This morning, we made a zillion phone calls trying to connect with specialists for when Annalise comes home. I was transferred 8 times to make a single cardiology appointment!
Our Annalise has Cornelia de Lange Syndrome. We've known about it from the start. We had never heard of it until we connected with another adoptive mother that was advocating for her, desperately hoping to help the agency find a forever family for a sweet child. This mother also adopted a child with CdLS.
We researched.. we prayed and we sent our homestudy out. We've had so much peace about her. But we need to get things set up so we can transfer her care. So we called and got some appointments scheduled.
We also called the Children's Hospital of Philadelphia (CHoP.) They have a Center for CdLS there so we will take her there to have specialists familiar with CdLS help us make a game plan so that she is getting the best medical care available. Our specialists in town will use that information as a guideline.
I've hesitated a bit to post about CdLS on our blog. We've mentioned it to a few friends who have all been amazingly supportive. I hesitated because I want people to see her for her, not just see her CdLS. Please forgive me for not sharing sooner.
When we spoke with the girls about Annalise.. we told them that she was going to look a little different than what they were expecting. She has two fingers on one hand, and one on the other. She has no radial bone in her arms. BUT before I could say anything else, Lainey interrupted me and said "But Mama... she is still fearfully and wonderfully made by God."
I swallowed hard, blinking back tears and told her yes, that she is still fearfully and wonderfully made. And then they ran off to play.
I wish the whole world could be so accepting. I know that people may stare. People may ask questions. We get that. But we've also fully embraced Annalise and just want the very best for her. We want her to be included, embraced and celebrated.
After our crazy phone calls with Bran on one phone line calling one office and me on the other phone line calling a separate office yet trying not to schedule things at the same time on the same days.. and after explaining for the 550th time that the earliest we can take her to be seen is September because she isn't with us yet but that we don't know for sure what day she will be here either... we packed up the kids, got in the van and left!
We went to Sonic for Happy Hour. Ya gotta love half priced slushies and sodas.
We turned the praise music up. I put my sunglasses on and spent time enclosed with 5 of my favorite people in our van. We thought about Annalise. I prayed as I watched the country fields blur past my window.
It was peaceful.. and another day passed which means we are one day closer to visiting Annalise and ultimately bringing her home.
Father, sowing Your Word into the hearts of my children has already returned fruit! I'm so thankful that You've prompted me to teach my children to memorize Scriptures. Please continue to look over Annalise-- prepare her heart to join our family soon. Give us strength as we count down the days before we meet our third princess. We so desperately want to hold her tiny body in our arms. Lord, help us to work out the logistics and order our steps so that we can transfer her care. I'm so thankful that I've been in contact with other parents that are parenting their special blessings. The wisdom that I've gained from them and the Foundation for CdLS has been so incredibly valuable. We love You and praise You. Amen!