Tuesday, December 13, 2011

Life....throws a few curves, don't it? I'm angry. I'm heartbroken, devastated, anxious, and to be quite honest-just hate marfans.  Klaire, a precious little 9 month old, passed away Saturday night from complications due to marfans. She left her dad, mom and sweet twin sister behind, who, I just found out, was admitted into the hospital yesterday because of marfans. Ethan, an intelligent, brave 9-year old with marfans that we met at July's conference, is in the hospital with a collapsed lung, not breathing on his own, and is now dealing with many painful complications from it...all because of marfans. This is only 1 out of many, many hospitalizations that Ethan has already experienced in his 9 years of life. Because of marfans, little Brody bear is recovering from his first open heart surgery at the fragile age of 1. Danny, our other handsome little one year old from the UK has spent his share of time in the hospital as well because of...you guessed it---marfans. 
I desire with all of my heart to have just one day where I don't have to think of or hear the word "marfans". But that's not going to happen...ever again. I am going to continue hearing it ring loud and clear at doctors appointments, in phone conversations, in emails, on facebook, and in my own head. I will continue to see this destructive disease hurt, crush, and devastate people I love and care about. And I will see it manifest itself day after day in my sweet Emri's fragile little body. I really hate marfans. It's tough to keep a sunny outlook on life and maintain a good attitude while all of this is taking place. There are so many individuals so close to my heart that are all in pain; physical and emotional; because of this ugly disease. As of late, trusting in God's goodness has been a struggle to say in the least. I am overcome by grief, fear, and bitterness.
I often find myself tearing up when looking at a healthy, glowing child, just wishing and yearning that Emri could have that. I struggle seeing pictures of a newborn baby being cuddled close by his/her mom and just can't help but remember the horrifying events that took place after Emri was born. I didn't get that "perfect" birth experience. Not even close. Emri didn't cry when she was born because she wasn't breathing. Brett didn't get to cut the cord because they were so rushed to resuscitate Emri...because of marfans. It feels unfair. It feels cruel. But it's life. It's in HIS plan. 
As a mother with a child with marfans, I am struggling. I am hurting with all the rest of my special moms. I am praying that God gives us a break and lets us breathe. That He grants us His peace and gives us grace. That despite all of the horrifying events taking place, we can all lean on him and put our trust in His plan for our lives.  
Please pray for these precious kids and their brave mommies..



Jonah S.



Klaire and her twin sister Kylah
Our angel, Klaire
Our angel, Jonah

1 comment:

  1. Our hearts truly break for each precious little angel lost,and their families. Unfortunately, we know the incredible pain of losing a child. Our thoughts are with those that continue to suffer, due to this horrible thing called Marfans; to include your beautiful Emri.
    If there is anything we can do........