We learned today that Cora has been accepted into the heart transplant program at Stanford. They have been running copious tests since we arrived -- medical, psychological, you name it. Evaluations by every specialty team under the sun. Taking all the information into account, Cora was presented at the heart failure and transplant conference today and the team agreed unanimously to approve her.
Not sure exactly how I feel about this.
Last night, knowing the decision was looming, I worried so much that they would decline her. More than anything, as a parent, you just want more things to try. You want more roads, even if the roads are long, uncertain, uphill, and scary. The worst thing is the End of the Road. So I am immensely grateful for more miles of road in front of us, but I would be lying to say I was excited or thrilled about it. What I mostly feel is heavy.
I keep thinking that at some point in the not-too-distant future someone will take my child to an operating room and remove her heart. They'll give her a heart that is right now safely tucked inside another child. And after that, Cora will face a lifetime of heart biopsies, medications, and potential complications. But -- a lifetime -- at least she could have one. What can I possibly say or feel about any of this? Just put one foot in front of the other, I suppose.
Today I picked up Dominic and Cosette from Grammie and Papa's to spend the weekend with them. Somehow they've grown and gotten smarter since I saw them on Wednesday. In conversation, Dom used the expression, "at some point." My little college professor. What four year old boy says, "at some point?" Their little presences give me so much strength, but as I gave them a bath I couldn't help but think that Cora should be here. I think if she could just soak in a few minutes of that crazy laughter and goofy conversation, she would be better.
If you are out there reading this, I hope you will post a comment. Even if you have nothing to say. It makes me feel better to know Cora lives in the hearts of many. I picture her little spirit floating around with so many of you, seeing the world through your eyes until she can see it for herself. I picture her lightening your souls.
I really don't know what to say.....that's the truth, except we will all be here every step of the way and if we could try and make the heavy lighter we will do everything we can. We are happy for more roads , rooting for less bumps and the quickest possible route to the warm tub for Cora - so she can laugh and be a good ball with her big bro and sis! Hugs and kisses to you all!!!!!!!!
ReplyDeleteWe all pray for Cora every night at grace. We had been praying for her at bedtime, but to be honest, we don't always remember to pray at bedtime (Hey! It gets chaotic!). At the end of grace a few weeks ago, my son said "And God bless baby Cora." My daughter chimed in right after him, as did we. Now, every night, Cora is in our dinner blessing. The children also ask to see pictures of her, so keep posting them! With love from the Mile High -- H & the Crew
ReplyDeleteCora does live in the hearts of many - more than we could ever hope to know - as friends and family have shared Cora's story over these past months.
ReplyDeleteAnd now, you, Meesh, are sharing her story in such a precious, loving way, as only you could.
Your words tear at our heartstrings, and yet through all of it, we can feel your strength too.
You are a blessing to us, to Jay, to Dom, to Cosie, to Cora - and to all you touch through this beautiful blog.
We love you, Meesh,
Grammie and Papa
Yes, Michele, you are so right - our love and prayers are on the road with you, Cora, and all of your family. God certainly knew what He was doing when he decided that Cora should "land" in your family - the love and caring for each other that has been demonstrated throughout this difficult time is awe-inspiring! As we all know, prayer is a powerful thing, and people all over the World - through sharing of Cora's story by your friends to our friends to their friends - are praying for this precious little girl and her family. I've never known words to be so heart-wrenching and full of faith and hope at the same time, and I long for the day when I will read that Cora is safe and healthy - and going home to be as silly and goofy as possible. What a loved little child she - and each of her siblings - is! May God continue to bless you all with new roads to travel to all living happily ever after!!!
ReplyDeleteYour precious little Cora is with us every second of everyday and so are you Jason, Dominic and Cossie. Hope knowing we love you very much offers you strength and courage as you travel this rough and bumpy journey. Our prayers continue to the angels above for the ultimate miracle for precious baby Cora. Love hugs and kisses cousin Debbie, Flip& Family xoxo
ReplyDeleteWow you are great at expressing this ordeal it has to be so hard.I honestly cant imagine.Cora has been in r prayers every night. We hope those weights you carry are lifted sooner than later. Im glad that your other two little ones can lift them if only for a minute.Hang in there, we hear you and feel you 1200 miles away. Lots of hope your way and tons of love and strength to your baby Cora.
ReplyDeleteThank you for sharing what is an incredibly personal and emotional experience. We are all here, reading every word and sending love.
ReplyDeleteSo so powerful are you and the love that surrounds your beautiful family - by this alone, mountains can be moved. Sending all the love, support and faith I can muster to you and those that know you during this journey...you inspire all of us. xo
ReplyDeleteI've been following Cora and your family's story for several months through prayer requests from a friend of yours. Your words are so genuine. It's amazing what perspective your daughter's life brings. Sending prayers from just another stranger that your baby girl's life has now touched.
ReplyDeleteWe've never met, but I knew Jason growing up - our parents are friends. You and your family have been in my prayers since my mom told me about baby Cora. The strength that you have is amazing and inspiring. Your children are very lucky to be able to call you their mom. Thank you for allowing us to be a part of your life, though virtually, to take these steps with all of you. Know you are not alone, no matter what time of the day, there are people who have your family and your baby girl in their hearts. -Chrissy Conti Rodriguez
ReplyDeleteBless your heart. Bless Cora's heart. Bless the heart of her future donor.
ReplyDeleteJust started following Cora's journey. My son had a collection of life threatening birth defects, including ASD, VSD, and an aortic coarctation. He is now a rowdy 3 year old....lots of medical/health issues, but enjoying life!
ReplyDeletePraying for Cora and the rest of the family!
I'm a physician and a mom, so I both can and can't imagine what you and your family are going through. I'll keep you and Cora in my thoughts and prayers!
ReplyDeleteHi Michelle,
ReplyDeleteMarie sent me the link to your blog. I spent last night reading your last few posts and while I never did get to meet Cora, I feel like I know her already. I had to go back to the beginning of your blog and read from there.
All I can say is that I'm so very sorry. She will always be apart of your family and apart of you. She will always be with you and will guide Dominic and Cosette as they grow. I just know it.
Thanks for putting it all out there on this blog. I'm looking forward to reading it and getting to know Cora through it.