Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, November 26, 2012

"Like her..."

Thanksgiving this year was wonderful.  We got to travel and see family far away in Cleveland, and spend some time together away from all our usual routine, which was nice.  Meagan was basically happy and got to interact with a lot of cousins, grandparents, and other family and friends she hadn't seen in a while.  She also enjoyed quite a few of the Thanksgiving dishes we cook every year.  She picked a perfect time of year to start trying to eat.

All dressed for Thanksgiving

There was a lot of good conversation - small talk, and catching up on family.  Telling what the girls had been up to.  Talking about the progress and setbacks alike Meagan has had.  One evening, someone said to me upon seeing Meagan clap, "Well that is good for someone like her....."  It caught my ear, but soon passed.  However, later on, when my other girls were talking about dreams of what they would be when they grew up, I heard someone say "Well she won't work... but if she does, grocery stores have pretty good jobs for people like her...." while looking at Meagan.

 Now before the blood boils, I know for a fact these comments were in ALL good intentions.  They were trying to be positive, and sometimes talking to someone with a special needs child isn't easy.  Sometimes the words come out awkwardly, and I get that. I know no insult was meant by it, and to this day it has not made me one bit angry or bitter.  But still, being Meagan's mommy, those two words in particular.. "like her.." stuck with me throughout the week.

The conclusion I came to, was simple.  I think too often in our society we dismiss many of our ill, impaired, or challenged citizens with words like that.  We see "them" or people "like them" and we are quick to judge their life, their dreams, and even their future.  We see something other than the "norm" and we immediately feel compelled to react.  I, instead, think we should retain.  We should retain the absolute beauty and innocence of people "like her" in our society.  The joy in which they see the world.  The suffering they endure for all our souls.  And the beauty with which God has given them.

And so maybe Meagan will go to Harvard.  Or maybe a grocery store will have a the perfect job for Meagan... for someone "like her."  But I cannot know the future.  For Meagan or any of my girls.  I can only look at my children and ask God for the strength to be a better mother by living my life the best I can.....

...with determination like her...

...with generosity like her....

...with presence like her...

....with joy like her.

And maybe, if I am extremely lucky, I will be able to view the world with the innocence and purity Meagan sees everyday.  Maybe, just maybe, I will be blessed enough to grow and be a little more.... 

"....like her."

Happy Thanksgiving 2012 to all my family.....my dear husband, my beautiful girls...and especially my sweet Meggy.

Friday, November 16, 2012

Just Because

There are really no words or grand conclusions needed for this post.  The bond between Meagan and her sisters is intense.  And what they do for her in turn, is always selfless.  I happen to catch Maura, the one directly above Meagan in age, and Reilly, my oldest, just being who they are with their baby sister.  The videos speak for themselves.   I love all my girls. Just because.

Thursday, November 15, 2012

Playground 101

Last Sunday, we decided to do something fun with the kids.  It wasn't bitterly cold, and the rain had subsided- a typical cool breezy Fall day.  We figured we'd better take advantage of it. What a better way to celebrate Veterans Day than enjoy our freedoms and do something as a family.  Brian and I suggested going to the playground after Mass... if everyone behaved. 

When we arrived, there were a lot of baseball games going on ... I figured it would be crowded but surprisingly we were the only ones on the playground equipment.  I put Meagan in her stroller and we all walked over to the park.  The kids were playing and having a great time when Reilly said "Hey mom, when did I first go on a slide?"  I told her "15 months old.. and you hated it!"  She giggled and said "Well, Meagan is almost that old.  Can I take her on the slide?"  I thought to myself - why not? I'd honestly never thought of it.  I usually had Meagan in the stroller because I needed to be mobile to keep track of the four older kids... but this time Brian was with us, so I had another set of eyes.  I took Meagan out of the stroller and gave her to Reilly .. and off they went!

Anna wanted a turn next, so she took Meagan on the smaller slide.  I'm not sure if Meagan liked it, but she seemed content with her sister.  And I'd love to know what Anna was thinking in this picture.

Since Meagan had gone on both of the slides, Kaitlin wanted something different to do.  There happened to be a big grid of red cylinders that turned around and had large printed numbers on them in black ink.  Red and black - perfect! Two of Meagan's favorite colors to look at.  Kaitlin sat with Meagan for a bit showing her the fun numbers.

Soon, Maura noticed her sisters holding Meagan. She wanted to play with Meagan too. I asked her what she wanted to show Meagan on the playground.... another slide, the bridge, the walkways ...?  Of course, instead, she wanted to take Meagan up the big climbing tower made of bars - um.......no Maura. So she settled for a self portrait. :)

Monday, November 12, 2012

Pigtails and Piggy Toes

Meagan has been sick recently.  She had some sort of nasty virus, or as my dad always liked to call it, the "creeping crud."  She has had a lot of congestion, coughing, and even had some nasty sounding 'barking' at night the first few nights she was sick.  Now she has the typical "aftermath" ...  drainage, on again off again fever, and a rattly cough.  I wasn't too worried because a few of my other kids and their cousins had the same "bug" but I still hated to see her feeling yucky.  Tonight as I was holding Meagan, I turned towards my dresser.  On my dresser is a large mirror.  She was snuggling me on my chest as she normally does when I hold her, and I happened to look into the mirror.  Meagan had the slightest little cracked smile on her face.  It got me thinking how she must view the world now that she's older.  Does she know what a miracle she is? And then I thought... do I fully know what a miracle she is?
I was at a preschool event recently and a few of the other children had younger siblings present.  They were walking around the classroom, playing, getting into bins, and trying to escape the room when Mommy or Daddy wasn't looking.  Come to find out, they were the same age as Meagan.  Even with 4 older sisters, it's amazing how quickly I forgot what they were like at this age.  It seems only the big things have stuck in my memory.

I found myself smiling at the other children's exploration and all their cute little tendencies as they attempted to be part of their siblings' preschool class.  As Meagan and I sifted through the school party, other parents would say to me "Oh she's such a miracle," or, "It's a miracle she is here."  I hear the words, but do I ever fully stop to appreciate them? 

They are certainly correct.  Meagan has certainly had the deck stacked against her in many ways since virtually her conception, but she is here.  In my arms. Snuggling me and smiling at her silly self in my dresser mirror. As I looked down at Meagan tonight, I could not imagine her absent from my life.  But am I truly taking the time, each day, to take in everything about her and my other daughters? Am I taking advantage of the false pretense that we expect to have another day with our children? Am I recognizing the milestones or accomplishments Meagan works through as the only miracles in her life? Am I missing the little things that are in and of themselves miracles in her being?

I remember in the beginning noticing everything with her because I was always watching and waiting for something new.. or studying every part of her since she'd been apart from me so long in the NICU.  I know I still appreciate those things, but, I don't think I've paused long enough to really put them to memory. For example, her hair.  Meagan has great hair. (Lucky girl!)  She always has, and as you all know, it has been extremely curly.  In the last two months, her hair has grown so much! It is still wavy, but a lot of the actual ringlets have now stretched out.  This made me a little sad because I loved her curls! But I did notice when she was sitting on my lap the other night that there is one large ringlet that still exists on the very top of her head near the front.  Also, if I put her hair in pigtails now, the hair in each rubber band dries into a ringlet instead of straight.  I wonder if she will keep these or they will also straighten into waves. But at least now, there are still a few curls left.

Before Meagan's surgery, I wrote about missing a lot of her old ridges and bumps that would be gone.  As her head has changed and morphed since then, I have noticed a new bump that has seemed to stay.  She has the cutest little ridge that is on the right side of her forehead (to your left in this photo).  It becomes more prominent when she smiles.  We'll see if it stays around, but for now, but I love that she has a new little forehead bump that adds to her character.  It is like part of her old self has joined with her new self. She also loves to have her forehead rubbed to fall asleep....but only on that side.

Who doesn't love baby toes? Meagan's little feet and toes are so tiny and cute. She just recently moved up to a Size 2 shoe (yay).  Even so, her feet are so dainty and sweet.  And even sweeter is when she has her toes painted.  I love watching her kick her feet back and forth on my lap.   I don't remember my other kids' feet at this point - they were too busy keeping me on my toes getting in to everything. But how lucky that I get to snuggle Meagan daily and just admire her cute little pink toes - it's just too much!

I know a while back, I wrote about Meagan's eyelashes.  They are still very long.  If they made mascara that could get my lashes to look like hers, I'd buy it! They are the most gorgeous things.  I love looking at them when she is smiling at me, and admiring them when she is sound asleep. I will never get tired of looking at her beautiful long lashes.

The beginning of last summer, when Meagan was finally starting to reach and touch toys or hands, she would curl her fingers and 'scratch' it over and over again.  I guess it was her way of testing out the new things she was touching.  Since working so hard on grabbing her toys, she doesn't do it all the time anymore ...but, for some reason, she still does it to my hand.  If I put my hand out, she will put her hand in mine and curl up those cute tiny fingers and scratch.  She loves hands.  For some reason, she loves to look at them, study them, and even move them to her face.  Her little hand scratch is something I don't want to forget.  

 Taking the time to actually stop and note each little miracle about Meagan has been a joy the last few days.  I notice these things all the time, but rarely stop to think about, and put to memory, how blessed I am to see her beautiful curls, or little quirky behaviors everyday.  We have so many appointments, therapies, and school and daily obligations with my other daughters that sometimes, Meagan's 'bigger' goals become the focus, and I forget some of the little things.  

If God performs miracles, then certainly the little things that make up those wonders must be miracles in and of themselves.   Those are the things that may get lost in the big picture of our busy lives.  Years down the road, or when we have a tough day, I want to be able to look back and read about Meagan at 6 months old,  14 months old, 5 years old. Not necessarily what we did at therapy that week, but the curls, eyelashes, painted toes, and her unique behaviors like scratching my hand.  I want to honor this special little life that God gave me by not just skimming the surface, or making progress notes or goal changes every 6 months with a doctor or therapist.  I want to instead soak up all the little things along the way.....and remember them.  It is only through viewing everything along this journey as a miracle that I can truly appreciate the special little girl God placed in my arms.

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." (Albert Einstein)

Saturday, November 10, 2012

God and Country

As we all know, Veteran's Day is November 11th.  This is a day we recognize and thank those who have served and are serving our country to protect us and keep us safe.  I know it is nowhere near a parallel, but everything we have been through with Meagan this year got me thinking about the intensity of the sacrifice our military makes each day for all of us.

To say it has been a fight from the beginning of Meagan's existence would be an understatement.  The fight against termination suggestions, the fight to get her here when it was in her best interest, the many fights in the NICU to mother my child the way I saw best, while balancing that with the excellent care the doctors could provide, the fight with doctors and specialists to listen to me, the fight Meagan has to endure everyday to grow and be her best self.  But...of course I will fight for my daughter.  She is my child; my blood; my life.  It was and still is absolutely exhausting, but all of this fight came naturally to me - I am her mother. Think about the commitment our servicemen and women have to make.

Our Marines, Sailors, Soldiers and Airmen choose to endure tough training, long deployments, be away from their families and literally put their lives on the line to fight.....for people most of whom are complete strangers.  What an amazing show of strength and selflessness it takes to take up such a responsibility.  Many of us have family members in the military, but even so, as a whole, those in the service say "yes" to protect people they have never even met, may not agree with, and even those who may not fully appreciate what they do.

Being the granddaughter of an Air Force officer, the daughter of a Naval officer, and the sister of a Recon Marine, Veteran's Day has an intensely special meaning.  I feel next to instilling our Catholic faith in our children, the next most important gift I can give them is the true understanding of what a gift it is to be an American. It is a gift from God, a gift from our Founding Fathers, and is a never ending gift from all those who serve everyday to make sure that promise stays true.

When you order that Starbucks coffee, drive safely to your place of employment, walk your child to the bus stop, or freely enter your church, stop and remember why you are able to do those things.  We truly are one nation, under God  - only He has the power to give those who serve this nation the purpose and conviction to do what they do each day.

Remember that there may be a mom or dad somewhere who is away from their child so they can fight for yours.  Remember that there may be a child somewhere whose dad is missing her father-daughter dance so you can take your daughter to her dance.   Remember that freedom isn't free - and our veterans deserve much more than a day.  They deserve our gratitude, our respect, and our continued support everyday, of every month of every year.  And the only way that continues to happen is with us.  It is our responsibility as the beneficiaries of their sacrifice to educate our children properly, reach out and support veterans in any way we can, and encourage our own family members to serve others as selflessly as our Veterans have and continue to do.

So this weekend,  Meagan and family join many others as we say "THANK YOU" to our Veterans. Your sacrifice does not go unnoticed - may God bless you all and may our country never waiver in gratitude.

Happy Veteran's Day