One Month...

Our precious one is now one month old! So much has happened this last month, but I especially want to share the victories! She had her heart echo done and they only found a pinhole size hole in her heart. We haven't met with the doctor yet concerning this, but we believe that means just a watchful eye and no surgery nor medications. The other victory comes with her ability to begin nursing!!! She has the strength now to latch on for an average of two minutes. We are so proud of her progress and hope to soon be nursing full-time. She has gained weight to about a 7.9 pounds and has grown 1 1/2 inches. I'll post a more recent picture when I can.

gift packages

I love a beautifully wrapped package. One can browse the aisles selecting various colors, stickers, twirls and stuffings to make the perfect presentation. I am in awe at the gift packages God brings into our lives. His creative presentations keep us on our toes, and we can never know what to expect. Our huge suprise of Lylah has brought with her many small gift packages too! This past weekend we were blessed immensly by the company of another like-minded family whose daughter of 3 years has Downs Syndrome. Of course, there were eight other children who delighted us as well. It was one of those experiences that was so refreshing, I just keep replaying the conversations and admonitions given to us. This family truly has walked in the presence of God and one can feel His presence within their home. Not only did we talk for hours, there were games, great outdoor fun and incredible food. The evening came to such a peaceful closure as children shared songs on instruments and scriptures they had memorized. Most amazing was watching their daughters quote the entire book of James! The mother reminded me of another very dear friend of mine in Florida...very gentle but honest in her leading. We went away inspired once again to become very consistent with our children, promtly training and always loving. The daughters sent us away with wonderful handiworks they had made for the baby....blankets, booties, burp rags and doilies. Oh to be such a refreshment to others is my dream for my family!!!! In what ways have you refreshed someone today?

Please God, hold the hand of my friend too...

Dearest God,
Your child and friend of mine is now facing her last 2 weeks of life. She fought her battle hard and always with a smile that gave testiment to your great joy and strength. And now, you have chosen to say it's over. You have chosen to tell her she was so faithful and now it's almost time for healing and rest. Bless her two small daughters with inspiration to carry them through a lifetime without mommy. Bless her husband with strength to face the many lonely days ahead. Why must the journey be so hard?

Hold My Hand Because I Can't Hold Yours

For those parents who have been blessed with children with disabilities, I'm sure you can understand what I'm about to share. For others, these thoughts may seem foreign or even wrong. However, the feelings and thoughts are real and by sharing them I gain perspective as you will see as you read.
Sometimes I find the connection hard to make. I look in her eyes and wonder if she even realizes I'm her mother. I've done enough research to understand the delays in development she will face. I won't even hear the words "mamma" or "dadda" until her speech development begins to work itself out. Some of these children are never able to speak clearly. For so many people, hearing the words "I love you" solidify relationships. She doesn't even realize. I try to hold her hand. She can't hold mine. Her muscle tone is so weak, she can't grasp my fingers. For some, physical touch solidifies a relationship. She doesn't even realize. I want so bad to feel a connection, she doesn't even realize how helpless she is. And for the parents of severely handicapped children, how do you find the connection when they aren't able to connect? And then the Lord gently reminds me. We are all handicapped. Spiritually handicapped. The condition?...Sin! Sin cripples all of us. We suffer varying degrees of difficulties with sin that so easily entangles us. And we don't even realize. God wants so much to hear us say "Abba". But we dont, and we don't even realize. God wants so much to hold our hands. We can't. Our sins make us so weak, we can't grasp our fingers around his. We don't even realize. God so longs to solidify a relationship with us. He wants to feel so close and connected. And yet, we don't even realize. Thank you for showing me through my precious child how you long to be close to each of us.

our button at 2 weeks