Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, June 25, 2013


Anyone who has a house full of kids (especially girls, I might add) always gets a good dose of "drama" throughout the day.  My favorites are really the "non" problems that get made in to 'something' because someone gets 'annoyed.'  I constantly hear "Mom she's looking at me.......Mom she's making an annoying sound .... Mom she's copying me!  Mom, she's STILL copying me!!"  I try to remind the girls that little siblings copy the big ones because they look up to them...they are trying to be like them and that's a huge compliment.  Sometimes that explanation works...sometimes it doesn't. But that's a house full of girls for you.  It's always entertaining around here.   

Is there any doubt these faces could be anything but entertaining?!

Reilly playing peek a boo with Megs between competitions

Anna getting some Meagan snuggles

What the girls may not know is while their sisters copying them is really annoying (I get it... I had a little brother and this was one of our favorite "games" with each other... who could outlast the "copycat" best...), they are actually helping Meagan at the same time.  Everything they do is teaching her something. Even if it doesn't seem like it at the time.

Kaitlin "reading" with Meagan

Meagan is in a huge mimicking phase right now.  Ever since she has recovered from her last illness, she is doing great.  She is happy, healthy, and just absolutely loves to be around her sisters.  (Dare I say it...she is doing really well and is finally on a good streak for the first time in months! :) )  She always "played" or smiled around them, but now she wants to copy them.  It's been another "jump" in Meagan's development we have noticed in just the last 3-4 weeks. 

Meagan loves to watch the girls' face, mouth, hands.. and just stare. And stare. And almost study their every move.  Then within a few days, we see her trying to do some of the things she's been watching. At first it's almost robotic - like those newborn baby movements where it still looks like they are underwater. But then within a few weeks, we will just notice one day she 'does it.'  Like it's something she's been doing forever.  

Meagan trying to "jump" like her sisters

I  have to give credit where credit is due.  As much as I can joke around about the times my girls annoy each other (they would get an A+ in Drama), I also have to be fair.  They really are just such good girls.  As with any siblings, there are times where they need space but can't get it... so we get the "mom she's _____ (fill in blank with whatever annoying behavior they are doing at the time)" ... but overall they are so good.  They are sweet to each other and help each other out constantly.  This transcends down to Meagan as well.

Meagan trying "so big" on her own

I always look at my girls in awe each day.  Even the times they are having their "drama moments" I think what a boring life I would have without them.  They are all such blessings, and now with Meagan, I realize their greater purpose.  Meagan has a team of doctors, therapists and specialists.  She has me and she has Brian who try to give her everything each day.  But truly I'm realizing her sisters are her greatest teachers.  Her greatest advocates. And will be her greatest guardians as life goes on. (So don't mess with her or her team will corral around her in a second!)

Kaitlin helping Meagan with a little practice

Maura attempting to dress Meagan (this one is funny..but then again it's Maura)

So now when one of my girls complains someone is "copying them" ... I just turn it around tell them to go show Meagan.  They usually smile and then run off to show her.  And when Meagan starts copying them, they don't mind one bit.

Meagan copying Anna (before whacking her in her loose tooth) haha

God of course is the absolute center of our family's spiritual life.  Meagan, though, certainly grabs the "center of attention" position in this family. But that makes sense to me.  Because she is the most innocent.  She sees things as they are and she has no prejudice about anything or anyone.  She loves with all her heart and sees joy in every situation.  So the fact that she steals the show doesn't surprise me.  If God is at the center of our hearts, it only makes sense Meagan comes in second... she, afterall, is so close to God's heart.  And that joy is the gift she can give my girls in return. 

"Joy is a net of love by which we catch souls..."
--- Blessed Mother Teresa

God's pure joy

 Sometimes being the little sister is exhausting

Tuesday, June 11, 2013


There is a "famous" blog post called "Holland."  It talks about the life changing experience of having a child with special needs by comparing a trip planned to Italy being diverted to Holland.  It is inspiring and comforting for parents new to this journey.  Recently, however,  I came across another blog post (which you can access here), that was more true to point. While "Holland" is certainly uplifting, this new post I read was the true nitty gritty of being a special needs parent.  It instead describes planning a trip to Paris and then unexpectedly being dumped in the middle of a desert. As I was reading through the funny and bluntly honest emotion the author wrote, one line in particular stood out to me.  The author states, "At times, you're lonely for all the friends you had who went to Paris..."   Wow I thought.  That is so true.  And something I really hadn't thought about until I read it.

In the midst of this new adventure, we change. That is to be expected, as with any new experience we go through in life.  Even on the new path Meagan led us down, we felt prepared for the changes our family would undergo.  What we didn't prepare for is how when we finally came up for air, life around us would have also moved on.  Friends who had been on our same trip to Paris would have not only been there by now, but settled in and seen the sights.  I think sometimes it is hard on both parties.  We yearn for the friendships of the past, while at the same time, our old friends yearn for a way to relate to our new life, or somehow understand what we are going through.  It's only natural that this occurs - none of it is good or bad.  It just is what it is.  But even more importantly, what I realized after reading the blog, is that while sometimes we may have those fleeting moments of wishing to be close to our Paris friends, the desert, while unexpected, is certainly not lonely.  Others have been dropped here too.  And new friendships are formed and flourish.  Because only the other desert residents truly know what it is like.

 I guess this is no different than other life changes.  All of life's new paths bring both excitement and nostalgia, happiness and sadness at the exact same time.  That's what change is.  But what we have to do is just realize that it's ok.  Our new friends in the desert are ever so special, and the bonds formed become unbreakable. At the same time, we wish our Paris friends well and enjoy reading about all their new adventures.  We are happy for them but no longer yearn to go to Paris because we can't imagine our life not being in the desert.  Would life without Meagan be worth it to have made it to Paris? No.

It seems a good opportunity to say to  my Paris friends I miss you, but I always think of you.  I wish you all the joy in the world and am ever so happy you made it to the planned destination.  We may not talk as much as we used to, and we may have different lives now, but that's just the transformation that happens.   I also understand it may be hard for you to figure out how to relate us now...our experience as special needs parents is foreign to you, and it may make you unsure if we can relate anymore. And that's completely ok... But I assure you, we can.  We can still learn from each other.  I know you learn from Meagan everyday and how our life has changed because it is outside the norm you are used to. But we like to hear about Paris too.  Let us know how things are.  Send us a postcard and let us know what Paris is like. And we'll try to explain the desert the best we can.

You can access the blog that inspired my post here :http://not-hothead-yet.livejournal.com/703116.html

Wednesday, June 5, 2013

I scream...you scream....we all scream.....

.... for putting a ball into the toy! Yep, you read that correctly.  Not ice cream!

The girls were helping Meagan try out her new toy when I heard screaming from the other room. Like blood curdling loud girly screaming.  I ran in to see what had happened.... and Reilly told me "She did it mom! She got the ball in the toy!"  Whew! These girls....

Just something as simple as helping Meagan put a ball into a toy.  These are the little moments of joy that happen in the Gareau household.  And I love it!

Monday, June 3, 2013

The Infamous Shoe

The hospital stay last week was unexpected, and therefore, so was our weekly "schedule."  I missed all my girls' end of the year parties, Kaitlin's field trip, Reilly's violin lesson, and the list goes on.  Not to mention the household chores (namely laundry) that completely fell behind from me not being there to balance out the family.  These interruptions, especially the unexpected ones, always take a toll on the family in one way or another.  We have come to learn that this kind of up and down will never change - it's out of our control.  We could have another hospital stay next week - or avoid one for a whole 5 or 10 or 15 years.  But, the fact is, we never know.  We can control, however, how we live with this.  Something I've been asked by some family and friends is how do you live day to day when you are just waiting for that infamous shoe to drop?

Meagan doesn't do shoes

Meagan came home Thursday night from the hospital.  Friday she was still pretty miserable - back to "herself" a lot more, but, I could tell she was still "down." Saturday morning she really woke up "herself" for the first time since her infection.  She was smiling, babbling, and just seemed like the meds had "kicked in" and helped her turn the corner... I could tell she had really started to feel better.  I was so glad about this, but of course the rest of our house was in chaos.  I had lost a week of laundry, house chores, and organizing the kids end of school year stuff...but most of all we lost that week of time as a family.  I knew my older girls were especially feeling this because they really count on our routine day to day and when Mommy isn't there, it is really tough on them.  We  had no grand plans for the holiday weekend, but, after talking to Brian we decided to randomly shoot up to Chattanooga, TN.  It's only about an hour from where we live and makes for a nice little getaway without being too far from home.  I figured we could all use the break, and time away to just regroup as a family.  We packed a small bag, loaded up Meagans feeding pump and meds, and hopped in the car. The girls were beyond excited!

Finally strong enough to go in Mommy's Ergo carrier!

Girls were so excited

We planned a few outdoor activities while in Chattanooga, one of which was taking the girls to a minor league game (which is great because the seats are cheap and close so they can actually see the baseball game).  We happened to sit next to a couple who we chatted with off and on throughout the game.  Come to find out, he was a Perinatologist.  Go figure.  They were very nice and even bought our girls popcorn because they were behaving so well.  I thought that was really sweet and the girls were just so excited to get an unexpected treat. They also got to see some fun fireworks after the game celebrating Memorial Day weekend.  Maura was not too fond of the noise...but Meagan liked them just fine!

Meagan loved the fireworks.....

....but we learned she does not like hats on her head!

We also planned a few hikes through the famous Rock City and also underground to see Ruby Falls.  It was such gorgeous weather, we figured a lot of outside activity would be great for the girls - and the fresh air would be great for Meagan after being in the stuffy hospital the week before. The girls enjoyed the hikes, exploring the natural rock formations, and expending a lot of energy walking, running, climbing and overall enjoying the outside activities.  From rock climbing to watching live mountain music to swimming at the hotel - we had such a great time and a much needed break away from it all as a family - "just" the 7 of us.

Pool time!

Seeing Rock City

Heading down into the caves

When we got back, one of the first things I was asked was how Meagan was feeling.  I replied that she was doing much better and had been such a happy baby over the weekend.  And that's when the question was posed - how could we just pack up and go away for the weekend when Meagan had just been at Children's? Weren't we worried?  And that is where I realized that from the outside, a lot of things we do probably do look a little "crazy."  From the outside, it may seem silly to run out of town on the tail of a hospital stay.  Or to plan a family vacation after a surgery.  And the list can go on and on.... but from the inside, it is completely normal to do these things.  If we try to wait for months and months of uninterrupted time to feel "ok" to plan family activities, we would never do anything.  We would always be waiting around.

I guess that's what I learned over our weekend away.  Thinking back on my friend's initial question the week prior about "waiting for the infamous shoe to drop" .... I guess we just don't.  We don't wait around. We don't constantly worry. We just "do."  We just "go."  We just live.

Meagan taking in the waterfall

We will always be vigilant in Meagan's care - we just know her and her tendencies so well at this point, we keep a very watchful eye.  We carry her records and her CT scans with us.  We take her meds and her feeds along.  We always know the best place to go in case of an emergency.  But from day one, our main goal for her was happiness and love - that she always felt those two things around her.  The best way to do that (besides insanely spoiling her with attention and hugs and kisses) is to live and let her live with us.  If we were to always sit around waiting for that shoe to drop again, we wouldn't be giving Meagan a life.  Sure, things may happen that are unexpected.  But that's when you pull up, deal with it, and then hop right back on the horse.  We don't want to give her a life of waiting.  We want to give her a life of "get up and go."  So that's what we did last weekend.  It was random and it was on a whim.  But that's the joy of life. Unexpected things can pop up at any time, and that same spontaneity is how we should deal with life when things are going well.  So, while there may always be that "what if" or that "what else can happen" at the back of our minds, we certainly don't let waiting for those things to manifest occupy our focus.

No waiting in this house...on to the next adventure!

It is important to me that, above all, I keep our family unit strong.  We do that through everyday things like helping around the house, playtime and trips to the store.... and also through impromptu things,  like our trip last weekend.  While my girls will grow up more sensitive to people with needs and challenges by having a sister like Meagan, I also want them to grow up knowing that life shouldn't stop because of it, and exposure to many different experiences shouldn't halt at the feet of those like Meagan either.  In order for me to teach them how truly precious life is, we have to live it even if on the heels of another setback.

Life is too short to wait around.  If we did, something great could pass us by.  I don't want Meagan to be a bystander.  I want her to be the driver of her experiences.  The infamous shoe is there. We know it.  But until it shows its ugly self again, we press on. There's no waiting in this house.  We cherish the happy.... we share the love....we grasp onto faith.  By doing this, we live. And I think Meagan likes that. :)

 Taking it all in

No one said life isn't exhausting at times :)