Let’s celebrate.

The enormity of the day has fallen on my shoulders.

In my effort to “live in the present” and capture the greatness of 2013 for all that it is and will be…I have been enjoying every single second with my best girl and best boy.  I have relished in the party planning for Evan’s big day.

It is amazing how quickly time flies when at times during the past year it felt like it stopped multiple times…slowed down in agonizing seconds…minutes crawling along at snails pace.

I’ve been doing the normal birthday party prep.  Getting goody bags ready, planning games, buying candy…oodles and oodles of candy.

I’ve been celebrating my boy with every balloon purchase, toy give away buy, streamer bought.

Then…this week arrived.

I was called by his cardiologist to move up his heart ECHO (a sonogram of his heart) because of a scheduling issue.  It will be the first picture of his heart since his surgery…where we will see if what the surgeon did is working for my boy.

I was called by the craniofacial department to schedule his full cleft lip and palate repair.

I was sent texts, emails, Facebook messages by friends who can no longer make it to his birthday…the cold and flu season taking victim to each of my guests.  None of them wanting to put Evan at risk of getting sick.

The normal of the planning…the normal of our life….shattered once again.

It’s hard to live in the joy of the day when you are always reminded of the heart aches that surround your life.

I am trying to hold it together as much as possible.  Really just trying to be strong and joyful in the moment that is coming up.

My boy will be turning a year old in less than a week.  We will be singing happy birthday to my son in a couple of days….I’ll get to see him smash into his cake, wear his special party shirt, take loads of pictures..trying to capture the memories of the day.

I’m celebrating it in grand style…not just because of all he – we – have endured as a family this year.

I’m celebrating with such fan fare because less than half of babies with his heart condition make it to their first birthday.

I’m celebrating in such grandiose fashion because with his very special heart…only 85% make it to the next staged surgery…and of that 85%…only 65% make it to kindergarten.

I get this birthday…this milestone…I have been given this incredible gift of him just being here….today…

Every birthday I get for him…every year I get to plan a celebration of him being HERE….is a milestone that I promise to party hardy for not just him…but for others like him..who didn’t make it…for mothers like me…who didn’t get to buy the party hats, the noise makers…

But today…as I held Evan while he slept….all 20lbs of my chumba wumba laying on me…I was brought back to the purpose of his birthday as I felt his heart beat against mine.

With each “lub dub” of his heart and rise of his chest…I was reminded once again of the miracle that is before me.

The miracle of his beating heart…his life.

I don’t need to wait on January 22nd of every year to wish my son a happy birthday.  I don’t need an excuse to throw a party, buy a party hat, indulge in candy….because each day is a “happy birthday.”

Everyday.  Everyday I get to celebrate his birth…his life…..everyday that he is here and his heart still beats….I get to celebrate.

So…I’m inviting you…my blog readers, my Facebook prayer warriors, family and friends…to join me in celebration of not just Evan’s life…but life.

I’m inviting you on Tuesday, January 22, at 5:01 PM – when Evan took his first breath in this world – to stop and celebrate life…maybe your child’s, maybe your loved ones, maybe a friend…maybe your own.

Feel the life in your breath….the miracle of your beating heart.

And celebrate.

 

Comments

  1. This was so heart rendering, and as a Heart Parent, I can relate all too well. Your words that stood out and I live by that you described so eloquently – “Everyday I get to celebrate his birth…his life…..everyday that he is here and his heart still beats….I get to celebrate.” – I feel this, for I do the same everyday for the last 4 years, 2 months & 27 days — ((Heart Hugs)) my beloved Heart SiStar – continue to shine and many infinite blessings to Evans as we will add you you and your family to our prayers -=- On behalf of my Sun Kalani

  2. Tricia Stonitsch says:

    I will join you in prayer Lovie. Evan shares his day with my son Kyle and the anniversary of Roe v. Wade that marked my heart in 1972 (that we would allow babies to be murdered inutero). Kyle is my fifth of 7 children. That he was born on this day meant life came on a day of sorrow for me. I celebrate the lives of my children and all children. I pray for those already in heaven who never got the chance to live their existence on this earth. I look forward to meeting them all in Heaven. I lost my 7th child before birth and I know I will meet her in Heaven. Being a mother is God’s gift to us as women. Grow in the grace and wisdom of the Lord. Grace and great peace to you. God is greater than any diagnosis or word. He promises a long life that satisfies. My son Kris was healed from 2 heat attacks at age 21 that cause heart damage that would affect the rest of his life the doc said. No cause could be found. We took God at His word, followed the biblical steps for healing and in 4 days he was discharged with NO HEART DAMAGE….God promised no residual effect in his life. He had to walk that out over a year ad a half of enforcing the word in his life. He is now 28 healthy whole and nor after effects to hold him back. Jesus said our job is to believe and how we enforce or make known what we believe is to speak the healing words of His word instead of the prognosis or diagnosis Mk 11:23-24 is a start . Get a picture in your mind of Evan at each stage of growth that you EXPECT him to achieve after you have prayed to God to show you Evan’s future. He doesn’t have to be a statistic. Feel free to email me and I will coach you along. Tricia

  3. Beautifully said!
    I will celebrate with you …for the gift of life for Evan and Emma, for my husband who almost died on Thanksgiving, for my daughter who has had cancer more than two years but continues to fight it.

    I will celebrate you and Sarah, your husband and Scott, and the other heart parents who have spent far too many long nights leaning over the rails of hospital cribs.

    I will celebrate knowledgable, caring physicians and nurses, and the Great Physician Who guides them.

    And I will celebrate from Oklahoma the BD of your precious little man, as well as the lessons we have learned from him, from Emma, and from you, their parents. May God continue to be with you all.