Today for Mother's Day Mariah gave me this gift:
Jonah Dare White
I am a newborn brother growing with each new day,
I wonder when I hit the sun light ray,
I hear the oohs and ahhs from everyone around me,
I see my loving wonderful family,
I want you to know that I’m Okay.
I am a newborn brother growing with each new day,
I pretend like I’m driving a national BMW racecar,
I feel like I’m the ping pong star,
I touch the love from my Father in Heaven,
I worry that I have little time with my siblings count seven,
I cry because I want to stay,
I am a new born brother growing with each new day.
I understand my Father’s plan,
I say you can always hold my hand,
I dream of the day I will see Him face to face,
I try to find the joy in my journey and it’s not easy in my case,
I hope you’re coming days won’t be gray as yesterday,
I am a newborn brother growing with each new day.
This was a special treat for me. Mariah has a way of expressing herself through poetry that I find absolutely beautiful. She had a poetry unit at school and had to write several for assignments and ever since I have been asking her to write one for Jonah. I love when hidden talents are found through the public education system of all things:)
Thank you, Mariah. Keep writing!
Jonah was born with Walker-Warburg syndrome, a rare form of Muscular Dystrophy that includes having very little brain tissue. Most babies with this syndrome live anywhere from a few hours to a few months. We don't know how long we will have Jonah, but we will LOVE HIM every second and trust God's timing. Welcome to the sweet moments of Jonah's life.
Sunday, May 8, 2011
A Poem for Jonah
My friend Karyn wrote this for us after Jonah's funeral. I love it.
Jonah
Thank you, Heavenly Father, for giving us our boy.
We miss him, oh so dearly, but he filled our lives with joy.
Ten weeks was not nearly long enough for us to get our fill,
But we trust in your eternal plan and have faith to do thy will.
Our Maori warrior is finally, now, standing firm and tall.
With Jonah fighting on our side, we know we cannot fail.
Please tell him now we love him, from his family tried and true.
Thank you for your gift to us, you lost a son once, too.
Thank you, Karyn.
I love it when my boys' influence is felt outside our family circle. It reminds me that even though their lives were short, they touched many.
Jonah
Thank you, Heavenly Father, for giving us our boy.
We miss him, oh so dearly, but he filled our lives with joy.
Ten weeks was not nearly long enough for us to get our fill,
But we trust in your eternal plan and have faith to do thy will.
Our Maori warrior is finally, now, standing firm and tall.
With Jonah fighting on our side, we know we cannot fail.
Please tell him now we love him, from his family tried and true.
Thank you for your gift to us, you lost a son once, too.
Thank you, Karyn.
I love it when my boys' influence is felt outside our family circle. It reminds me that even though their lives were short, they touched many.
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