’re against us.  Vegetarian shmegetarian.   Here’s sort of an argument against:  http://veggiedietitian.blogspot.com/2009/07/vegan-before-six-did-mark-bittman-help.html

So essentially I’m stealing Mark Bittman’s idea, tweaking it to my own life, and trying to dissociate myself from the guy.  So for now, on the hierarchy of righteousness, I’d like to place myself somewhere above vegetarian, and somewhere below vegan.