be still, my soul

You always think things will never happen to you. I have a clear memory of telling a friend at lunch just a couple months ago, "I couldn't imagine finding out that my baby had problems." It really didn't occur to me that that was even in the realm of possibility for my life. But why wouldn't it be? Such arrogant naivety!

Well now I don't have to imagine it, I can remember it. I can remember the numbness mixed with the absolute certainty that I could NOT cry in front of the doctor and that I must make it to the car first. The grief for really no other reason at first than loss of expectations. Then the fear that set in and the grief that came with that. This baby that is mine and who I love with all my heart will not be perfect. That is very real pain.

But now, acceptance. Peace. Or, as I have come to appreciate as the best form of peace for me, calm. Hope and even more than that, certainty that whatever we face with this child will be just what we need. As parents, as a family, even what our baby himself needs, to grow and deepen and enlarge our hearts, souls, and understandings. I have never been more appreciative of the need for a deep understanding and love for the gospel of Jesus Christ. It is everything. My testimony is the most precious thing I have and I would be lost, adrift, drowning in life right now without it. With it, I am calm and sure that it. will. be. ok. That isn't coming from me. It is coming from outside me, comforting me like collapsing in a soft bed at the end of a long wearying day. I sleep in peace because of the reassurance of my God. I can't tell you how much that saves my life. I am ok.

What we are facing:

We had a fetal echocardiogram last week and found out that there are multiple cardiac tumors on the baby's heart called rhabdomyomas, which themselves are mostly ok and will diminish and go away after birth. They grow until birth and one has a small chance of starting to obstruct the aortic valve between now and my due date but it won't cause too many problems other than requiring delivering at Primary Children's so they can correct that immediately after. What is the concern with these is that they are very likely (90%) a sign that he has a genetic disease called tuberous sclerosis. This is a random mutation on a gene that normally inhibits cell growth. Non-cancerous tumors form in the brain, kidneys, skin, lungs, and eyes or some combination of those organs. The brain tumors have the most significant impact and may cause seizures, intellectual disability, developmental delays, and/or behavioral outbursts. It is a disease with a huge range of manifestation, both in kinds of symptoms and severity. Some people have mild or even no symptoms and others end up severely disabled. Most experience some moderate symptoms that can be medically managed. Drugs and therapy are both used to control seizures and help with development and behavior. In certain cases, surgeries can remove some of the tumors and there are recently approved drugs for this specific condition that shrink the tumors. Most people with it can live normal lives.

Most people with it can live normal lives. It lessens the fear. It makes it easier to trust the feeling that it will be ok. But still, if there is to be no normal life for us anymore, it is still just mortal life, just a blink of an eye, the immensely short period in which we break in pieces and are remade whole. I know, I know I will come out the other side. And that there will still be joy and laughter and goodness and peace even in the middle. I still can't wait to hold my baby and watch him grow and learn. I still love being a mother and wife and daughter of God. It is enough and more. It is a good life for me and will continue to be so. Because I know who I am and more importantly, who I am to my Savior, I am happy and that won't change.