Hope for Emma's Heart: June 2012

This post was supposed to be on Father's day, however, we were out of town and when I got back, I went on the road traveling for work. So, tonight, I am able to finally sit down and put into words what it is like to be the father of a child with HLHS.

I, like many fathers, know the feeling of being blessed with a daughter. The smiles, the looks, the love that she shows me makes every single day, perfect. Emma, as you all know, has had a rough road. Watching her go through everything she has been through makes me, as her father, wish I could have taken her place. She has had so many things happen to her, so many experiences, that no child should ever have to go though. Yet, each day, when I come home from work, I receive a smile. Each morning that I am blessed with the ability to wake her up, I am met with laughter and smiles. I have asked myself so many times how my beautiful daughter, in spite of what she has been through, is the happiest girl I have ever seen. As her father, it has been tough. I am not going to lie. I have found myself in a room away from Sarah and Emma, crying, hurting, because of how much she has to go through. Now, is better than it used to be. I think what is the hardest thing now is the not knowing what the future may hold for Emma. Its thinking about the next surgery, instead of thinking about normal next steps for children her age. Its trying to grasp all the little things, all the giggles, and enjoy everyday without thinking to far into the future. Sure, I can say its unfair, that this life has not gone the way that it should have, but that doesn't change anything. Emma will still be my Emma, and I will struggle with all the those thoughts listed above over and over again. The journey that she is still on may be hard again or easy. What matters is, as her father, that I always love her and cherish every moment with her. Isn't that what all father's strive to do. I mean no one, in this life, is guaranteed anything. This journey that I have been on with Emma has taught me so many things. It has taught me important things in life. Sure, I have had times of weakness when bitterness and jealousy enter into my life. But through it all, I have been taught so many things by my little girl. She has taught me true joy doesn't come from your situation but from you. She has taught me to laugh more each day. She has taught me a greater degree of perseverance than I would have ever known. Patience, qualities of being strong willed. Things that would have taken me a life time to probably learn, or may have never learned. You see, it doesn't matter in the end whether life is unfair or not. What matters is realizing the blessings you have in spite of the strife. Its about cutting through all the bad to see the good in something. That "good" has blessed my life for the last almost 2 years, and Lord willing will continue to. God has truly blessed me, and as the tears stream down my face as I write this, they are not tears of sadness but of joy, because no matter what may happen in the future, the blessings that Emma has brought me, I could have never overlooked. Being the father of a child with HLHS is one of the most scary, sad, hurtful experiences you could ever go through, but if you cut through the negatives, you see all the positive aspects, all the blessings, and all the things that you might have overlooked or never understood. I would never trade my time, the time from when we conceived Emma until now and even Lord willing years and years into the future, for it is through all of this that I have seen God's, mercy, protection, power, love, first hand as he has watched over my beautiful little princess. To all the father's out there that may be reading this, and all the mothers reading it and who will share it with their husbands, father's lets never forget the important things, cherish everything, love deeper, and hold closer our little ones each day. They are truly blessings from above!

So now to an update on Miss Emma:

Emma is doing AMAZING in therapies. Sure she cries from time to time, sometimes all the way through therapy, but she never stops working hard. She is getting stronger each day with physical therapy and occupational therapy. On another exciting note, she is eating an ounce of baby food in around 10-15min which is huge for her! There are talks, if she continues to progress well with that, and starts taking more fluid by mouth, of making changes to her dietary regimen! Sarah and I are extremely proud of her! She has also discovered the art of waving which cracks us up. She not only waves when she sees us but also at times to get our attention. We even caught her, as we watched her on the camera in her room, waving at her birds that are above her bed! :) Many of you know how she would shake her head back and forth to rock herself to sleep, but now she shakes her head no and she thinks that is hilarious! We are so very proud of her, and yes we praise her every time she does any of the above! ;) She also is saying "mmm ma" and "momma" to Sarah ALL THE TIME! And yes, the next question is, does she say daddy or dada, which I hear is supposedly easier for them to say. The answer is yes, but not anywhere near as often as momma......... Somewhere along the line, she has turned into quite a little mommy's girl! I have turned up how often I refer to myself as dada around her and say it dozens of times around her hoping to offset some of the "mommas" and replace them with daddys! :) All in all, she is doing really really good!

Some specific prayer requests:
1) Pray for Emma's future.
2) Pray for Emma to continuing developing, learning, and growing as she is doing!
3) Pray for Emma to continue progressing well with eating and drinking so we can hopefully slowly work down how tube dependent she is.
4) Pray for us as a family to continue to have strength each day.

As always and this will never change- God is good, all the time. And all the time, God is good!

Daddy Scott