Thursday, July 11, 2013

I am going to begin with Emri's latest echo results since I have not updated the blog yet on what they were. Here is my facebook post after the echo.

"One of those days that we just don't know quite how to react. Emri's aorta grew 1 mm. Doesn't seem too significant...but it is disappointing. Because the aorta is getting bigger, Emri's aortic valve is now leaking along with her mitral and tricuspid valves. Mitral valve is now in the moderate category instead of mild. Thank you for all the prayers. God is sovereign. Its just tough to look at my sweet girl and know that there is something so serious going on inside of her constantly moving little body. Next echo is in a month at the NMF conference in LA with Dietz."

So there it is. More leaking, more growing, and quite a few more tears involuntarily falling down my cheeks.
I oftentimes begin to think too much---especially after appointments like the last. What if, what if, what if?? My body begins to react in ways I don't desire it to. I start to shake, my muscles tense up, my heart pounds, I begin to breathe wrong and my fingers get tingly, my stomach starts to hurt, I feel nauseated...and on it goes."God calm me," I pray so often. "God, this is in your hands, you had this all planned out already."

Emri's physical limitations  and extra equipment (walker, feeding tube, glasses, braces) are beginning to separate her from other kids her age. Emri and I have been going to Vacation Bible School this week and it has never been more clear to me that she is now looked at as "different." She walks around either on her knees or with her walker. She has a feed going half of the morning and consequently must haul around her feeding backpack. She has been asked about her tube, her walker, why she walks on her knees, why her fingers are so long, why she can't run...etc... all in 3 days. I know right now it hurts me more than her...but I am beginning to notice her put things together. When Emri got asked why her fingers were so long I noticed her glance at her fingers...the fingers she usually holds out proudly to show off her sparkly nail polish. She put out her hand to balance on another little girls shoulder and I saw the other little girl brush Emri's hand off quickly and look at her like she had done something wrong...other kids seem to be a little frightened of Emri...just don't know what to think. I knew it would happen...but I can't even tell you how much hurt I am experiencing as her mother realizing that it's starting...she starting to understand that she isn't like other kids. I am starting to notice that when Emri feels left out or insecure she starts acting out and not listening to me. She's hurting too, and it. kills. me. 

I have often thought of this trial as one that I am meant to count as joy as it says in James 1. But lately I can't help but think of all of the instances in the Bible where someone's child is sick or dying...the parents are always in desperation mode. The love a parent has for a child is such a deep, indescribable love...when the child is hurting, sick, dying, dead...the parents hurt seems to be beyond any other kind of hurt. It's just how it seems to always go. How do I count this trial as joy when it is on my little girls' behalf?? It seems beyond impossible to least right now. I know I am growing in the Lord, I am confident that I am in a better position to help, talk to, and cry with other moms in a similar situation, and I know that I am learning to give up all control that I, for some odd reason, think I still have as mine. These are all good things...all steps in the right direction...but joy?

Emri has often been described as an old soul. She has had to deal with so much already and she understands more than she should. Lately she has been crying when we have to hook up her feed and give her medicine in the morning. Brett and I have had to explain to her that if we don't give her what she needs, her heart will get too big and she would have to go back to the hospital. I have begun explaining to her that she has marfan syndrome and it makes her body weak, but that God makes her strong. When she is practicing walking, she knows that God is helping her be strong. We have been teaching her songs to sing when she feels sad or scared. We want her to know songs like "Cast all my cares", "when I am afraid", and "Thy word", so that when she is in scary situations she will have the soothing and comforting words run through her mind. These are all things I wouldn't necessarily put as a priority with a kid lacking health concerns...but with Emri, all I can do as her mother is teach her to put her trust in God know that He will never leave her.

Here it is. I am in physical, emotional and spiritual pain...I am writing now because I need to. I am so stretched thin and so exhausted--but know it is temporary. I will forever proclaim my love for the Lord and I will never blame Him or shake an angry fist at Him because I KNOW that I deserve death as a sinful human being. I can always have joy in this...that this life, here on earth, will be over in the blink of an eye. Those who are justified and sanctified through Him will be glorified in heaven....and THAT will be pure, untainted JOY. There WILL be a day of NO more tears, no more pain, and no more fears. Nothing can put a smile on my face faster than imagining Emri, with no more marfans, RUNNING as fast as she can without her braces, SEEING the face of our Lord and Savior without her glasses, and standing to worship our BEAUTIFUL and MERCIFUL Savior without her walker. And I will be there with her. THIS, people, is what it's all about.