Thursday, May 31, 2012

Little Braveheart {continued}


It's time to update, to put out there the words that knocked the wind out of us on Tuesday.
Coming to write this post I had titled it from Friday, Liam's Miracle Heart, but with that day having been so exhausting for us I just hadn't finished it.  In a way I am glad because now, his heart is even more of a miracle.  Liam is a miracle.

I don't think there is really anywhere else to start than from the beginning...

When Liam was about 2 months adjusted {so around his actual birthdate} we followed up on a heart murmur that one of the NICU  nurses mentioned to me, and I brought up with our pediatrician.  We looked into it and they found a significant anomaly with his heart.  It was unrelated to the murmur, yet we never would have found it without that clue.  We were rushed down to Children's Memorial without returning home.  Literally Liam and I were off to the hospital and at the time we had 3 more preemies at home.  It was tough.  
We stayed a few days to check out Liam's heart.  

They wanted to do invasive testing.  Liam was not even 7lbs. yet.  
{Remember he was born at 2.9 lbs}  

In the meantime we heard of an amazing cardiologist at Rush, where Liam was born.  We felt comfortable there, it had been our second home for awhile.  We sought his opinion.
His decision was to wait until Liam was older and we could do a CT on a 20lb.+ toddler as opposed to an angiogram on a preemie that was not yet the size of an average newborn. 

We chose to wait and walk in faith.  
That was two years ago.

On Friday Liam had his CT, did an amazing job, I was there when they put him to sleep and then we met with Liam's doctor.  All along we knew that Liam had a single coronary artery, instead of two.  The greater concern was that this single path could not course through/between any other major arteries.  As Liam grows, those arteries will get bigger and can squeeze that pathway, leading to sudden death.

Heavy stuff to hear about your sweet, little, mighty miracle.

During our meeting Friday those fears were put to rest about 99%, we had a celebratory Memorial Day weekend.  Then Tuesday while driving Liam and Beckham to the pediatrician, I got a call from Liam's cardiologist.  At their final review, they found that Liam's single path does indeed course between the aorta and right ventricle.  The nightmare was reality.  We were blindsided.  It's not the first time it has happened to hear devastating news about one of our children, and somehow it all just floods back.

Yesterday I was sad, hurt, angry.  
{please allow this tangent that follows from my heart, 
it is by no means meant to be preachy, just helpful and hopeful}
Please give your friends and family that space.  It means the world to allow them that time to feel what they need to feel.  Realize they may not get past it right away or in the time you think is appropriate.  Don't be uncomfortable by it, don't run.  More importantly, realize that it is not a measure of their faith at all, it is a natural reaction to gut-wrenching news, and the best thing you can do is respect those feelings.  Just be there and hold them in prayer.
If you listen closely you will find that all dialogue...all of the tears, cries out, all of it, is aimed above, the faith at that time is more certain than ever.  

We've gone through a few of these times enough to know you can't move 
forward if you don't deal with all of that first.
And of course it isn't all gone in a day, it will take awhile.  

Thankfully we are surrounded by people who understand that, 
and we are so incredibly grateful for their support.  

So here is where we have landed.

What we do know from all of this is that knowledge is power.  Usually this condition is found on an autopsy as the cause of sudden death during the teen years.  There are no documented cases in medical journals of someone having died before ten, yet somehow that is not as reassuring as it should be.  

Matt and I have a lot to review as life continues as normal for our boys.
We have many discussions and decisions ahead of us.
We would love and appreciate your prayers for our guidance.

We have to hold onto this, our mantra and what we will do.


What we know more than anything is that Liam deserves our great faith.
Our Liam Jack has fought from 5 weeks in utero and will continue to have incredible strength for God has his hands on him. 

We know that having this information can mean the difference between 
being able to do something for Liam or something horrible and unexpected happening.
We understand the weight of it and can't express enough gratitude for that,
now it is knowing what to do with it.

Liam will need surgery on his heart, most likely once he is around 8 years old.  
Routine checks and tests from now until then.

We are sad that this is the beginning and not the end as we thought Friday.
It will be a huge walk in faith over the next few years.

Here are a couple other posts on Liam's heart...


We will update as we can.
Thank you for all of your prayers whispered into God's ear for
our little mighty miracle son.


What really matters is that when I just asked Liam routinely yesterday how he was, he replied, "I'm happy mama."  Perfect sweet boy.

Until soon,
Michelle

Wednesday, May 23, 2012

The Bond

Yesterday was a tough one, Matt was working late, the boys were cranky pies because
of allergies, sickness, I'm not quite sure yet, but they had a rough day and so did mama.

We ate pizza outside and strawberries and I was okay with a dinner they loved.
We read some stories outside {one of our favorite summer activities}, 
and I gave them some time to run around before baths.

That time turned into the most magical precious time.

They used their immense imaginations and played continuously, all five, for at least a half hour.
It really was the first time {for all five} there was a stretch of peace...
that was not a direct result of the iPAD or movie... 
no injuries or fighting, no screaming or crying, just pure happiness.

I am thrilled for once I took some video of the moment, 
and well it was the first treasured memory of our summer.

Off they ran around the backyard turning things into airports and taxicabs,
visiting soccer stadiums and catching a parrot in Brazil,
traveling to Disneyworld and watching fireworks,
seriously with big-brother leading the way, they ran and ran
and played.  Everyone contributed something to their ideas
and conversations.  

Ethan said this is the first time I have been able to get all of my brothers and 
me to have FUN at the same time.

It's true.  He has waited a long time for them to all be able to play along with him.
My heart seriously let go of the day's struggles, guilt, and ugly parts.
I felt like the Grinch turning into the Glenda the Good Witch {smile}.

God, I love my boys.

Today Liam, forgetting Ethan was at school, started looking for him to play again.
Soon, Li-Li-Boo, soon, you'll have all summer together.

I know it won't always be rainbows, popsicles and unicorns, 
but last night it was and it rocked!!

Don't you just love those little rays of sunshine,
those moments of bliss that make it all worthwhile 
and everything comes together?  

Thanking God for knowing, I needed that right then and there.

{michelle}



Monday, May 21, 2012

Five things that can hurt a child's heart.

Photobucket

{update: Since I wrote this last night, I wanted to add that this is in no way to induce guilt.  I am talking about significant, repetitive cases here, where people do not realize they are affecting their child, not the fleeting moments of frustration that we work hard to avoid and correct.  No one is perfect and I am surely not one to judge.  
The purpose of writing this was to raise awareness. }

I want to start with the disclaimer that I am not a professional therapist,
but I have learned a lot {and am still learning} from the life I had growing up.

I am not going to revisit it here, but suffice it to say, I have dealt with
some heavier things as a child.

Experience can teach you oh so very much.  

I know sometimes here, in my space, I talk about things with passion and fire.
Especially when it comes to being a mom and how we can impact our children.

I feel like there is this pervasive nonchalant, tinged highly with sarcasm, talk about motherhood lately.  I get it, I am not sitting on my high horse above it.  
We tend to resort to it when we are 
exhausted, tired, and even at times I think people do it because hey,
that's what the cool kids are doing.  
Yet, there is always a gnawing pit in my stomach...
I hope they are just kidding.

For the record, I think most are, and I do have a massive sense of humor,
but sometimes things just aren't funny once you've seen the other side.

Children are resilient to an extent, but we have the power to do damage.

Even moms and dads with the best intentions possible, myself totally included,
can hurt their child's heart immensely.

Here are five things that can really damage a child's sense of self and security. 

Calling a child negative names.  About a year ago, and not solely for this reason but it was a contributing factor, I had to end a friendship because a friend could not stop talking negatively about her son.  The last straw was when she called him a bum because he did not want to play a sport she enrolled him in.  While saying it with a touch of humor, I could tell she really meant it, and those words just kept echoing through my head.  
What if he heard that and does he?  

Wishing your child was different at their core.  This is a tough one because when you have a child that isn't like you or is different than you imagined...where did they come from?....it can be hard sometimes to relate to them.  Struggling with that is not what I am talking about here.  I am talking about wanting them to be different, intrinsically different from who they are and who God created them to be.  It's so important to stop and think, what message am I sending if I am telling my child who they are is not good enough for me?

Choosing a favorite.   I have read in more than one place lately that it's natural to have a favorite child and it's not really a big deal...really?  Let me tell you how it feels to not be the favorite child...completely and utterly horrible.  I have been there and when you are a little soul, you do not understand that it has absolutely nothing to do with you.  You think if I just try hard enough I'll win them over, which creates a people-pleasing child who loses sense of who they are.  In your own mind, you may love that one of your children is super cuddly or that one listens and wants to help, and those feelings are totally normal.  The issues lies in that really can never be the basis for how much love you show or give.  

 While I do think it's completely normal for siblings to tease one another about being the favorite, that's really all it should be, unfounded lighthearted teasing.

Basing the love you give your child on what they do for you.  Wow I hope I can come back to this and read it God-willing in about twenty-five years.  I have seen so many relationships with children my age and their parents deteriorate {including mine and my husband's} exactly for this reason.  Showing love, care, concern, for the child who does for you {in one specific way}....one child may be closer in proximity, more financially able, whatever the case may be.  It's tough to type this one because it doesn't matter how old you are, you are still the parent and you have to love your child unconditionally.  I realize I speak prematurely, before my children have made bad choices and decisions with lasting consequences.  My prayers are for these occasions even now, BUT I hope I can always remember I am the parent.  What if my heavenly Father only loved me for what I did for him?  

Letting your child believe they are responsible for your happiness.  No child should have this weight on their shoulders.  When our children were born did we finally realize how much love our hearts could hold?  Yes.  Do they makes us laugh and beam with pride, of course.  Do we owe them to not hang our happiness on them...absolutely.  I remember trying to get my father to laugh and if I could then he would be happy at it would be a good day.  That was my goal.  I would put everything into it.  That is so not a childhood. Yes, kids need to see emotions and some of the real aspects of life, but they also need to see us happy, enjoying life, and completely feel like they are the biggest part of our happiness, but not responsible for it, there is a big difference.  

These may seem like really obvious things, but I have dealt with each one and let me tell you, it sucks.  As a mom of five, I want to do everything in my power to not ever have my children feel this way.  It can take a long time to heal.

I'll be back soon with a less intense topic {smile}. 
Thanks for listening friends!
{michelle} 

Saturday, May 19, 2012

Ordinary

I am sure I am not the only one who will find it strange that 
I think we are an ordinary family.

I am even laughing as I write this because I realize how funny it all sounds.

Us, ordinary.

Yes, even with all the stares, picture taking, and whispers.  

Plain ol' us.  

We don't have highly groomed backgrounds.
Well, maybe the six-year-old does {smile}.
We haven't traveled the globe.
We don't speak other languages fluently...anymore...unless you count boy as a language.

We haven't finished a triathlon.
{maybe because many days feel like a marathon?}
We don't vacation in exotic places.
Usually we can be found pretty close to home.  

We are a fairly common, typical species...

We {try to} climb trees and pick at their roots.  

We run and explore. 

We get all snuggled up in a towel after sprinkler fun and ask mommy what's for dinner.

We get up close and personal with the creepy crawlies.

Visiting our favorite carousel is a special treat.

And if we feel like getting extra crazy, we take a trip to our local tree farm.

We hug our big brother before he goes off to school, and say
what mom says, "I'll miss you sweetie."

We run some more especially in the sunshine. 

We pretend the bikes we are trying to pedal are our motorcycles, and 
we are part of the most awesome motorcycle gang ever.

And we kiss our brothers' boo-boos on both knees when he asks.

Yes, we are pretty ordinary, but our boys and our life....
well they're extraordinary!!!!!

Enjoy your Sunday sweet friends!!
{michelle}
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