Thank you all SO much for your prayers, comments and support. They are a lifeline. It is so surreal to be back in a place of desperate need again. Many of you prayed along with us during Georgia's open heart surgery.
How are we doing? Well, we are being buoyed by God, trying to focus on His promises and on filling the days with fun for the kids which helps to keep the worries at bay.
But it doesn't always work. Today at church I wept and wept, so much so that a sweet friend brought me kleenex in the middle of the service! We are surrounded by so many people who love us and are praying, it honestly feels like a great "cloud of witnesses", you all are helping us put one foot in front of the other. How in the world can I thank you enough?
Until right now, I have not had the courage to write out all that is on the plate with Georgia. Somehow seeing it written on the screen makes it so much more real. I would much rather get lost in her giggle than face it all. But, I think I need to know that I have done everything possible as her Mama to help her. She deserves that, deserves to have the people praying for her to know how to pray.
So, a few weeks ago I started noticing these funny times when Georgia would be drenched in sweat, pale and breathing funny. I would stay right with her and talk to her asking if she had any owies. She would respond back 'no' but she was arching her back and looking really uncomfortable. The pit in my stomach told me something was wrong but logically I told myself everything was fine. She had just had a clean bill of health at the Cardiologist in July, they said they didn't expect anything to come up at all with her heart and that we could come back in a year.
But Last Tuesday she had another one, the worst so far and I just knew something was off. So I called the Cardiologist thinking they would talk me down and tell me it was nothing, that I was a good Mom for worrying but to stop now.
But instead, I got a call right back. The nurse said that they were worried about arrythmias and that they were sending out an event monitor to us right away so that we could track what happens in her heart when she has one of these 'episodes'. I hung up and then a million questions rushed in. I had been told about arrythmias before and in kids with her repaired heart condition I had heard that they can be, this is the part that I hate to write, they can be fatal.
The next day I talked to the Cardiologist because it just seemed like this had to be wrong. But she confirmed that what they think is going on is probaby an arrythmia. There are two kinds and the kind most often seen (but very rarely in young children) with children with TOF can cause sudden death. She said that there was no way to know, no test they could run to find out for sure, they had to catch her heart during one of these spells. SO hospitalizing her would not work because you just cannot hospitalize a child indefinitely waiting for a spell to hit (she only has them about once a week). There are a few other remote possibilities, a different arrythmia or possibly seizures. She said that to be honest, it is in the back of her mind that this (the bad arrythmia) is what is going on.
So we wait...all weekend for the danged monitor (which should be here tomorrow). Then we get trained on this thing and wait for a spell to happen. It feels a little like Abraham and Issac to me. I am praying that she will have a spell that could cost her very life in order to figure out how to save it. I feel like Abraham stacking up the wood and praying that God makes a different way.
So, we just honestly wait/ life looks absolutely normal on the outside. Georgia runs around, usually naked because our little free spirit loves strip her clothes off, dancing and singing not a care in the world. And I have my CPR cheat sheet in my pocket just in case.
We will have this monitor for a month. We have no idea how long it will be before we catch one of these spells or what will happen next. We are talking to the EMTs in our town and the town where we shop and the kids go to school so they are aware and ready if they get a call.
So today in church, as the music started to play, the tears came. Big ugly buckets of them. But God has also been so faithful. He has brought so many friends along who listen, ones who spent the whole day with us at the zoo just being families together. At the zoo bathroom of all places I looked up and recognized a woman I had never met. She has a heart baby from China too and I had emailed and prayed for her little girl when she went through surgery. It was such a gift just to hug her and to feel like I had known her for years. To hug a friend who knows what it means to deperately pray for your child's very heart.
Then today, I was really unsure about leaving Georgia in Sunday school. Should she just be with us? What if soemthign happened. As I explained this to the Children's Minstry Coordinator she explained, "This is so perfect...the volunteer for Georgia's Sunday school class just happens to be an ER nurse today!" Can you believe it? Out of all of the Sundays...I knew that Georgia was in the best hands possible and I could go to the service.
And in the service...big tears everywhere, what song do they begin to play? Mighty to Save. This is the song that the Lord has used all throughout our wait for Georgia. When we knew she was getting sick and was still in China, this is the song that carried us through. I cannot count the Sundays that I stood singing this song and begging God to keep her alive so that we could go and get her. Then, as the plane landed in Nanning China on the day we would get Georgia...the song that came on my headphones...Mighty to Save. The night in Seattle when I drove and drove weeping that I could not hand my child over to a surgeon to open her heart, Mighty to Save came on the radio. The very morning of surgery as I drove into the hospital parking lot...again on the radio Mighty to Save. I have only heard it once at church since then and then here it was this morning!
I have no doubt that God is carrying us. It does not mean that I am not terrified, that I do not wish that I could wake up and have this all be in the past, that I am not begging every second for my little girl's life. I does mean that we are not alone. That I trust His character. That I do not have to be strong, or wise or put together during this time. That it is ok to be severly shaken and to have eyes that are sore and raw from tears. That honestly, whatever happens He has given us such a huge gift in our sweet Georgia Mei and we have her today. I do not know what tomorrow brings but I do know that God will never leave us. He promises to carry my weak frail so very afraid faith because there is no way to do it alone.
"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you."