Tuesday, March 31, 2015

Diagnosis Day

One year ago tomorrow marks Lily's diagnosis day. It's hard to believe that one year ago we were getting stuff ready to head to Iowa City the next day to find out what the test results showed. I had read stuff online about SMA and in my mind feared the worst, hoping those weren't words we were about to hear. Here is a piece from my journal I wrote the night before we were diagnosed.

Iowa city appt tomorrow. Feeling nervous and feeling scared but trying to be positive. Knowing that God is in control and that He is bigger than anything that we could be faced with. Still the past few days have been harder and I have been thinking about it constantly and what kind of news were going to get. Ugh. Just want this wait of finding out to be over with. Still going to physical therapy in Waterloo and Lily has shown small steps of improvement (about the same). Oh that girl. I couldn’t love her more. Still, I just grieve for her every day, for those little things that she can’t do like kick, move her arms around, grasp, hold on to bigger toys, push buttons, etc. More than anything in this world, I want her to be stronger and to have strength in her arms so she can grab my face with her hands and for her head to be stronger so I can just prop her on my hip and walk around. Hopefully tomorrow will bring good things or at least a step closer to finding out what is going on with our sweet pea. 

It's hard to go back and read those words again and think about the fear and anxiety I was feeling that night and that next day. But it's also amazing to think about how we got through this last year since diagnosis. We received the worst news we could have heard, were told Lily had a terminal genetic illness (with no cure or treatment), and that most kids with Type 1 SMA had a life expectancy of up to two years of age. We were devastated. Sat in the speciality clinic in Iowa City with the neurologist and his nurse. Cried. Held Lily tight. Ugh. Thinking about that moment still makes me break down in tears. But...thinking about the fact that she is still here. That she will be TWO years old in August. That she is doing well. That she is the prettiest, sweetest little girl, and that for every day that she is here I get to be her mommy----that makes me happy, that makes me thankful, and that makes me feel so blessed. As I sit here crying writing this post I want to thank you-those who prayed, those who brought meals, those who visited, those who surrounded us in love and prayer, THANK you for your support. We would not have gotten through those following days without you. 

Looking below at the pictures from one year ago, you can see that Lily was such a happy, smiley girl and the same beautiful smile lights up our lives today. I am so proud, thankful, and full of joy for our blessing, Lillian Grace. And speaking of blessings, Lily became a big cousin today to beautiful little Hailey Marie Schaa, (proud parents Aunt Abbie and Uncle Michael Schaa). We are so thankful for this healthy, sweet little girl and Lily can't wait to meet her cousin! We love you guys! 



Happy Easter from our little bunny!!



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  2. Love you Jill, Levi and Lily. All three of you are amazing.