Day 38 - My life song

Tristan had another rough night. His apnea monitor went off 5 times and he was fussy from about 3:00-5:00 am. He did have a better day today and he is now at 25 ml of formula, we've come a long way since he was born 38 days ago, he was only at 10 ml then - he should really be gaining some more weight soon. The excitement for today? We made it through yesterday, our first official "back to normal" life"! Although I really miss the mornings of laying in bed with Trayc and all 3 boys between us, getting up to eat breakfast at whatever time we want, spending our days as a family of 5 enjoying every single moment and having Christmas nightly, I guess it was good to begin getting back to normal, after all, we've done this the entire month of December and 7 days in January! When Trayc got home from work I immediately left and took Tanner to choir, it gave us one-on-one time for an hour. He was so excited when we pulled up at church and as he opened the door he smiled and said, "Bye mom, I love you!", seeing his excitement was definitely worth it because this was something Tanner was doing, not Tayden and not Tristan so he got all of my attention, all 100% of it. I sat in the car and waited on Tanner because I was not dressed for church and honestly just needed the time ALONE to think, to pray and listen to music. I listened to my favorite CD called Look Up, by the group Evidence. There is one song, in particular, that has deeply touched my heart since August. Let me explain. If you read our blog on August 15th you know the devastation we felt as the "high risk" doctors gave us the news that our little boy had T-18 and was considered "incompatible with life", our hopes and dreams for our little boy's future were crushed and we had no guarantees that he would even survive until December, as per statistics. When Trayc and I got in the car that day we were both crying and we held each other's hands, no words were said, after all what could be said in those moments, we were speechless! As Trayc turned the key to start the car the CD player started with the next song. The song was one I had listened to for months prior to that day, so I've heard it 100's of times, sung it 100's of times but I've never truly HEARD the words, if you know what I mean. As we drove home the song was playing and I HEARD EVERY WORD in a way I'd never heard it before - what a song, what words, what timing!!!! As I listened to the song on that very devastating day I told Trayc, "That should be my life song now, like my life verse?" I don't know, I've never heard of a life song, I made it up in that moment because the song was exactly how I was feeling. In the beginning I would literally cry every time I heard and sang the song, eventually it became a prayer (that I would sing to the Lord) when I didn't know how else to pray and now that Tristan is here it has become a song of thankfulness to the Lord for allowing us this time, and I sing it as a promise of obedience to Him as I say "whatever pathway You should choose I will see it as dry land!" To me this means that whatever way the Lord chooses for us and for Tristan's little life, no matter how long or how short, I will accept this as His plan for our lives. I hope as you listen to this song, you will HEAR the words, it will bless you and touch you, as it not only applies to me, a mom of a new T-18 baby, but it applies to every person in a difficult situation, someone faced with the uncertainty of tomorrow or just someone facing the normal trials and tribulations of every day life:

10 Open The Sea.mp...

OPEN THE SEA
(Written and sung by Amy Henning)

The Israelites faced a sea before them
A mountain on each side
Pharaoh's army was in pursuit
There was nowhere for them to hide
Then God opened the sea; did away with the enemy
In a mighty display
If He did it for them so long ago
Will He do it for me today? I Pray

Open the sea, make a way for me
I'm holding to Your hand
Whatever pathway You should choose
I will see it as dry land
Wherever You lead me, I will go
Holding to this truth I know that
You can open the sea

Sometimes my sea, it overwhelms me
I want to see dry land
Waves of doubt and fear rush in
And I struggle to understand
Then You take me right back to the edge of the water
Reminding me of before
And in that moment I know Your heart
And I cry out with faith once more

What makes this song even more special to me is that Trayc and I grew up at church with the guys of this group, Evidence. Tim Henning, Kirk Kirkland and Trayc sang in a high school quartet together, we went to Nashville in November 2006 to meet their wives and we are still friends with them today. They have pursued their dream to the fullest, the same dream Trayc and I have always had - we just never made it that far. We feel so blessed to be friends with The Hennings and The Kirklands and so thankful they are using their talent to reach others for the Lord through their music and bless hurting people like us. If you would like to hear more of their music please visit their website at www.evidenceministries.com

To Amy Henning: Thank you for writing this incredible song that has touched my heart so much during this time in my life, for your sweet emails, your constant support and for your friendship. Also, thank you for allowing me to use your song on my blog to help encourage and bless others while on the Trisomy 18 journey.