People ask me all the time "how are you doing?" with a tone that shows they really want to know if I'm struggling physically or emotionally or spiritually at that particular time. Lately, I've felt like I'm really fine! As Robert has been saying... we're on "cruise control" until delivery. We've found out what we can and don't expect a whole lot to change between now and then. We know that there are not great predictive indicators for CDH and that it's hard for us to know how Clara will do until she actually gets here and starts breathing air. So, for now we are mostly trying to focus on the positive, remain prayerful and optimistic about her future, and focus on taking care of ourselves and making the rest of this pregnancy as healthy and happy as possible.
Well, that's lately. But today is different. I don't know exactly why but today I'm having one of those days where this burden feels especially heavy. I'm having trouble focusing on my school children and thinking about anything besides Clara. And I'm feeling a little overwhelmed right now by the enormity of what's ahead.
At the beginning of this ordeal we said we wouldn't start "Googling" this defect and using the internet for answers to questions, but would rely only on our doctors and their expertise. For the most part, that is exactly what we've done. There is an organization called "CHERUBS" which is The Association of Congenital Diaphragmatic Hernia Research Awareness and Support - a non-profit group that is designed to support families with CDH and try to learn more about the condition which is relatively unknown and under-researched. Today, I spent a little bit of time on there reading some of the success stories (only success stories - I couldn't bear to face the ones with a fatal outcome) and I think that the reality of what a difficult thing is ahead of us has really hit me hard. I know I need to stop reading and put this out of my head for now. I'm trying to find the balance between being hopeful, optimistic and believing in the miracles that I know God can do and also trying to prepare myself realistically for a difficult trial ahead of us. I'm finding that is a very fine line and I don't know how to keep my balance walking across it.
I guess it's normal for the processing of this to come in waves, for me to have moments of clarity and strength and other moments of unexpected emotion and fear. I'm such a feeling person anyways that I know this is my way of accepting and dealing with everything. But it's hard to have a day like this and to feel so out of control and alone and fearful. I know that God does not want for us to live in fear or worry, so I'm trying to cling to Him and remember all of the many, many blessings we have to be thankful for.
So, for those of you who have said to me, "How are you doing?" and want to really know where my heart is, here's today's answer: I am sad. I have been fighting back tears all day and the thought of my sweet baby Clara entering this world in such a difficult place is breaking my heart. I feel helpless, because I am helpless. There's nothing I can do or say to change anything and I understand better now than ever before how much a parent wants to fix things for her child. I know in my head that I will be given the strength to face what I need to face and that God will provide for us, as He has already, by giving us what we need - including an incredibly supportive community of prayerful people. But my heart today is sad. And that is where I am.
I guess it's normal