Our daughter, Lily Grace, was born to heaven on June 6, 2010. She was diagnosed with alobar holoprosencephaly (HPE) and a rare arrangment of trisomy 18 (isochrome 18q). To learn more about our experience, you may want to start at the beginning. Read Lily's Story: from Beginning to End, which is one of the first blog entries on June 24, 2010.


He heals the brokenhearted and binds up their wounds. Psalm 147:3

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 2 Corinthians 4:16-18

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalm 46:1


Monday, September 12, 2011

Bless her heart

Ainsley had her follow up appointment with the pediatric cardiologist on Friday, and while we were hoping for news that the hole in her heart was smaller or even closed, we are trying to stay positive after learning that things have not changed at all. I suppose it is good news that the hole has not gotten larger or that there haven't been any further complications. Just when I catch myself feeling frustrated with all of the doctor's appointments or feeling sorry for our daughter having to endure the appointments, EKGs and the echocardiograms, I remind myself yet again that we are incredibly blessed to have her in our lives. I remind myself too that she, hopefully, will have no recollection of any of these appointments. She is just so little and so young to have this mountain to climb.

I mentioned a bible verse a couple of posts ago, and talked about my brother-in-law who used to sing "Never Let Go" in our church. My husband and I have been attending a different church for the last 2 years, and until recently, I don't remember ever singing this song there, but we have now for the last two Sundays. What an awesome reminder to me the week leading up to Ainsley's appointment that God never lets go of us, and another great reminder following he appointment that He is there through every high and every low, through the calm and through the storm. Even when the news we received was not what we wanted it to be, we know that she will be okay because God will never let go.

As I was taking my 3 year old to pre-k this morning, he started talking about heaven, completely out of the blue. Not even three minutes before he was asking if we could go for a bike ride and play baseball after he got home. Next thing I know I'm in the middle of a very interesting three year old train of thought:

Owen: "Mom, how will I get to heaven?"
Me: "When Jesus decides it is time for you to go to heaven, He will come get you"
Owen: "When?"
Me: "Jesus will decide when"
Owen: "Right now?"
Me: "No honey, not right now."
Owen: "What about Daddy?"
Me: "What do you mean what about Daddy?"
Owen: "Will he come too?"
Me: "When it is time for Daddy to go to heaven, he will go too"
Owen: "And you and Ainsley?"
Me: "Uh Huh"
Owen: "Is Mocha (our dog) in heaven?"
Me: "No honey, you just let her in before we left, remember? She's at home."
Owen: "Oh. What about that frog? Jesus came and got it and took it to heaven?"
Me: "Yes"
Owen: "If you and me and Daddy go to heaven, who will hold Ainsley?"
Before I could answer-
Owen: "And mom, I think Ainsley is too little"
Me: "Too little for what?"
Owen: "Too little to go with Jesus. So Daddy and I will go to heaven and you stay at home with Ainsely, k mom?"

He almost said that like he was excited about it or looking forward to that day, and I guess I am glad that he sees it as a positive thing. I realize that I could have used this conversation with him in so many other, possibly better ways. I could have talked more to him about Lily, his baby sister or our cat who passed away a couple of weeks ago, but I really wanted to let him take the lead on this one, and quite honestly, I didn't want to draw out the conversation any longer than necessary as we were just a few minutes away from his school and I hated to leave him on this topic. It was interesting for me to hear my son acknowledge in his own way, though, that Ainsley has her whole life ahead of her.

I am so excited to parent her through every stage and every mountain. We will continue to pray for the hole in her heart to close, but we know that God's plan and His timing are perfect. Ever since we said goodbye to Lily, I try very hard to open my mind and my heart to learn whatever it is that God wants me to. I ask Him regularly to show me His will and to give me the patience I need to see it. I know there is a reason that He has chosen to use our Ainsley's heart in this way. While we pray for healing, we will wait as patiently as possible for her next appointment in December, and my son, who has been singing "Never Let Go" with his Lightning McQueen guitar and microphone has been keeping my thoughts in check and my hopes high.