Monday, April 8, 2013

It’s All About Perspective

This past Saturday was the first annual Hearts and Heroes picnic.  This picnic was put on by the HeartCenter at Children’s Medical Center. All children who had heart surgery in the last two years were invited.  I was honored to sit on the committeefor this event due to my participation in Mended Little Hearts of Dallas. The Heart Center staff worked tirelessly to make this a fun event forthe heart heroes and their families. We could not have asked for a more gorgeous day on Saturday.  We got everything ready to go onSaturday morning and began welcoming some familiar faces to the picnic.  This is where things got interestingfor my little family….

You see, Emma does not care to be around a lot of people,especially people she does not know. But, before I get into the details of Emma’s picnic experience, let megive you a few examples of what the title of this blog is all about….

Truth: Emma is two and is not mobile in any way(not crawling, scooting, walking, etc.
My Perspective: Emma spent a year of her lifefrom birth on in the hospital. Emma suffered with hypoxia (low oxygen levels) for a long time and beingintubated for ½ a year.  EMMA ISALIVE!

Truth: Emma becomes easily overwhelmed withpeople and situations in
which she is unfamiliar therefore, sheshuts down and cries a lot.

My Perspective: Emma has been poked and prodded on her entire life, but nowthat she has been away from the hospital for awhile she prefers her bubble thatwe live in most of the year therefore, anything outside of that is scary toher.

 Truth: Emma is classified extremelydevelopmentally delayed.

My Perspective: Emma is a happy little girlwho has been through more in her little life than most will go through in theirentire lifetime.  No, she is not a“normal” two-year-old.  In fact, Iwas reminded on Saturday that she is really behind in heart kiddo standards aswell.  However, I am trying my hardestto not put Emma in a box. 

Truth: It is EXTREMELY hard to watch Emma not enjoyingthings that I think children her age should be enjoying.

My Perspective: I fight the urge to push her to "like" situations that I think she should like.  I want normal for her.  I want her to enjoy the same activities that other two-year-olds enjoy.  Running around acting crazy....I fight this inward battle on a daily basis.  

So, back to the picnic.  Emma recognized a few people and gave them smiles; however, the outdoors made her allergies act crazy.  She did not enjoy the windy weather.  She did not enjoy all of the people coming up and trying to touch her.  Emma broke down and cried and cried.  She wanted her mommy and I was trying to run the Mended Little Hearts table.  All of those factors made for a very cranky baby (come to find out she is also cutting two molars).  She did not get her picture taken for the Heart Center bulletin board or put her sweet little thumb print on the painting.  She did not play games, or run around playing with the other kids.  If I am being honest, this was hard to watch.  I can make excuses all day and say that it doesn't bother me, but it does.  I am working on these thoughts.  I am working on accepting Emma for who she is....having no unrealistic expectations...and being truly thankful of who she is today because you see, as soon as she got home she started smiling, laughing, and being the sweet natured little girl that we love so deeply.  And more importantly,  Emma is HERE!    

My little family at the Hearts and Heroes Picnic

MLH of Dallas Coordinators at our table

This CMC Heart Team is Phenomenal!
They gave of their time to show these kiddos how important they are.  

Thank you all for being a part of this journey with us.  Thank you for bearing with me as I learn how to live our new normal.  Bear with me if I act frustrated or disappointed in situations in which we are around "normal" kiddos and Emma is not able to participate.  Pray for us to embrace Emma for who she is, and what she is able to do.  

As always, God is Good!  All the Time!  All the Time, God is Good!

Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matt 6:34 NIV

I can do all this through him who gives me strength.  Phil 4:13 NIV

Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.  Isaiah 40:31 NIV

Some Prayer Requests:

1. Emma is still dealing with significant pulmonary issues and will see the pulmonologist on April 16th.
2. Emma will get her scoliosis brace on April 16th as well barring her pulmonary issues subside.
3. Emma is not participating well in therapy, so we will be trying new tactics to get her want to participate properly.
4. Emma will see her cardiologist and nephrologist this month as well.
5. Pray for all of our other heart buddies fighting their battle on a daily basis.  


See, here is that sweet smile.

Emma's Heart Hero Cape!

Emma in her cape and picnic shirt.  She is happy, happy, happy now that she is in her environment.