1. Please be patient with us. The outpouring of love and support has been overwhelming and has carried us. I mean that quite literally - your displays of strength and love have made us stronger. Thank you. With that said, we cannot possibly respond to all the calls, texts, and messages - not yet. I know you understand, but I still feel the need to say that we hear you and feel your love even though we can't respond to everyone individually. And, let me be clear: please continue to contact us - we need to hear from you, but you might not get a response.
2. At this time, please don't suggest other forms of treatment, alternative strategies, or whatever other ideas you may have for getting Ava better. We know your intentions are good, but I need to make this boundary clear. We are so thankful to be at the best hospital for kids in the world.
3. I'll be posting on this blog as often as I can. Those of you that know me personally know I'm a writer, so this is the best format to keep up with us. Share this link on fb, send it to others, and spread the word. We won't be sending out many group texts anymore, in general.
4. Our people have been very generous with our family and I definitely do not have the words to describe what that has meant to us and how it enables us to be fully present here, for Ava. Someday, I'll thank you ALL individually, but for now just know that we are so incredibly moved by your support. Thanks for understanding why you haven't received a thank you note yet.
5. Ava is loving having an instagram account- previously, our kids didn't have social media. She reads all your comments and smiles the whole time she reads. Keep those coming. That will be a space for photos and encouraging words, focusing on keeping Ava's friends/family connected to her.
6. Please do not share the story of your friend/family member that didn't survive their battle with C------. Not to us, not right now.
Thank you all for caring about Ava and for loving our family so well.
You’ve got it friend. You are so brave and so wise for giving clear expectations and boundaries.
ReplyDelete-Roxanne
#2 🙌 You would not believe the things that were said to my other friends that are in your shoes. And by family 😥 Glad you are staying your expectations!!!
ReplyDeleteI don't know you personally but know Pràyers are coming your way!!!
ReplyDelete