Monday, June 19, 2017

A little update...

So many wonderful things are happening around us.

I feel as though my blog as of recent has become a place where I share updates of our situation with Noah and his condition, however, it has always been, since the beginning, a digital scrapbook of sorts for my family and friends. I'm in a position where time is on my side, so I will continue to "scrapbook" as well as update on Noah's situation.

I am 29 weeks pregnant. I had a recent ultrasound which confirmed Noah still has this unfortunate neural tube defect which gives him a 0% chance of survival outside the womb. Some families have experienced hours, even days with their children whom had the same defect. God will ultimately decide how long we will have with Noah.
I feel so out of the loop with this pregnancy. I have never received an internal exam (not that I'm necessarily complaining). I haven't had the glucose test or peed in a cup for months and months. These are things that us moms dread in a sense, but they all are things that you deal with when you have a healthy pregnancy. I do have a lot of ultrasounds which are maybe the best kind of appointments to have.
There is a condition that is common with anencephalic babies called polyhydramnios. This is when there is an excess amount of amniotic fluid due to the baby not being able to swallow the fluid well. It causes major discomfort for mom. I haven't really felt well during any part of this pregnancy. I'm still experiencing morning sickness occasionally, and other dreadful issues that I'll spare you of the details. Anyhow, I have been praying against this polyhydramnios nonsense because I just can't imagine having one more contributing factor to an even more uncomfortable pregnancy. Please please pray against this for me.
I had a couple scares that were put to rest after my recent ultrasound, as well as good news that Noah is not experiencing any other defects aside from the anencephaly. That kind of sums up all the physical stuff.

We have had so many things going on around here that mentally I haven't really had a chance to think about much.

Mia and Danny had birthdays, Danny and I celebrated our 16th anniversary, and Danny's mom Theodora, is visiting us from Ethiopia.

If I have never mentioned how amazing of a cook she is, let me do that now. She is AMAZING!! She has been spoiling us rotten with her meals. She has only been here a few days and has already made tiropita, spanakopita, meatloaf, cookies, cake, and has a whole list of dishes lined up. We have been going out for coffee every morning and walking up and down Colonial Williamsburg. I'm thoroughly enjoying my time with her. All of us are! What a blessing she is!

All the children are doing well. Other than semi-typical teenager issues, and sibling rivalry, all is well.

We have decided we're going to deliver Noah an hour away in Richmond. We really feel like the hospital there will meet our needs and our palliative care organization is there. They are like our support group. With that being said, we will need to plan our delivery because going into labor naturally is not an option. My labors are too quick and the hospital is too far away. We've decided that we are going to deliver Noah at 37 weeks. That puts us at 8 weeks remaining. It's a little sobering. I'm trying not to think about it too much, but it's hard not to. I still can not imagine what it will be like. I can't imagine anything outside the task at hand. If God decides that the miracle we're asking for, is not the miracle we will receive...I will be saying goodbye to my child. I still can't get over that hump. This is actually one of my biggest fears ever.
I do feel blessed to have had time to know that this is a likely reality. I was told that a nurse in my OB practice also had a baby with anencephaly, but never found out till birth.

The biggest heartache is yet to come, and that's what I fear. However, I am trying to keep my focus on the light. I do not want to wallow in darkness, nor do I want to entertain the fears. I pray for peace and comfort especially for my husband, children, family, and friends.
I pray for guidance, direction, and sound mind.

God bless all of you!

Monday, June 5, 2017

Eye of the storm...

There is a famous story in the Bible {Matthew 14:22} where Jesus is walking on water. Peter was in a boat in the middle of a terrible storm, witnessing this miraculous sight. Peter says to Jesus, "If it is you Lord, ask me to come to you on the water". Jesus does as Peter asks, he puts his hands out and asks Peter to come to him. Peter steps out of the boat and begins to walk on water toward Jesus. When Peter took his eyes off Jesus and focused on the storm surrounding him, he began to sink into the sea.

I have had many people come to me and tell me that they admire my strength through our recent tribulations. I heard it so often, as a mater of fact, I started believing that "yeah, I'm pretty good at this", "I got this", "I am such a strong women", "I", "I", "I". Of course I had my moments where I would break down and lose my barrings. After all, I have a baby inside my belly, who kicks and moves and reminds me of the miracle of life every moment. However, also reminds me that he has anencephaly, he won't survive outside the womb, he may not make it through delivery, or if he does only for moments afterwards. So again, I had reason to lose my barrings, but overall, I was pretty good.

You may be wondering why I'm using past tense...

Because I had a week of very crushing realizations. I was no longer good. I was no longer strong. I no longer had this.

I literally wept for a week straight. That whole week straight the sky was grey, and rain poured out from every angle...non-stop! I wore black (top to bottom) every...single...day. I slept and slept and slept. When I wasn't working, I was sleeping or weeping. Everywhere my children requested to go would be postponed "maybe tomorrow". I thought day after day that tomorrow would be better. Tomorrow would come, and I found that the same feelings and sadness followed me through the night. My body hurt. I couldn't go far without having to rest. I was in a dark, cold, unfriendly place that I didn't recognize. Everyone that I spoke to seemed to be in a bad place as well. There was so much misery and suffering and what seemed like no way out.

One morning on my way into a school that I was teaching at, the sun came out and shined brightly on my face. It was so warm and bright and gentle. It literally felt like a kiss from God. I remember stopping and looking into the sky. I held both of my arms out and took in a deep breath. It was over. I could feel it. Not sure what happened at that moment, but I just knew that I was being called from the storm. I was like Peter in the boat. I didn't see Jesus walking on water, but I can't explain what I experienced. It was beautiful and hopeful and loving.

That was just a little over a week ago, and since then I have been in such a peaceful place. I am keeping my eye on Jesus. I have learned that this strength is not something I did, or have, or can conjure; it's Jesus. There are times when I'm feeling great, but doubt starts setting in, I can feel myself sinking into the sea. I know that as long as I have my sights on Jesus, I will continue walking on the water, and the storm cannot touch me. I am safe.

God is good all the time!

"You alone are the anchor, when my sails are torn. Your love surrounds me in the eye of the storm."
-Ryan Stevenson


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