Wednesday, November 30, 2011

30 by 30 Update: Meet and Greet

Yeah!  Another item to check off the 30 before 30 list!  Actually, it's really the first thing that I can officially check off the list.  I still haven't used shampoo, but that can't be marked off until I get to February 23rd.  I'm working on my two memorization goals, the blog revamp (bought a domain name!), and I'm working on Aurelia's baby book.  But the first signed, sealed, delivered item to check off the list is #29: Meet Lisa Sorenson and family.

Lisa is one of the moms featured in my ongoing Hydro Mom interviews.  She's also one of the few hydro moms who lives on the West Coast.  It seems like the vast majority of families that are active in the online support community live on the east side of the country.  Well, Lisa and her family live on the east side of Washington State, less than a mile from the house Joey grew up in!  And we've tried to meet up before, but it seems like it never works out.  This weekend, we made it happen.

It was so nice to spend time with a family that speaks our "language."  I feel like most of our friends and family have done an amazing job at becoming conversational in hydrocephalus.  But there is something special about talking with someone who has heard all those big words spoken about their child, who knows what it feels like to get that initial, "Somethings wrong."  They know the lingo.  They've dealt with insurance companies.  They go to the same appointments.  And they watch as their little lady brings joy and enrichment to their lives.  And it is pretty incredible to share in the resolve that we will do whatever we can for these precious little kiddos.

It was also cute to watch Aurelia and Elisabeth play.  Aurelia is 15 months and Elisabeth is 4 years old, but they both score at around 6-7 months on the development charts.  It was like they saw eye to eye, or periphery vision to periphery vision.  They played with toys and had what I can only assume was a conversation about their shared love of pacifiers and playing with toys turned upside down.

We can't wait to spend more time with this lovely family.  Hopefully when Joey gets back from Toronto and when Elisabeth is feeling more like her smiley self.  We did get one great smile from her, despite a tough recovery from a recent surgery.  I hear she's on the mend and feeling much more like herself.  And we're thankful to know this sweet family.

Monday, November 28, 2011

Thanksgiving Recap

I love my family.

Aurelia and I headed to the Tri-Cities last Wednesday to spend Thanksgiving with my mom's three sisters and company.  I am so thankful for this crew.  These ladies make me feel close to Mom.  I love that my Aunt Judy always talks about how Mom was her best friend, how Aunt Janice and Aunt Karen talk about how much they miss her and what an amazing lady she was, how all three of them share her same smile.  I feel like when I'm with them, I get these glimpses of her through their laughs, their voices, their gestures.  It's not the real deal, but it is refreshing.

And I love that despite the years and many tears, this family has remained close and strong.  In fact, I know we've grown closer and stronger because of the difficult things we've been through.  This time of year is especially hard for the Anderson clan with two deaths around the holidays.  But we're still able to gather around the table (many times, it seems all we do is eat!), and enjoy good food, good laughs, great wine as we create more memories.  I am so blessed to be part of this family.

Table all set and ready for the big meal.

The Gilberts (check out their wine, and they have the best apples)
Cousin Ben playing with a very happy baby

Aunt Judy, Aunt Karen and 2/3 of the triplets making spirits bright

Cousin Sean taking Aurelia on a walk
Aunt Janice always makes this little lady smile

Tune in tomorrow for another installment of something to check off the list.

Tuesday, November 22, 2011

Getting Ready to Give Thanks

Aurelia and I are heading across the mountains tomorrow for some family time and Thanksgiving.  Hopefully the pass will be nice to us.  I know we'll come back with lots of silly stories.  Time with the Anderson side of our family is never short on good food, good laughs, and great reminders of why we have so much to be thankful for.  Plus, rumor has it they're renting a Karaoke machine.  I'm ready to sing some Journey.

Oh, and here's something I'm thankful for.  Aurelia started clapping her hands this week.  She's sticking to a 4-6 month postponed schedule for most cognitive things.  It's funny because she only does it when she's really excited.  I think it's a natural reaction.  AND we *think* she might have said her first word.  Guess what it was?

Monday, November 21, 2011

Breaking Dawn and the Mom Translator

I saw the new Twilight movie with some sisters this weekend, along with every 12-18 year old girl in America it seems.  But I didn't see it until Sunday, which means the theater was full of older women and tweens seeing it for the second (or third) time.

Let me go on the record right now and say that I am an unashamed fan of the Twilight Series.  Sure they're silly, sappy, a little strange, and sub-par writing.  I don't claim they should be added to the annals of great literature.  But sometimes it's nice to read something that is purely silly and sappy.  I read them when we lived in Kabul, covered in reality and dust.  Those books were a great escape.  And it's fun to revisit the story with friends who enjoyed them too.

It's also very fun to see a movie like that with the right demographic.  As a student told my brother-in-law (a high school math teacher), "This movie is WAY better than the last one.  In the last one Jacob doesn't take his shirt off until like the 20th minute.  In this one, he takes his shirt off in the first 15 seconds."  Oh teenagers.  And she was right, and it made the whole theater giggle.  And there were giggles at kisses, and sappy lines, and romantic rendezvous.

I'll admit our aisle did most of our giggling in response to the chatter of the tween crowd, and maybe some eye rolling too.  Kids these days.  I just don't get them.  I think I'm getting old.  It doesn't help that I always call Robert Pattinson, Roger Patterson (and I definitely just googled both those names to see which one was correct).  I'm on my way to needing one of these:

But, seriously, I feel like half my life is nursery rhyme and the other half is nursing home.  I love that having little kids gives me an excuse to eat dinner at 5:00 and be in my pjs by 7:30.  And I'm not even 30 yet!  It makes me so thankful for my husband who acts less his age and more my age (or younger).

So, here's to enjoying silly movies that make us giggle and feel a little young at heart!

Friday, November 18, 2011

30 by 30 Update: Shampoo

By far, the item on my 30 by 30 list that has gotten the most feedback is number 17: Not use shampoo.  The funny thing is that technically I can't cross it off my list until February 23 when I have my birthday.  But it has definitely sparked the most interest.  I've been asked things like, "Really!?!" or "What are you doing?" or "Why?"  But I've also gotten a lot of comments on how my hair looks great.

Here are the basics of what I am doing and why:

I have always had a strong dislike for shampoo and conditioner.  I've never found one that really suits my hair.  It either makes my hair too dry, too frizzy, too oily, too heavy, too fragrant, too flat, too blah.  Well, there was one shampoo/conditioner combo that I loved.  It was Aveda's Sap Moss (now called Dry Remedy) and at $42 a bottle, it seemed a little much. Disclaimer: When I used this shampoo I had a friend that worked at a salon and gave me free samples. 

So, my relationship with shampoo and conditioner was not difficult for me to end.  Honestly, I've always been an every other day shampooer.  And since Aurelia was born, I've really only washed my hair once or twice a week.  Another Disclaimer: Washing my hair twice a week does not mean I only shower twice a week.

I'd read a few other blogs that talked about the No 'Poo method and I even have a few friends that have tried it.  And being the person that I am, I decided to do some research.  What I found was that shampoo and conditioner have only been used daily (or even weekly) since the 1970s.  Before then, people just used soap a few times a month and water otherwise.  Not to get too into the theory of it all, but each time we use shampoo it strips our hair of it's natural oils.  This causes our scalps to produce more oil, necessitating more shampoo.  The imbalance of oil and overuse of detergents is what caused my constant battle with too dry, too frizzy, too oily, too etc.  And when you look at the ingredients in most shampoos and conditioners, there's actually a lot of potentially harmful stuff.  Let's throw in another disclaimer: I'm not trying to win any converts, I'm just explaining why I'm not using shampoo.

Research complete, decision's made, no more shampoo.  Now my hair washing routine is easy, basic, and cheap.  I wash my hair every two or three days with baking soda and apple cider vinegar.  The baking soda cleans, the apple cider vinegar moisturizes and detangles.  It seems like different people have different ratios that work for them.  My ratio for step 1 is 2 oz. baking soda mixed with 16 oz. water.  I probably use about 2 tablespoons of that mixture each shower.  For step 2 I use 2 tablespoons apple cider vinegar mixed with 2 cups of water and just squirt some on the ends of my hair.  And the end result is soft, manageable hair.  It doesn't smell like vinegar (or grease), it just smells like hair.  I've heard of some people using a little water with essential oil, but I haven't tried that yet.  I'm on week 3, and I love it.

One final disclaimer: When I get my hair cut, I suppose I'll let them shampoo my hair.  It's not like I'm going to request they use my homemade concoction at the salon.

OK, maybe one more disclaimer: We have TONS of little bottles of hotel shampoo and conditioner for when we have guests.  I won't make you go all hippy if you stay at our house.

And if you want to read more about other non shampooers, check Keeper of the Home or Simple Mom.

Thursday, November 17, 2011

With Flying Colors

Well, I passed the 3 hour test.  In fact, my glucose levels erred on the lower end if anything.  Learn from my mistakes. . . don't eat cereal and string cheese for lunch before a blood sugar test.

To celebrate I got a Peppermint Mocha and took a free Caramel Brulee Latte to my sister.  Thank you, Starbucks!

Tomorrow I'll update on how my 30 by 30 list is coming along.  I'm already knocking things off the list.

Wednesday, November 16, 2011

Fetal Hydrocephalus Dot Com

Still waiting on the official results from yesterday's glucose test.  While we wait, I have a VERY special hydro interview to share.  I hope you take the time to read it.

For many of us hydro parents, the first time we hear the word "hydrocephalus" is during a routine ultrasound.  As you've probably noticed in the hydro parent interviews, most of us leave the appointment feeling shocked, overwhelmed, and desperate for answers.  And where's the best place to look for quick answers?  Dr. Google.  Let me tell you, there is a lot of scary stuff out there on hydrocephalus.  But, thankfully, one of the first website that pops up in a search of "fetal hydrocephalus" is a website filled with quality information, practical tips, and lots of hope.  That website is, and today's interview is by it's creator, Michelle.  

It's hard to put the perfect descriptor to Michelle's role in the hydro community.  She's definitely a pioneer, a wealth of information, a leader, and a bit of a celebrity.  She's put a lot of time and energy into providing other hydro families with life changing information.  And she's also put a lot of effort into meeting other families and hearing their stories.  We haven't met yet, but I know we will someday.  And I am honored to feature her on my blog.  She writes about her fabulous family here.  And she's shared some of her story below:

Tell us about your family.  If your child has multiple diagnosis, feel free to share them.  We have two children.  Our oldest is our 9 year old daughter.  Owen is our youngest at 5 years old and he is the one with hydrocephalus.  He has aqueductal stenosis with a secondary Chiari.  He is deaf and has a cochlear implant.  He has seizures which keep him on meds and he has a Vagus Nerve Stimulator implanted for seizure control as well.  He cannot walk yet, though he can cruise on furniture and using a hand rail and he can crawl.  He only has about 2 verbal words and just a few signs. 

Tell us about the moment you were told your child had hydrocephalus.  We went in for a routine scan and they found that his ventricles were enlarged.  They rather foolishly told us the news right in front of our then year old daughter, so we couldn’t really fall apart then.  Once the doc was finished telling us and we were waiting for the amnio I had to have my husband take Sammy out of the room for a while so that I could lose it.  It was a rather rough day.

How has hydrocephalus affected your daily life?  Maybe give one "real life" example.  There is nothing that it hasn’t affected.  I have had to quit my job and I spend all day taking care of him.  He does no self care, so feeding, dressing, diapering, 10 therapies a week, etc take up all my time. 

Share a moment when you were frustrated or discouraged  Probably the worst was when they were wheeling him out at 1 day old for his shunt surgery and the nurse came in and stopped them and said his bloodwork had a problem and  they would have to put off the surgery for a few days.  More recently it would be watching him acquire about 13 words and a bunch of signs and then watching the seizures take them away.

Share a moment when you found joy or hope  Every time he giggles or hugs me.  Watching him hold onto the oven door and stand on his tiptoes to see onto the counter.  Every time we get even the tiniest progress towards a milestone it’s like we’ve just gone to Disneyland!

What do you do to keep your sanity?  How do you take a break?  The website has always been my biggest therapy.  Channeling what would otherwise be frustration into the energy to help educate and support others is the best way that I have found to stay sane.  I also knit, crochet and paint to give myself other outlets.  I highly recommend “yarn therapy” for all. 

What advice would you give to a family who has just received a new diagnosis of hydrocephalus?  Learn all you can, read the stories of other families, and then go on vacation.  Find other things to occupy your mind and time or you will go insane.  There isn’t anything you can do about it so just get on with things. 

How do you deal with difficult questions from onlookers?  Somewhere along the line I realized that I was smiling a lot more than I used to.  I was smiling at each and every person that walks past me, even when I’m in the hospital and having a really bad day.  I have found that it makes people feel more at ease.  It encourages them to ask questions, and I do want them to ask.  The worst thing is the quick look away that makes you realize that they are uncomfortable.  But a question means that they are curious, interested and wish to know something about my son.  I am not picky about how the question is worded.  I have only once had someone say something that was so obviously rude that I snapped back at them.  Everyone else has asked with kindness and caring.  The more open I am, the less that people will be afraid of what they don’t understand.  Even if they don’t ask a question, the smile tells them that it’s OK and there is nothing to be afraid of. 

What is one thing you wish families with typical situations realized about families dealing with special needs?  Just how all consuming it can be.  That we don’t get days off.  That the seizures can come 24 hours a day so we can’t just turn off the worry.  That you complaining about a bad day when your car won’t start probably won’t make the same impression on me that it would have before Owen.  If everyone is healthy then it isn’t a bad day. 

What is your dream getaway (either family, couple, or by yourself. . . or all three)?  Someplace I could sleep for as long as I wanted to without anyone waking me up J

What is your child's favorite toy/therapy tool?  His favorite toy is probably his bug book.  It’s a soft book that he’s had forever with bugs whose wings and antennae are sewed on pieces that he can play with.

What is your favorite coffee (or coffee alternative) drink?  Oregon Chai Tea Latte.  No question about it, I drink it every day. 

Your website on fetal hydrocephalus is one of the first stops many moms make on their google mania after receiving a diagnosis of hydrocephalus.  Why did you start the site?  When did you start it?  Any idea how many people have visited it?  And how many people have visited Duke because of it?   I started the site out of sheer frustration while I was pregnant with Owen.  I had been searching for information and I would find a tidbit here, a tidbit there and I would print out each bit.  I had a fairly large stack but it had taken me months of hard work to put together.  This was in the day before Facebook (can you believe that there was a time before Facebook?) and I couldn’t find anywhere to read actual stories of actual families.  I found one old fashioned list server where you could email questions and I had a few people answer back.  Only one was a Mom of a kid with congenital hydrocephalus.  She was great, and she even talked to me on the phone, but it was hard to get a real picture of daily life with hydrocephalus.

I had to stay on the couch quite a bit in the last few weeks of my pregnancy because of contractions, and I am not a person that can handle sitting still for long periods.  So, I channeled my frustration with how hard it had been to learn anything and with needing to be a couch potato into creating a website so that no one else would have to go through the hassle of finding out the most basic information.  It was great therapy for me.  The blog portion also served to keep my extended family and friends up to date on what was happening.  Before the blog we would have an appointment, which was devastating enough, and then we’d have to come home and spend hours telling everyone the bad news over and over again on the phone.  Once the blog was in place things were a lot easier on us emotionally.

As to how many people have come in to the site, my logs tell me that about 15,000 distinct addresses have hit it.  That doesn’t tell us much though, they may have found us by accident after a Google search, who knows.  I have hundreds and hundreds of emails that I have answered in the years that it has been live, though I’ve never really counted them.  I had no idea when I created the website whether or not anyone would ever read any of it, it was just something I needed to do.  I am thrilled though that so many have found it useful and that it has brought such a large community of people together.

Oh, and you asked about the cord blood infusions at Duke.  Currently around 40 kiddos have had the infusions done – two are being done today.  We have recently started a formal study at Duke to see whether or not we can prove that the cord blood produces better outcomes.   This is very exciting because it could open up the treatment to a wider group of people that might not be able to travel to Duke if they can prove it to the rest of the medical community.

Tuesday, November 15, 2011

The Waiting Room

I failed my one hour glucose test.  I hate failing tests.

So now I find myself in the waiting room of Labs Northwest wasting away after 10 hours of fasting, 1 blood draw, and 3 more to go.  That's 3 hours of waiting in this waiting room.  It makes me thankful for the comfy chairs and relaxing ambiance of Gig Harbor Medical Park, the free wireless internet, and Yaya Mary who is babysitting.  And besides the fasting, the glucose drink, and the continually pokes, I'm enjoying some time to myself.  I brought my laptop, a book, my planner, and a list of things to work on.

And I've realized 3 things:

1). Don't skip breakfast.  And don't just eat cocoa puffs.  My thoughts are so jumbled right now.  And I'm all shaky from the suped up kool-aid glucose drink they make you start your day with.  I just googled "google."  It's hard to put together a cohesive sentence or rational train of thought.  I regret all the times in high school when I ran out the door with just a nutrigrain bar before a double period of Mr. Bond classes.  I really think I would have knocked those Henry V essays out of the park if I had eaten a complete breakfast.

2). A lot of people blog about food.  I opened my google reader and quickly minimized it.  That's great that you just found an awesome new pumpkin soup recipe.  I can't read about it right now.

3). I really, really, REALLY do not want to have gestational diabetes.  I doubt anyone does.  But I'm really, really, REALLY excited for Christmas and all the goodies that come with it.  Having to monitor my insulin levels would put a real damper on my holiday season.

And as my thoughts become more muddled, my second blood draw draws closer (seriously, I can't write at all right now.  I apologize for the lack of quality in this post).  I think the next two hours will have to be spent doing something productive like mindlessly surfing the internet, while avoiding websites about food.

I'll update with my results when I have stomach full and my brain back.

Monday, November 14, 2011

Refreshingly Normal

I had my first (and hopefully final) follow-up ultrasound today.  Because Aurelia didn't develop hydrocephalus until sometime between 21 and 27 weeks, my perinatologist decided that we should monitor this pregnancy closely to be on the safe side.  I've had the same tech for all of my higher level ultrasounds with both pregnancies and it was refreshing to hear him say, "Everything looks perfect."  Nothing to report, no consult with a genetic counselor, no quick talk with the perinatologist, no scheduled follow-up.  It's a wonderful feeling.

Friday, November 11, 2011

The List

Thirty things to do or accomplish by the time I'm 30.  I tried to think about various aspects of present life from parenting to holiday planning.  Some of these are a given.  Some of them are quirky.  Some of them require a bit of an explanation.  All of them are doable. 

1. Have a baby. Go big or go home, right?

2. Finish Aurelia's baby book.  

3. Get an article published.

4. Go to a concert. Yes, I've been to many concerts.  But it's been a few years.

5. Have a glass of wine with Carlee, Anna, Shan, Holly, Emily, and any other Forest Fire ladies. So, maybe it will have to be a root beer.  Or maybe we'll have to wait until after I accomplish goal 1.  Or maybe it will have to be over skype.  But these women need to be a part of any life celebration.

6. Re-memorize the Gettysburg Address.  I did it in high school.  I think it's a good thing to have in my head.

7. Make a life list.  Why stop at 30?  And the life list will be bigger, better, and much more epic.

8. Make something for each of my daughters.  This might be the biggest challenge on the list.  I lack craft.

9. Get 6 consecutive hours (or more) of sleep.

10. Come up with a name for our daughter. 

11. Deliver Christmas cookies to our neighbors.

12. Meet Whitney Phelps for coffee.  Whit is one of my favorites.  She's at law school in Seattle and we've seen each other only a few times.  Putting it on the list makes it more official.

13. Host a Christmas party.

14. Wear leggings. Ok, so it might sound weird.  But I have leggings and I think I can pull them off, but I've been too scared to try.

15. Paint my fingernails.  Another weird one.  I see all these cute blogposts about polished nails.  I have this strange aversion to my nails painted.  BUT, since I can't paint my toenails anymore ('cause I can't reach them comfortably), I'm going to get over my issues and start painting my fingernails and not immediately removing the polish.

16. Finish writing about Switzerland.  Yeah, we went to Switzerland in June.  And I've written about it and not posted.

17. Not use shampoo.  Crunchy confessional: I haven't washed my hair in over two weeks.  I'm doing the baking soda and apple cider vinegar regime.  And my hair feels great!  

18. Finish my blog revamp.  I have a friend working on a blog redesign for me.  Look forward to it's launch soon!

19. Gain 10 lbs.  

20. Lose 20 lbs (or more).

21. Make salt.

22. Take Joey on a date.  I've already planned it.  Now I just need a babysitter.

23. Decorate our home.  We've been here for almost 5 months and I have yet to hang a single picture.  Sure, we've done some projects (and by we, I mean Joey), but we need to make this house home.

24. Go to the cabin.  Preferably while it's snowing.

25. Read an Alison Weir book.  When my grandma died, she left me a lot of her book collection.  This includes 10 books by my favorite historian (yes, I'm a huge nerd).  I have yet to read one of them.

26. Memorize "The Journey of the Magi." By T.S. Eliot.  Seems perfect for this time of year.

27. Get Aurelia to army crawl.

28. Get Aurelia to say or sign something.  I know those two are TOTALLY out of my control.  But why not shoot for the stars?

29. Meet Lisa Sorenson and family.  Lisa and her fam are the closest hydro clan geographically in my little online crew.  We don't make it over the mountains as much as we used to, and when we have, it's been when she's traveling the world.  But we WILL make this meet up happen.

30. Readers choice.  Seriously, make a suggestion.  Keep in mind that I'm pregnant.

And there you have it.  I'll be posting periodic updates as I accomplish goals.  It's going to be a busy few months!

Thursday, November 10, 2011

30 by 30

I took my good friend Autumn out to breakfast this morning for a belated celebration of her 30th birthday.  Autumn has been one of my very best friends since the first day of high school when we decided to stick together on the all school field trip.  I only knew one person in our entire school (all 100 students), so making a fast friend was huge for me.  At her 15th birthday, Autumn told me that she felt like we were kindred spirits, just like in Anne of Green Gables.  That's a huge complement for a 14/15 year old girl.  And we've stuck together ever since.  We've been friends for over half our lifetime.

Christmas banquet, sophomore year. Autumn thinks I look scared of her. 
And today we dragged our pregnant selves (she's due a month after me) and two kiddos out to Shakabrah for a delicious bite to eat and a chance to laugh about how our moms wouldn't let us listen to The Verve Pipe and how we recorded The Peoples Choice Countdown on cassette to listen to on the way to school.  It was a great morning.

BUT here's the issue that I'm faced with now.  Autumn's birthday (which was actually two weeks ago) is exactly four months before my birthday.  When we were younger, Autumn's birthday meant that I would be the next girl in our little group to have a celebration, or get her license, or register to vote, or buy a beer, or whatever rite of passage came with that year.  Now it means that I'm the next friend to turn the big 3-0.  That seems like a big deal.  And I'm forced to ask myself, "What have I ever accomplished with my life that's so great?"  

I know that I've done some really cool things.  And I'm hoping to live a lifetime of doing more really cool things.  And in that spirit of accomplishment I'm making a list.  30 by 30.  30 things, big and small, that I want to check off my list.  Don't worry.  I'm not going to get all crazy and try and learn Mandarin or run a marathon by February.  These will be reasonable goals.  And don't worry.  I'll give myself a healthy heaping of grace.  After all, I am 6 months pregnant and toting around a 14 month old.  But I do want to enter the next decade of my life masterfully.  

I've given myself a bit of a head start in that I started working on writing this list after Aurelia's 1st birthday and have a few that I can cross off already.  I'll have the complete list up tomorrow.  And it will be epic.  Prepare yourselves.  

Wednesday, November 9, 2011

Be Thankful

"Give thanks in all circumstances; for this is the will of God in Christ Jesus for you."
1 Thessalonians 5:18

This morning I opened up my snazzy new planner to the second week in November and was reminded to "be thankful."  It certainly is that season.  My facebook page is littered with daily thanksgivings.  My blogroll had 4 posts on thankfulness this morning including this lovely post at the lovely messy by one of my favorite friends.  

So, I started thinking, "What am I thankful for?"  What are the things in my life that I should be thankful for?  Well, there's the obvious ones:

And I am so thankful for these two (and the one that's practicing roundhouse kicks on my ribcage).  I never dreamed that I could have someone who loves me like Joey does, he is a constant blessing.  And Aurelia, that kid has changed my world.  She enriches my life with her joy, determination, and contagious smile.  But really, being thankful for those two (soon to be three) should be an understood, right?  It doesn't mean I shouldn't say it and express it.  I celebrate the gift of my family every day.  And I'm thankful for a home, for health, for happiness.  That's all well and good, but it's also easy.

What about the things that are not so easy?  Are we really supposed to be thankful in all circumstances?  Frankly, some circumstances don't inspire a spirit of gratitude.  Some circumstances make me grimace.  Some circumstances are downright crummy.  Can we really find reason to be thankful in life's difficult moments?

When I was a junior in high school, my school had it's annual Thanksgiving Chapel complete with an open mic time for students to share what they were thankful for.  I stood up and said that I was thankful my mom had cancer (with the confidence and naive enthusiasm only a naive 17 year old can have).  At the time, Mom was in month 18 of her battle with colon cancer and things were looking okay.  And I was thankful that my family had gone through that trying time.  It had brought us closer, given us some very tender moments, taught me about selfless love and the power of faith and prayer.  But two weeks after this chapel, my mom passed away.  As the next November approached, I thought about my previous statement.  Was I still thankful that my mom had cancer, even though it had claimed her life?  

Fast forward a decade-ish.  After over two years of heartbreaking loss and goodbyes to babies we barely even got to glimpse, Joey and I were faced with the tough decision to move from a place we loved in order to pursue a "healthy pregnancy."  Thanksgiving 2009 found us freshly back in the states, stamps in passports still drying, and a sense of longing and regret for a place worlds away.  Although we felt like we had made the right decision, we also felt a little empty and discouraged.  I didn't feel much to be thankful for outside of the easy stuff (family, friends, dryers, microwaves, good espresso).  Was I really supposed to be thankful at a time like this?

And, of course, the next year was filled to the brim with emotional upheaval: finding out we were having a girlfinding out about hydrocephalus, welcoming our daughter into the world, and so much more.  It was a great year, but a hard year.  Our 5/10/life year plan changed the day that 5 syllable word entered our life.  Can I honestly say that I am thankful for hydrocephalus?

And so I sit here on my tweed couch, thinking about these questions, living a life that I definitely did not plan, and I rest in the asnwer, "Yes."  Yes, I am thankful for all of these circumstances.  Do I love them?  No.  Do I like them?  Not really.  I don't like cancer.  I don't like pregnancy loss.  I don't like the condition that caused my daughter's brain to be injured.  These things do not make me happy, and they shouldn't.  These things do make me thankful, and they should.  

I see how these circumstances have shaped my life, my bigger picture.  And I look at the life that I'm living, the life I didn't plan, and it's beyond anything I could have asked for or dreamed of on my own.  Even in the absolutely difficult moments, I know that I can be thankful for this life I'm living.  The point of all this rambling is that I want to be thankful for the not so obvious.  And I want you to be thankful for those things in your life too.

“Every moment and every event of everyman's life on earth plants something in his soul.”
― Thomas Merton

Monday, November 7, 2011

The Big 0-5 and the Big 5-0!

We celebrated two big birthdays in our family this last week.  Our nephew, Jaron, turned the big 0-5 and my lady, Mary, turned the big 5-0.  And we celebrated these two and celebrated them well.

Jaron, affectionately referred to as The Nugget, is the most literal ball of energy ever.  Literal in that he takes everything literally, ball of energy in that he rarely slows down.  For his birthday, Joey and I decided to take him on an adventure full of fun things for a kid on the move.  We started the afternoon at the taco wagon:

Eating from the wagon in the back of the wagon.

Then we headed over to the Tacoma Children's Museum for Free Friday.  Both kiddos had a great time playing.

Here's Aurelia thinking ON TOP of the light box.  Great exercise for a VI baby.

Jaron loved the marble shoot.

And discovering dinosaurs.

I love running into friends unexpectedly, one of the great things about living back "home".  Aurelia and Ella are a month apart and haven't met yet.

We ended the day at Jubilee Cupcakes in Proctor.  I called four cupcake places trying to find a soy free option for our super soy allergy birthday boy.  Jubilee came through!

The next night, we celebrated Mary's 50th birthday.  Mary is my step-mom. . . but I really don't like that word.  Maybe it's partly because I don't want to feel like the red headed step child, or maybe it's just that Mary deserves a label free from any sort of negative vibes.  Somewhere along the line, I started calling her my lady.  Dad and Mary got married when I was 17, and they have a beautiful love story that I'll have to share at some other time.  I feel so blessed to be able to call her part of my family.  If you know this woman, you know that she is premium and you're probably jealous that I get to be related to her.

For Mary's birthday, Dad went all out planning a birthday bash.  Food was provided by Hole in the Wall BBQ (having family that can cook is pretty amazing).  I made a "yearbook" for all the guests to sign.  Friends and family came from all over to celebrate.  And of course, there was a lot of dancing.


Avery, very fun age range dancing to Footloose

Yes, and even pregnant ladies can dance to YMCA.  Although I have to admit I had a hard time doing the macarena, that jump and turn was a little much (and probably hilarious to watch).

Me, the birthday lady, sister-in-law K-Lyn, little sis Al
I love everything about this photo.

And it's so great having parents that are in love.

And siblings.

And more siblings.

And to be in love too.

Doesn't The Hawk look dapper in his Afghan jacket?  And the mustache, he definitely had that in our family Christmas photo we had taken early that day. 

Just have to point out that Nikki is due a little over a month after me with twins, girls #4 and 5.  

Dad pulled off a great party.  Everyone kept telling Sarah and me what a great job we did planning, but we didn't do anything besides show up, eat, and dance the night away.  So much fun celebrating our lady!

Thursday, November 3, 2011

Musings of a Hydro Mom

I have a few more hydro mom blogs I've been saving in my back pocket.  Even though it's not National Hydrocephalus Awareness month anymore, it's still so neat to hear these lady's beautiful stories.

Meet Lindsey of Musings of a Hydro Mom.  Lindsey blogs about her family and adorable little Marlena.  I love her openness and honesty about some really tough subjects (see the last question in this interview, it will make you cry).  I also love her heart for advocacy and spreading awareness.  And her Hats for Hydro are such a great idea and are so cute!

Tell us about your family. If your child has multiple diagnosis, feel free to share them.
I have a family of four, including myself, husband of ten years, and two beautiful children. Vincent is my rambunctious two-year-old and Marlena is my sweet 9-month-old girl living with congenital hydrocephalus.
Tell us about the moment you were told your child had hydrocephalus.
We never heard the word "hydrocephalus" from a doctor on our diagnosis day. We were sent home with the words "massive ventriculomegaly." We were able to see a maternal-fetal-medicine specialist on the same day, which was supposed to be a routine, uneventful fetal anatomy scan at our OB's office, which to me was only being performed to know the sex of my perfectly healthy child. I was oblivious to the fact that it was really being done to seek out flaws in our baby. I just wasn't prepared to be called back into a back room. What the doctor said it a blur. "Concerns. The baby's brain," to which I replied, "Should I be crying right now?" The seriousness still hadn't hit me. I just wasn't grasping it. I wanted a name for what was wrong. The OB couldn't tell me his thoughts, but on the order for our level II ultrasound, were scribbled the words "possible holoprosencephaly." Holoprosencephaly, or HPE, is a condition where the two hemispheres of the brain fails to separate to some degree if not completely. Marlena was found to not have this diagnosis a couple months later via fetal MRI. We were offered termination of our pregnancy the very same day of our level II ultrasound. After I went home, I began researching "massive ventriculomegaly" on the internet. I found support that very same night when I found pictures of many smiling faces of happy children living with hydrocephalus.
How has hydrocephalus affected your daily life? Maybe give one "real life" example.
Of course there are therapy appointments and neurosurgery follow-ups that weren't there as my son went through infancy, but the appointments become routine quickly. The only thing I haven't been able to completely shake is the constant anxiety of a shunt malfunction or sudden onset of seizure activity.
Share a moment when you were frustrated or discouraged
So far, pregnancy was the hardest part of our journey. There is just so much unknown. There are so many wide possibilities and so much fresh information. A moment when I discouraged was when I was told that it would probably be best to not have a baby shower until Marlena was born.
Share a moment when you found joy or hope
I felt such amazing joy in my heart when some girls at church threw Marlena a surprise baby shower just weeks before she was born. Their faith never waned.
What do you do to keep your sanity? How do you take a break?
I love to crochet! The repetition is soothing and I just love being creative. I also love that Fall is just around the corner and taking a brisk walk is always good for a mind break.
What advice would you give to a family who has just received a new diagnosis of hydrocephalus?
Never lose hope. There is never a reason not to have hope!
I would strongly suggest they visit this website, created by Michelle Higgins:

How do you deal with difficult questions from onlookers?
I stay open minded. Marlena's head is different, but I've become so used to it, I don't usually realize how different it is until she's next to a baby with an averagely sized head. Living with hydrocephalus definitely shapes a new version of what's "normal" to you, and possibly not so "normal" to others. If someone asked me about Marlena, I would be more than happy to explain what she has and how it affects our family.
What is one thing you wish families with typical situations realized about families dealing with special needs?
Children with special needs aren't so different than children without special needs. They are loved, fought for, and kissed goodnight just like any child should be.
What is your dream getaway (either family, couple, or by yourself. . . or all three)?
I absolutely love Cherokee, NC during the middle of Fall.
What is your child's favorite toy/therapy tool?
Marlena's favorite toy is her wipes case! Closed, of course, but the particular brand we usually buy is encased in a crinkly plastic. She loves to hear the crinkling noise.
What is your favorite coffee (or coffee alternative) drink?
I personally love a Dunkin Donuts Caramel Iced Latte, no sugar, with whip.

Tell us about Hats for Hydro

Hats For Hydro is something that I'm just now trying to lift off the ground! My goal is to provide every little one facing hydrocephalus at birth a cozy crocheted hat. One of the most noticeable side effects of fetal hydrocephalus is often, but not always, an enlarged head size. Often times, there aren't any baby hats that will fit a newborn with hydrocephalus. I wish to change that for all of our miracles. I was inspired by a pretty pink knit hat in our NICU that stretched around my darling 36 wk newborn's 42 cm nogging.

One theme on your blog is "divine appointments". You had a major turning point during your pregnancy where you went from considering terminating your pregnancy to wholeheartedly wanting to sustain it. Can you tell us about that decision process? Tell us about the moment that changed your mind.

The worst three days of my pregnancy were the three days that I contemplated termination. I was a hypocrite. It went against everything I always proclaimed. The decision really does feel a lot different when it directly concerns your personal real life matters. I felt like a murderer by thinking about it, even though I hadn't yet allowed anyone to harm my child. I asked many questions on our diagnosis day. "Will she be able to walk? Talk? Form relationships?" The answer to all of my questions was, "I don't know." Except for one. "Will she have any chance to have a normal life?" The answer to this one was, "No."
During the night of that third day, I was driving back to my mom's house to pick up Vincent after dropping my husband off to work. I was having such a hard time. I was so lost, in such absolute despair. I saw a church with a lot of cars. I was crying hysterically when I drove up, parked my car, and walked up to the doors where some men were in a group talking. They looked at me, with concerned expressions, and escorted me inside. Tears still stained my face incessantly, one after the other, as if they were racing gravity to get down my face. I was hurting. I was alone. I was crushed. My baby, who we thought for those euphoric fifteen minutes in the waiting room was perfectly healthy, was sick. Her future was uncertain.
I found peace that night, as a woman took me into a room alone. She took both of my hands into both of her hands. As I continued to explain what was going on with my baby's brain, she stopped me mid-sentence and said, "Sweetie, that's called hydrocephalus. I'm a nurse." I was a little bit shocked. Looking back, I view this meeting as a divine appointment. I looked up to her, in the most girlish, painstakingly hoarse voice, "If I abort this baby, is that murder?" She paused for a moment and said,
            "God breathed life into your baby."
I felt like these words were being spoken through her by Jesus himself. The conviction in her soft, pleasant voice when she spoke this sentence flowed into my soul. I didn't just hear these words, I felt them. She took me into the main area of the church where they were having a special guest speaker that night. I cried the rest of the night, holding both hands on my big belly, praying for a miracle. My family was pretty angry with me after I got home, because I didn't exactly tell anyone where I was or what I was doing. I just had to go. I had to find out more about the only One I had to turn to. Now I know that He is real. Miracles are still happening. Jesus is still working through people to help us. I am so, so thankful.

Wednesday, November 2, 2011

Polar Bears

We say that our pool is open year round, but I really didn't expect anyone to take that too seriously.

Then I have to remind myself that Joey and Zach can't be taken too seriously either.

There was definitely a moment of hesitation.

But sometimes you just have to go for it.

There was no treading water or splashing about it in this quick dip.

Just a lot of yelling and shivering.

And smiling.

I think Zach's quote was, "When I hit the water, I thought 'I'm in too deep!' and I started to panic."

And Joey's quote, "This is seriously colder than the bridge jump on New Years Day."

In the end, two proud friends say that it was worth it before rushing to warm showers.