It's Grandma to You. . . .

Caroline has begun referring to my mom by her first name. Her name is "Nancy," so we have started to hear the name "Nancy" being thrown around the house quite often.

Why does she do this?

Well, we have a couple theories. Mark's theory is that when he said, "Thanks, Nancy!" to her a couple weeks ago, Caroline "parroted" Mark, and said, "Thanks, Nancy!" too.

My theory centers around the fact that Grandma is Caroline's Sunday School teacher on Sunday mornings. The other kids call her "Miss Nancy" and "Nancy" and Caroline, not wanting to miss out on anything her peers are enjoying--is just trying to fit in.

Regardless, when she walks past the picture of my parents which is sitting on my side table in the entry way of the house, she says, "Grandma. . .Nancy. . . Grandpa." I keep trying to tell her it's "Grandma," but I'm excited to see her making more real-life connections. Every one brings us a step closer to our dream of a limitless future for her.

And speaking of limitless futures. . . .

We met with our new friends today. Their baby girl, Leilani, was born on my birthday two weeks ago today. Leilani has an A/V canal defect which is affecting all four chambers of her precious little heart. She was born 5 weeks early -- and tipped the scales at nearly 7 lbs. So, she's a healthy little girl. But, she's a little girl whose heart needs to be fixed as soon as possible.

Mark and I got a chance to sit down with Pat & Kym, her beautiful and wonderful parents, today. They are tired. They are making treks back and forth to the hospital to see her. But, the part that breaks my heart is that the hospital where precious Leilani is staying has the most bizarre visiting hours for a newborn baby in a NICU. They can only be there two hours at a time -- and have to be gone for two hours.

So, they are weary, and discouraged by the fact that they want their baby HOME. I remember those days -- and fortunately for us -- there were only six days of traveling back and forth from home to Children's Hospital. And, I want to go on record saying that Leilani is NOT at our Children's Hospital. If she was there -- they would be able to spend as much time with her as possible (except for shift changes). And I am confident that their overall hospital experience would be exceedingly more positive than their current "digs."

Please pray for this family. Pray for little Leilani -- that her health will continue to improve so much so that they can bring her home. And pray for Pat & Kym, as they make this adjustment to life with a beautiful little girl. Pray for their strength, sustenance, encouragement, and strength to face the challenges that lie in front of them.

They have a phenomenal outlook about Leilani's future. They are very positive about the future when it comes to raising a child with Down syndrome. But, they are concerned about her heart issues--like we were with Caroline -- and until those issues are resolved, those concerns will always be there.

Mark and I are very grateful for opportunities that continue to be placed in our path -- meeting families with a new baby with Down syndrome. Each time, we pray that God's words would come flowing out of our mouths. We pray for clarity, wisdom, and discernment. We don't know whether we hit or miss the mark, but we rejoice that He's faithful and strong when we're weak.

So, that's about it from our Holiday weekend. Mark wrote a nice post about Memorial Day. I haven't really addressed it here -- but I am extremely grateful for the men and women who died in the pursuit of freedom. I am grateful to be able to speak and worship God however and whenever I wish to, without fear of punishment. . . and most of all, I am humbled by the sacrifices they made for me, and for the example they set for the men and women who are currently serving to preserve these precious freedoms.

Happy Memorial Day, everyone!