Thoughts

As the dust settles from the latest news I find myself trying to collect my thoughts and emotions enough to write something that makes sense. On Tuesday we were given the news that our sweet Koralyn actually has Hypoplastic Left Heart Syndrome, a much more severe defect then the original AV Canal diagnosis.

I went in on Tuesday Morning nervous yet excited that the day had finally come to see a more experienced doctor. I had hopes deep down that she would waltz in look at the baby and say something like, oh that first doc was mistaken, the problem is small and can be fixed in a jiffy yay for you! Now go home and enjoy your pregnancy! It was a shocking blow to find out that the news was in fact worse not better. The fetal echo took a long time that morning and the tech pressed down on my belly so much, for so long and sometimes hard that it is still sore today. I watched the screen and the baby and also the techs face for clues. Several times she seemed to sigh and grimace and I got worried. She like all the others, was having an extra hard time getting the images she wanted. She finally finished and told us the doctor would review the images and be in to talk with us.

About ten minutes went by and Dr. Roten came in, I had looked at her picture on the Internet so I knew what she would look like and had also heard from another CHD (congenital heart defect) mom that she was very kind. She was indeed very kind. She started out by asking about our previous diagnosis and then told us that the baby in fact had HLHS. The first question out of my mouth was, okay is that worse or better? She sighed and said, well it depends on who you ask. Some parents think it is better because the risk that she has a chromosomal defect is almost non existent but the defect itself is much more rare and more severe. I blurted out that I would take the old defect and a "special" baby over this! She then went on to explain the logistics of it and what we could expect after Koralyns birth. Let me tell you, the picture is not a pretty one, very murky and dark with many unknowns waiting for us.

After the appointment I felt as I did a month ago, shocked and not sure how to feel. I knew this was not what we were wanting to hear, not what we had been praying for, but again I KNOW God knows and made our sweet Koralyn. The pain seemed to come on much quicker this time and I woke up on Wednesday morning sick and overwhelmed. I can honestly tell you that the last two days have been some of the hardest in my life. The fears are raging at my door and the peace and calm have gone for now, I am sure part of this is due to the fact that I am sick physically, which always complicates even the best day not to mention some of the worst!

I am thankful for a husband who reminded me on the way to the car on Tuesday that we need to remember all hope is not lost, God has a plan and he will get us through whatever is coming. I love this man, and know he is right, but you see I am a worrier, always have been. So right now the only prayer I can muster is one of fear, telling God how scared and overwhelmed I am, asking him what is to come, how have our lives changed what will happen to us, our boys, our finances. I know he hears me, I know he knows me, I know he doesn't mind giving me this time to fear and grieve and be irrational. I also know the haze has to pass and I have to find my trust and peace in him if I am going to make it through all these unknowns; months of waiting and wondering, months (hopefully) of juggling hospital and home and kids. I say hopefully because there is a chance our sweet Koralyn won't make it, this is utterly terrifying to me, and I will be so greatful in the midst of the chaos to juggle instead of plan a funeral with a tiny casket and little pink flowers.

Is any of this making sense? Probably not, thats okay my mind is jumbled and I needed to be honest and tell you all the ugly truth of it. Some random thoughts that have gone through my mind:

Seeing other pregnant moms is hard for just a moment the pain hits me in the gut and I wonder about their sweet babies. Seeing people that don't know, like the lady in the elevator yesterday who smiled and said, "two boys and another on the way" and I smiled and said, "yes and it is a girl" like everything is normal and fine, knowing it is not. Vacations, now this may sound funny and a bit insane under the circumstances but I am being real here folks. You see I love to travel, our family vacations are a highlight in my year, I love to plan them and I love even more so to take them. I have had many thoughts in the past two days about our freedom to go anywhere and do anything and eventually take our boys on a mission trip. Our long car rides across America, our stays in tiny hole in the wall towns, the mountains, the hikes, the adventures. I feel this is being taken from me, from us. There will still be vacations of course and we can still do missions just on American soil, but I feel our "freedom" has been limited and it hurts and it sucks. Our finances and the mounting cost of what is and what is to come. Life while we are in the hospital, our boys, our home, our responsibilities. What happens if one of the boys gets sick, or breaks something. What happens if our cars break down and we need to be at the hospital or our roof leaks or there is a storm or our pool equipment breaks or our fridge stops working or someone doesn't know that I am an insane neat freak and puts the boys clothes away wrong!! Silly I know, but what can I say, I told you I worried a lot. So again when these things come to mind I ask and tell God and take comfort in the fact he knows and cares. And you see he is already teaching me and reminding me that all my "control" is just an illusion and if I am going to rest it will have to be in him.

"We are afflicted in every way, but not crushed, perplexed but not despairing; persecuted, but not forsaken; struck down, but not destroyed."
2 Corinthians 4: 8-9