Powerful beyond measure

If there is nothing else you look at on the internet today besides one blog entry, do not let it be this one. Venture over to my truly amazing friend Ally's blog, Trashy Decor, and read todays message of inspiration.

Powerful Beyond Measure

Be inspired on this spring weekend of renewal and hope.

Proud to be their Mommy

I tucked her into bed tonight

(And adjusted her pillow and blankie)

It's been a long exhausting day

(And she sure has been cranky)

She threw every toy from her toy box

And she tossed all her lunch on the floor

She begged me to go out to play

(She just wouldn't let go of the door)

Most people cannot comprehend

The things she has been through

They tell me... "I just can't imagine..."

"How you do all the things that you do."

I sigh... just because they don't realize

How could they ever know?

Just what a precious gift it is

To watch my child grow.

I still remember clearly

Our days in ICU

Hoping, praying, wondering

What were you going through?

Stroking your hand...feeling helpless

Whispering words in your ear

"It's alright my baby"

"Mommy is right here".

Helpless...scared...bewildered

Wanting to just see you smile

Thinking..."I"m not strong enough"

To make it through this trial.

Knowing that... not all children

Survive these surgeries

Day by day...with patience

Constantly praying...for peace.

And so...that is the "secret"

To doing the things...I must do

There is no perfect...inner strength

I guess God brought us through.

And so...when I see... footprints

All over my freshly mopped floor

Or gooey dried banana's

Smudged on the living room door

I wipe it off...with just a smile

Just praying for more to appear

These are my reminders

I'm blessed to have her here.

I tucked her into bed tonight

And as I walked away

I looked up for a moment...and said

"Thank you...for "today".

~Stephanie Husted

Videos of Hope

There have been some great videos and articles come up this past week as Congenital Heart Defects Awareness week came to an end. While the National week of observance is over, CHD's continue to be just as prevalent in the lives of thousands of families around the country.

Mended Little Hearts of Phoenix put together a great video with pictures of local area CHD warriors and facts about heart defects. I encourage you to watch it, not only for the education of the facts, but to see the strength in these children. (And Gabriella pops up in there, too)

And another video and news article on our sweet friend Lauren. Lauren is waiting for a heart at Loma Linda. Her mom was one of the amazing women I met and grew a bond with while attending the support group at Loma Linda. Little Lauren is a teeny bundle of pure amazing, and we are praying that this family's faith and strength continue to provide Lauren with the support she needs to wait for the perfect heart.

Laurens Story: http://www.pe.com/localnews/stories/PE_News_Local_D_heart15.20bc47b.html

Ethans Run 10k

A very last minute decision and encouragement from the mom of Ethan, Paul & I will be running a 10k tomorrow for hearts in Arizona.

Ethans Run is in it's second year operating, and all money raised goes to the Congenital Heart Center at St Josephs Hospital here in Phoenix to help raise awareness and support local families of heart babies and kids. Please read about baby Ethan on Ethans Run website!

Much of the reason we had decided not to do this run was financial, and also that 6+ miles seems a bit overwhelming! But we are now attending and will push through for and with all of our local heart friends!!!

Congenital Heart Defect Awareness Week

This week spotlights the need for awareness and increased funding for research for Congenital Heart Defects (CHD's). Did you know that it was CHD week? Probably not... because awareness for this #1 cause of death in infants is not widely advertised.

Our Family in March 2010- From Portraits

Every year 40,000 babies are born with a CHD. Half of them will need an invasive heart surgery sometime in their youth, while thousands will never make it to their first birthday and thousands more will not make it to adulthood. Almost half of those who have a congenital heart defect have a more complex CHD and will also suffer from neurological or developmental disability, much like my Gabriella. There are 40+ kinds of CHD's recognized but no prevention or cure for any of them.

Gabriella, September 2009, Stroke survivor

Early screening can help save infants born with an undetected CHD. By simply requesting Pulse-Oximetry while in the first days at the hospital, a congenital heart defect can be detected. Efforts of the heart community, and especially a sweet friend Kristine, and one day this will be a requirement.

Gabriella suffered from Restrictive & Hypertrophic cardiomyopathy.... which is the leading heart disease leading to heart transplants. It is also the leading cause of sudden cardiac death in adolescent athletes. It is silent and unpredictable, unless increased screening becomes normal practice. We were given the opportunity to find Gabriella's condition because of an attentive pediatrician, but that is not always the story for all cases.

May 2010, Gabriella's Heart Transplant

The best news though is that just recently, the statistics show that 50% of the CHD survivors are adults, meaning children and youth are growing and living longer with their CHD's! Walking past you in the mall, sitting by you in the theater, there are 2million people, adults and children, walking around with a CHD. Did you know, my sister is a CHD survivor adult (minor CHD) who is a dancer and happily married 25 year old woman. CHD lives everywhere.

Spread the word, share this blog with your friends. With medical advances and increased awareness, more and more people will survive their congenital heart defect and live to do great things! By the grace of God, our Gabriella is one of them!!! Pray for the warriors fighting through their CHD, and pray for the angels gone to be whole in heaven.

(statistics taken from http://www.chfiowa.org/chd_facts.htm)

National Heart Month

Every year since 1964 American Presidents have declared February as National Heart Month. Sunday, President Barack Obama reiterated this tradition asking Governors of the States, the Commonwealth of Puerto Rico, officials of other areas subject to the jurisdiction of the United States, and the American people to join him in recognizing and reaffirming our commitment to fighting cardiovascular disease.

Read the official press release from the White House

Merry Christmas 2010.... delayed

I wrote this blog from my phone on Christmas Eve & finished it Christmas Day. I sent it to the blog and deleted my outbox, only to find it never posted on this website! I was crushed! 3 days later, I received a fail notice with my text... So here was my Christmas post just a few days delayed!



And I thought I've seen miracles this year....

We have witnessed Gods blessings firsthand in numerous ways in 2010. From the generous hearts of people who lent a hand physically or financially to those who flooded the gates of heaven with prayers for Gabriella. From the staff at all of Gabriellas treatment locations & their amazing dedication to children to the selfless sacrifice the parents of precious Abbie made in May. We have seen so many children fight, survive, or be healed in the Holy Spirit in just 12 fast months. I look back and cannot believe my eyes at the miracles we have witnessed.

Christmas lends a whole new perspective to miracles though... One I hadn't focused enough on over the course of the year. Of course, that is what Christmas is for. An annual reminder of what we should be thinking of more frequently. The fact that our Savior came in the most innocent & raw form, a baby. That very Savior that permits daily miracles, redeems us from our own sins and selfish desires and saved not only the world but generations until eternity.

I couldn't even fathom what it was like to live in that time Jesus was born. The turmoil & struggle that surrounded his birth. His life as a human and all he accomplished and endured, yet even though he was there in the flesh, people denied who he was. God sent his son in a form that could tangibly reach the people on earth, to teach them what they might not have learned had he not been alive & human. How easy it could have been for God to show his might by a supernatural blast of light or descending as a spirit. Instead, he found a way to reach us personally in a way we could grasp. And even to this day, some deny the fact that he existed as a man, or that He exists at all. But, my friends, He was and is very real. From dependent infant to selfless man to a spirit risen again.

In that same way Jesus performed miracles so many years ago, but on a much smaller scale, God held our hands this year through the struggle but gave us tangible ways to remember that He was there. For every moment I could tell you that I felt despair or sadness or struggle, I have a praise to share that shows where God was at that same moment. All of that possible because of the life of Jesus!!

There is no better day than today, the day we remember the simple birth of our living Savior, to reflect on how the birth of a little baby saved each and every one of us personally. What a mighty God we serve!!!

You're Here

Amazing song... A perfect one for Christmas!!! Please listen!

http://www.youtube.com/watch?v=v8Um74Jt9U8

You're Here
by Francesca Battistelli
Hold on now, I gotta take a deep breath
I don’t know what to say when I look in your eyes
You made the world before I was born
Here I am holding You in my arms tonight
Noel, Noel, Jesus our Emmanuel

You’re here, I’m holding You so near
I’m staring into the face of my Savior, King and Creator
You could’ve left us on our own, but You’re here


Don’t know how long I’m gonna have You for
But I’ll be watching when You change the world
Look at Your hands, they’re still so small
Someday You’re gonna stretch them out and save us all
Noel, Noel, God with us Emmanuel

You’re here, I’m holding You so near
I’m staring into the face of my Savior, King and Creator
You could’ve left us on our own, but you’re here… you’re here


Someday I’m gonna look back on this
The night that God became a baby boy
Someday You're gonna go home again,
But You leave your spirit and flood the world with joy

You’ll be here, I’m holding You so near
I’m staring into the face of my Savior, King and Creator
You could’ve left me on my own, but you’re here… You’re here
Hallelujah… You’re here… Hallelujah... You’re here

Psalm 139

1 O Lord, you have examined my heart
and know everything about me.
2 You know when I sit down or stand up.
You know my thoughts even when I’m far away.
3 You see me when I travel
and when I rest at home.
You know everything I do.
4 You know what I am going to say
even before I say it, Lord.
5 You go before me and follow me.
You place your hand of blessing on my head.
6 Such knowledge is too wonderful for me,
too great for me to understand!
7 I can never escape from your Spirit!
I can never get away from your presence!
8 If I go up to heaven, you are there;
if I go down to the grave,[a] you are there.
9 If I ride the wings of the morning,
if I dwell by the farthest oceans,
10 even there your hand will guide me,
and your strength will support me.
11 I could ask the darkness to hide me
and the light around me to become night—
12 but even in darkness I cannot hide from you.
To you the night shines as bright as day.
Darkness and light are the same to you.

13 You made all the delicate, inner parts of my body
and knit me together in my mother’s womb.
14 Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.
15 You watched me as I was being formed in utter seclusion,
as I was woven together in the dark of the womb.
16 You saw me before I was born.
Every day of my life was recorded in your book.
Every moment was laid out
before a single day had passed.

17 How precious are your thoughts about me,[b] O God.
They cannot be numbered!
18 I can’t even count them;
they outnumber the grains of sand!
And when I wake up,
you are still with me!

19 O God, if only you would destroy the wicked!
Get out of my life, you murderers!
20 They blaspheme you;
your enemies misuse your name.
21 O Lord, shouldn’t I hate those who hate you?
Shouldn’t I despise those who oppose you?
22 Yes, I hate them with total hatred,
for your enemies are my enemies.

23 Search me, O God, and know my heart;
test me and know my anxious thoughts.
24 Point out anything in me that offends you,
and lead me along the path of everlasting life.

Thankfulness 2010

I wrote a blog post last year on Thankfulness and even one year later I still love it. Finding the light in dark times, finding the calm in the storm, finding miracles in the mess... seems to be my lifes theme 2 years running. What an honor is that? God has put me into a place emotionally and spiritually where I CAN have this ability. Sure, its not easy to ALWAYS be positive. I get overwhelmed just like the next guy. But if I can learn something from that experience or be able to look back, I came out ahead regardless.

This past year has landed its own set of challenges. Reading last years blog entry, I was thankful for things like losing our home, Gabriella's failing heart, strains amongst friends and family relationships, our tested marriage, etc. Still to this day, I thank God for the paths he led me down and how it shaped the way for the year 2010 would be.

I am thankful for medicine. The fact that this is 2010 and because of the advancements in medicine and struggles of heart families in the past, there was a miraculous procedure available and perfected to save my daughters life. Because of the research and procedures Dr. Bailey began over 30 years ago and the hard work put in by the team over the last 3 decades at Loma Linda University, Gabriella is sitting at the table on Thanksgiving day scarfing turkey and pumpkin pie. :)

I am thankful for a very special family, who took their tragedy and turned it into someone else's miracle. They are a part of group of people that I find to be true heroes... organ donor families. While I am thankful for the decisions our donor family and all donor families made, my heart aches for them and their loss. But I am thankful for the possibility that their loved ones can live on and be honored by their recipients!

I am thankful for my heart healthy son who keeps me on my toes and reminds me that we are still the typical family! Still looking for the thankfulness and "calm in the storm" to the terrible 3's.... but I am lucky to have him nonetheless. :)

I am thankful for the amazing support we have been shown by people outside of 'the circle'. Our family and friends have always been there and such an amazing support, but the love and compassion we have been shown from strangers, new friends, organizations, blog readers, has been such a pleasant breath of fresh air. We have been able to be part of some pretty amazing events with Ronald McDonald House, heart communities and groups and support systems that have introduced us to some fantastic people.

I am yet again thankful for financial struggles. This has been the hardest year by far. With overtime, Paul is making just enough to cover the bills, medical expenses and necessities. It is hard, absolutely terrifying sometimes, but has taught us very valuable life lessons. It has taught us to appreciate the dollar, and not only the dollar but the necessary items that dollar buys. Because we have decided that I need to stay home with Gabriella and PJ due to her medical and school needs, we turned this limitation into a learning experience. Of course, I would be thankful is we won the lottery as well. ;)

I am thankful for my husband who works hard for our family. Also, that he trusts me so much with Gabriella's medical care. Having been married almost 9 years, I know that it would be impossible for us to have the super deep level of marriage that we possess without our severe struggles. You can't reach the top unless you've been to the bottom, right?

I am eternally thankful for my faith. God is my rock, my only solid foundation. To know how much I am loved by Him helps me to be a better person. I have seen and experienced His miracles firsthand and feel lucky to have been chosen for that purpose.

I am so blessed to have amazing nieces and nephews and friends kiddos, supportive family members, loving friends both new and old. So blessed to have a cozy apartment and 2 working cars. Blessed to have our needs met. Blessed to be able to give back to other heart moms, charities and organizations by donating items or time or telling our story.

And I am thankful for little things like splurging on a Starbucks latte, the ocean breeze on the Pacific coast, crisp cool mornings in the desert, photographs, DVR, and so much more. :)

On this Thanksgiving, no matter what your story may be, make it a point to focus on one seemingly negative event that happened this past year. Really think about that, and what you can be thankful about from that situation. Encourage others to do the same. This may take a traditional of saying what you are thankful for together and turn it into a dinner conversation topic!

God bless everyone this weekend. Make memories. Take pictures. Think positive. Be thankful.

Our friends at Restoration Church....

I know of people who search and search to find a home church. We are lucky enough to have multiple places of worship that we consider family. The bottom line is finding your own personal relationship with God, and we seem to find our relationship with God in the hearts of people and through the relationships we build with our brothers and sisters at all different churches in different places.

While in California, we had a friend here in Arizona (the worship pastor at Cornerstone Chandler) call his brother in Redlands, CA and warn him we were there and in need of a church family while in SoCal. Soon after Gabriella was released from the hospital, the pastor of Restoration Covenant Church, his wife, the worship leader and some awesome friends came over welcomed us into their lives. Over the following months as temporary residents, we built lifelong friendships with people from this church, and even got to speak one Sunday. And when I say church, I say it in a context that is completely opposite of what you have known your whole life. This was having your super awesome close friend lead you in the word. This was having a small band of 4 blow the roof off of an atrium style glass room' almost literally. This was people reaching out and not only helping each other but striving to wrap their arms around their community because their hearts are so driven to be like Jesus. This was a group who spent all morning at church together, only to spend all afternoon in the park together just hanging out.... the Sabbath. This was sharing common interests, kids growing up together like cousins, taco night, and pure genuine love.

We love our family at Restoration, and cannot wait to visit back on our return to Loma Linda soon. And if you are EVER in the Inland Empire and want to hang with an AWESOME group of people, check out http://www.restoration-church.com/

Anyways, my point. Here are some pictures I wanted to share from Restoration!

From Collages

Miracles

I loved the quote that Miracle Mason's mommy posted today SO MUCH that I had to share it.... it's kinda a theme for the lives both Mason & Gabriella have been given!

"There are two ways to live your life-one is though nothing is a miracle, the other is though everything is a miracle." ~Albert Enstein

Thankful Thursday

Life has taught me a lot in the last 4 months being displaced and distant from home....

I have learned to live with intent because to live is a gift. No one has the right to live. While some live to have a full life, others are taken too soon. Taking this short opportunity on earth to live with purpose is the best gift I can give my Savior. Making that first observation that we have no right to be here, but are blessed that we have been given the opportunity, is the first step to finding true happiness.

I have learned to be transparent in who I am. Those who love what they see have stuck around and those that cannot accept who I am have judged me. To both, I have peace with. To be true and honest to myself has been the most freeing experience.

I have learned to protect and enrich my family with confident, quiet grace. It takes only love and respect to make a family, or any relationship, thrive. Being a wind that causes a fire to grow higher only causes fire to spread and be destructive... something I no longer want to be involved in.

I have learned that there is a whole new way to appreciate your children, and it can only be discovered if you are forced to have to fight for them to survive. While I don't hope this on anyone or expect anyone to understand, I am thankful I personally was able to pull it from our experience.

I have learned to only put trust in a person if you are prepared for the disappointment that they may let you down. We are all human. We are all flawed. Just as I have been let down, I have let others down. Learning from it or being offended by it is the choice we make on our own, but which one is the one God would want us to choose?

I have learned that there is so much good in this world that we fail to see because we are forced by society to notice the negative. From random strangers to organizations, we have been blessed by good-doers, and will strive to always pay it forward.

How could I have not turned these last 4 months into a positive experience? The trial now will be to take home the reformed version of me and pray that she can keep the same focus. It shouldn't be too hard. I watched my daughter go from healthy baby and child to dying in a matter of a year.... but she came out FULL of life.... and I have this smiling face as my reminder:

Finding Peace in the Storm

Paul & I were able to share a short account of our journey with Gabriella at church on Sunday Labor Day weekend. I wanted to share it with you all....

Finding Peace in the Storm

We want to thank the congregation of Restoration for letting us tell our story and all of our amazing new friends we have met there! They have all been a major blessing to us as we have been in California for the last 4 months.

Heart Moms

17 months ago tomorrow I found out Gabriella had a sick heart.

15 months ago last week I found out she would die without a transplant.

6 months ago last week she was listed on the UNOS database for a new heart.

3 months ago today Gabriella was given a new lease on life....

THE DAY I BECAME A HEART MOM

One day my world came crashing down, I'll never be the same. They told me that my child was sick. I thought, "am I to blame"? I don't think I can handle this. I am really not that strong. It seemed my heart was breaking. I have loved her for so long. I will not give up on this child. I will listen to your advice. I will give my child any chance. No matter what the price. I will learn all that I need to help my child thrive. I'll even use that feeding tube. My child must survive!

Will she need a lot of therapy? Will she gain the needed weight? Please God, help me do this. I will accept our fate.

When the monitors beep at night, it serves as my reminder. How many parents would love that sound. Tomorrow I will be kinder. As another Angel earns his wings, I run to my child's bed. I watch her sleep for quite a while. I bend down and kiss her head. I cry for the parents whose hearts have been broken. I look to You wondering why? Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold her life, and guide us through each day. My mind says savor each moment she's here, but my heart begs, "PLEASE let her stay"!

From pacing the surgical waiting room, to sitting by her bed. From wishing for a good nights sleep, to learning every med. From wondering, "will she be alright?", to watching her reach out her hands. With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line. I look to them and smile. You see MY child is loved so much. I would face ANY trial. That scar I trace with my finger (It's the door to her beautiful NEW heart). God must have known how much I'd love her (Just as He loved her from the start).

A heart mom is always a heart mom. Now wise beyond her years. For those who have angels in heaven, our hearts share in all of your tears.

Every day I will try and remember, I was chosen for her (and no other). I will always embrace that beautiful day.......When I became a "Heart Mom".

- Stephanie Husted

In the Morning

I had a sweet new friend send me an email the day Gabriella was released from the hospital, one month ago today. We sat in her room just hours before taking our baby home, and watched the story and listened to the song, weeping. A story of not only a CHD hero, but an endless faith in God.

It was then that we knew, we were in the morning.

The story... 10 minutes and a MUST watch.



And the full song.

Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?

Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see

Chorus:
Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning

My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so just say a prayer.
and hold on, cause there's good who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning
yeah, yeah,
before the morning,
yeah, yeah

Once you feel the way of glory,
all your pain will fade to memory
once you feel the way of glory,
all your pain will fade to memory
memory, memory, yeah

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

com'n, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the hurt before the healing
the pain you've been feeling,
just the dark before the morning
before the morning, yeah, yeah
before the morning

BEFORE THE MORNING LYRICS - JOSH WILSON

Hakuna Matata

(photo taken at Disneyland, California by Pixie Hollow)

If you looked at my albums from our SoCal trip, you probably already saw this picture. I spiced it up a bit on Photoshop and had to repost it.

I can't help but be reminded of the amazing intricate detail God put into this flower. And if he put so much into this short lived tiny hidden treasure I almost walked right past, can you imagine his love for US? It actually reminded me of a few verses I have always loved from the book of Matthew and makes my heart smile.

Matthew 6: 25-34 “That is why I tell you not to worry about everyday life—whether you have enough food and drink, or enough clothes to wear. Isn’t life more than food, and your body more than clothing? Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to him than they are? Can all your worries add a single moment to your life?

“And why worry about your clothing? Look at the lilies of the field and how they grow. They don’t work or make their clothing, yet Solomon in all his glory was not dressed as beautifully as they are. And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, he will certainly care for you. Why do you have so little faith?

“So don’t worry about these things, saying, ‘What will we eat? What will we drink? What will we wear?’ These things dominate the thoughts of unbelievers, but your heavenly Father already knows all your needs. Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.

“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.

Normal? To who?

While Gabriella and I were at the aquarium in California, we were there at the tail end of probably 20 field trip groups. There were kids everywhere with their matching shirts or buddies. The ticket lady told us by 1-2pm they all clear out, so until then we had to just deal with the crowds. Gabriella's favorite thing was touching the animals... bat rays, sharks, starfish, etc, but it was difficult to get to them with all the kids around. While we were waiting in line for the coral & star display, Gabriella and I were having one of our special conversations- the ones only her and I understand. One of the field-trippers, possible 8 or 9 years old, had been observing our conversation, staring the way kids do best. (the way kids stand there and stare to scope each other out cracks me up). When I gave him a smile, he asked me "is she retarded or something?"

I am guilty. I used to use the R-word in casual conversation, to substitute for the word stupid or dumb or ignorant. It was a bad habit picked up from peers and, like most others, never gave much thought to the reality of the word. It wasn't until I was faced myself with a child having a developmental delay (acquired, but nonetheless it is a delay) that I FELT the hurt in the word. I began to fear what Gabriella would face as she got older, not being able to talk like other kids. I could picture the taunts and words she would be faced with from uninformed kids. I learned my lesson on the R-word.

I kept this all to myself for about a week, until I saw on Twitter a tweeter called @endtheword and they were running a campaign to spread awareness and stop casual usage of the R-word. Then I read a blog entry from a woman, titled 'Reasons to not use the R-word'. I felt compelled to repost the updates they were putting online. A friend asked me if people really do still use that, and I mentioned our experience. I didn't want to make a big deal out of what happened with Gabriella, because I was dealing with a pain in my own heart about the day she realizes what that word means.

What did I say to that little boy? Sure, natural instinct would be to get angry.... but I'm convinced that boy didn't ask me that to be hateful. He asked it because he hasn't been taught what the word actually means, how it hurts and has heard too many people use it casually, so he saw someone different and felt it appropriate. I told him that Gabriella had an injury in her brain that took her words, and she was working very hard to get them back, but she was just like other kids. He just looked and said "oh." For that moment I hated that word. He used it because he has learned that the R-word can be casually used. Yes, being mentally retarded is a real condition, but it is not something people should go around using casually to jazz up a conversation. It would be like using the word 'cancerous' as a word substitution when poking fun. That's not funny, is it?

I had never intended for this to make it to my blog. I don't want to ever place Gabriella's condition over people who have things so much harder. Sure, Gabriella has a weak and dysfunctional arm, and she cannot talk properly, but she can more than partially recover with hard work. I have lovely friends, in real life and online, who have kids with physical or mental limitations that cannot be recovered from. I look up to those moms who care for those kids. A local friend, Sherry.... an online friend, Heather (who posted a wonder blog entry about explaining handicap to kids).... and so many more.... have become heroes in my eyes. To see the dedication to and positive outlooks on their kids with CP or Downs and other limitations reminds me of the beauty of being 'imperfect', yet 'perfect' in God's sight. And my passion for the R-word being removed as an everyday, casual word to replace other demeaning descriptive words is not just because I have and will face it with Gabriella, but because I can only imagine the pain other mothers feel when their child is taunted with it as well. When I think about Gabriella as she becomes a woman who will still struggle with her speech, I can only imagine the pain and depression she, or any adult with delays or handicap may feel, by overhearing such a simple word to the average person being used when it had debilitated her entire life and she had fought so hard to conform to 'normal' society and overcome her delay.

What if WE are all abnormal? Maybe, in God's eyes, that child with CP or Downs, or my daughter with a failing heart, are normal? Society has placed guidelines on what is normal, but what would happen if we all considered that a certain size or healthiness or appearance is not what makes you normal, but rather the way you live life and love people are what distinguishes people as normal or not? God created us all perfect to His design. I think it is our job to teach our kids, the society of the future, to respect that.... Parents, lead by example.

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell." Lance Armstrong

Thoughts on the waiting list...

February 11... I will never forget the date. Not only because it is my little sisters birthday... but also because that was the day Gabriella's new heart journey started. It came exactly 9 months, almost to the hour, from when we sat in that small room at the cardiology office and were told Gabriella needed a new heart- May 11, 2009. We were dealt setbacks with needing air transportation in August, Gabriella's stroke in September and months thereafter of recovery from the stroke. But finally, the day we once feared but now are ecstatic for, came.

In the early weeks of finding out she needed a new heart, her doctor told us Gabriella would have, potentially, a maximum of 5 years before this condition would take her life. He said it with much caution, as no one knew what to expect of this condition that children just do not get. Everyday we wait is a day closer to loosing her... it is just that no human knows how many of those waiting days there are. As these more recent visits have gone, I see Dr. Alhadheri's doubts in having 4 more years visual on his face.

We had so much fear in August, when we went for our intake visit to Loma Linda. It was still such a hard concept for us, with Gabriella being so visually healthy. To think of the surgery and the severity of what we were putting her through, we just couldn't be 100% at peace with it all. When she had her stroke in September, and were given a visual experience of how unhealthy she really was, we were given a wake-up call. These months of recovery and waiting, and watching her get worse, put us in a position this past week to go to Loma Linda for listing with excitement and joy.

The only way to ensure Gabriella gets to start school, experience recess, face peer pressure, win a competition, learn to drive, dye her hair odd colors, go to prom, graduate from high school, choose a career and pursue it, meet her soul mate, have or adopt babies... or even change the world- she needs a new heart.

In the very same way, another child will not.

It is impossible to have a single moment rejoicing in the memories yet to come without grieving in the moments another mother will not have. My heart is so full of excitement and happiness and in the same moment compassion for another woman out there I don't know yet. It is something I will never be able to explain, not on my blog or in person. It is a feeling that is just a feeling, and one that is only shared among others who have actually experienced it.

The most important thing to remember is that a child will not loose their life SO THAT Gabriella can live. Gabriella will live BECAUSE a child had to loose their life. It is all part of God's divine plan. Which to me means, it is okay to pray for Gabriella's new heart. It does not mean you are praying the death of another child. I find it my best advice to pray for God's timing and ultimate design. That, if another child does have to loose their life, that their gift can be forever shared and displayed in the life Gabriella lives. That the mother, father and family of the child who gives this gift can find peace and comfort, if in nothing else, that they spared another parent of that pain.

The day we get the call for Gabriella's new 'sparkly heart' will be a day our family expands. Whether or not we ever meet the donor family, they will be forever a part of ours and my debt to them can never be repaid. I will make it my focus in life to make sure Gabriella always understands the gift like no other she received.

I asked a friend of mine if she would like to write something, to share the 'other side of the story'. I have been blessed to know her, and know that God put her in my life for a reason. Here is what she shared for all of you to read.....

My name is Lara and I am a friend of Kristi. I am constantly amazed how people come into your life for a reason. I worked with Kristi for a very short amount of time, but became great friends. I am also a mother of a child that has gone home to Jesus. Her name is Avery and I now have my very own Guardian Angel. As a mother, we all want the very best for our children and the thought of losing one is nearly unbearable for us all. Trust me, it is. But...in the loss and over time, you become aware that your life becomes an example for others that are going through similar situations or hardships. For me, I have been blessed with Kristi and Gabriella. I unfortunately was not able to donate any organs of my precious Avery, due to severe internal injuries. BUT... I WOULD HAVE! I truly believe that the greatest blessing a grieving mother could get, would be the knowledge that your child saved someone else. What an amazing gift!!! The loss of your child will not go away and your gift will not bring her back, but I would never, ever, ever wish the pain of a lost child on my very worst enemy. What a wonderful feeling to know that you have spared another family that pain. God has a day and time for us all. Unfortunately, some are taken away before we believe they should be. But some, a very few, need help from another special angel so that they may live life until their time comes. Much love to you all.