There are some posts you never want to write. We sometimes have words in us that we never want to get out because once we do, once we see them on the screen or on paper, we know that it’s real.

This is one of those times.

I’ve tried to write this post for four days. Each time I try, I sit here and stare at the screen. I don’t want to fill the screen with words, thoughts, and the heavy news that is in my head and in my heart.

Last week my sister called me early in the morning. First, we never call each other at 8 am unless it’s important, we need to see each other, or are making plans (or plans are made and I’m running late). I knew that it wasn’t one of the latter two and I probably knew deep down why she was really calling but, I’m a denial kind of girl and not thinking about the reasons for her call worked for me that morning.

"Zoe’s been put on the heart transplant list," she said.

Here’s where I sit and look at the screen a little more.

My fingers don’t want to type. They don’t want to tell you the details or answer the questions, much like my sister has had to answer and repeat for everyone in the last two weeks.

But here it is; in plain sight, in all its ugliness and unfairness. Zoe is a very sick little girl. Zoe is only six, just 14 months younger than my Shorty; my only niece, cousin to my kids; light and heart of my sister’s life; her only daughter.

I won’t lie. I’m a little disgusted with the world right now. I know you don’t know Zoe like we do but she is the child that lights up a room when she walks in. Her mischievous grin starts in one corner of her mouth, spreads to the other side. Sparkles and lights go on in her big blue eyes when she’s truly happy or up to something.

I can’t tell you about Zoe’s condition because to me it sounds complicated but I’ve been given permission by my sister to republish some things she’s written and posted lately. In many ways, it’s better you read it in her words, the following tells what Zoe’s condition is and also what has led us to this place.

My daughter, zoe, is 6. She has cardiomyapathy with severe mitral valve regurgitation as a result. When she was 6 weeks old she got a strain of the echo virus and went in to congestive heart failure. She spend 10 days at Rainbow Babies & Children’s hospital in Cleveland, Ohio. 8 of those 10 days were in PICU and 4 of those were spent on a ventilator. She responded well to the treatment and was off her medications shortly after her 1st birthday. We continued to see the cardiologist and were going to be completely discharged from his care April of 2008. October of 2007 she had a relapse and ended up back in the hospital. More tests, more Dr visits and more medications again. After a year of Dr visits and a heart cath and biopsy her cardiologist felt we needed to see a transplant Dr at the Cleveland Clinic "just in case" he said. His worst case scenario has just become my little girl’s reality. Her heart isn’t getting better. We found out last week that transplant is her only hope. Sadly we don’t seem to have a lot of time because the Dr says he hopes to have a new heart for Zoe by Christmas. That’s less than 3 months away. Everytime I think about it my throat burns and I fight the tears. If she can be so brave then so can I.

I’m sorry if some of you are just finding out. A myspace blog is an impersonal way to give this kind of information, but it’s practical for me. I just can’t tell this story to 100 people and no one seems to be passing it on.

Let me get some people caught up first.Zoe’s cardiologist from Rainbow, Dr. Siwik, wanted us to see a metabolic specialist (he wanted to make sure her heart muscle was metabolizing energy efficiently) and a transplant Dr at the Clinic "just in case" he said. He was concerned that the stretching of the left side of her heart was getting worse. The stretching was increasing because the mitral valve (valve between the top-atrium and bottom-ventricle of the left side of the heart) but the valve is a little leaky due to stretching. So it’s a vicious circle and they were hoping the medicines would shrink the heart and we’d be good to go since the valve function is good, it’s just stretched out. He didn’t want us to get into a position where she became so sick that a transplant was out only option and we were running out of time. His plan was to do a work up if necessary and hope we never needed the transplant Dr. So we meet with the transplant Dr. (Dr. Boyle) and he says he’d like to push her medications and change them up a little and see if we can find a combination that starts to work better. Meanwhile we’ll start the transplant work-up "just in case". Sounds like a plan to me.

That brings me to where we currently are. We saw Dr. Boyle last Thursday. He did and Echo and an EKG and drew blood for the tissue matching. He asked how Zoe has been. She’s tired and the upset stomach that landed us in this mess last year is becoming an issue again. He said that based on her echo and how she’s feeling that he wants to proceed with the transplant. He feels that we have very little time based on how her condition is progressing. He also feels that doing a transplant now will have 3 benefits: her memory of the transplant will be less, she’s young and that will assist her recovery and she’s fairly healthy which also will greatly assist her recovery. He says that he in the next few weeks we will have more meetings with him and start meeting the rest of the transplant team. Here’s the kicker. He hopes to have a new heart for her by Christmas. Yes, I said Christmas as in this christmas. That’s less than 3 months away.

Muffin’s christmas list now consists of:

Polly pockets, littlest pet shops, books she can read, some adult teeth to replace the 4 front ones she’s missing and a new heart.

Honestly, I’m not sure how my sister is doing this. If it were me, it would be a struggle just to get out of bed, let alone put on a brave face. I’m not strong like that and right now I feel about as helpless as a person can get.

This isn’t one of my better posts, I know. But when I sit here and think about what my sister is going through, what Zoe must be feeling and my nephew, Zoe’s big brother must be experiencing; I can’t express it. Christmas isn’t far off. It seems like this entire year has flown by. I’m praying for the days to slow down, I’m praying that the thoughts in the backs of our minds don’t come true. I’m praying that Christmas brings Zoe everything she needs, her polly pockets, grown up teeth, and a strong heart that will grow to a ripe old age with her.

The one way I know I can help is to pray and ask you for your prayers, but I want you to meet her too. I want you to know a little of the Zoe we know. I want you to love her like we do and give my sister the strength she needs.

This Saturday, October 18th, I will be doing a live streaming video for the Babyspot Chief Mom Officer Chat on Ustream.tv. You’ll meet Zoe and she’s going to tell you about herself, make a Halloween photo frame for the fridge, and probably ham it up. My sister has told Zoe about being on the Ustream broadcast with me, (wanted to gauge her reaction to being on the Internet) and well, don’t you know… She’s thrilled. She knows exactly what she wants to tell anyone who’s watching. My sister is going to be there too (cause I won’t do it without her there), and she will be in the chat so if anyone has questions she can answer them. I think I will be too busy with Zoe to do the chat too.

You can watch the show here on Saturday evening at 5:30pm EST.

I am planning on setting up a fund for Zoe because I know this is a hardship my sister isn’t prepared for. Trips to Cleveland Clinic are expensive. The cost of gas, the lost time from her work (when she’s almost run out of vacation time already), meals while they are at the hospital are just a few expenses I can think of off of the top of my head. I will have more information on the fund hopefully next week for anyone who is interested in making a donation.

I’ve joined Youdata.com and my earnings from that will be going to Zoe from here on out. No one has to donate, or should feel obligated to but I’ve been amazed by the support and generosity from the blogging world on more than one occasion and believe that by just telling by telling you, our prayers are being listened to.

The only thing I ask from anyone right now is to pray, link to this post and ask your friends to pray for Zoe and my sister. Tweet it on Twitter, stumble it and JUST. PRAY.

Thank you for coming back! Please take a minute to tell me how I can improve your experience here by contacting me. Thank you for being a loyal reader!

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