It's been a good week. Life has felt pretty normal and we had a glorious 4 day weekend spent with friends and family. We are so thankful for these bright moments.
Yesterday was emotionally draining, but still good. I met with some of the neonatal palliative care team over zoom yesterday. The NICU Chaplain and 3 neonatologists from Hopkins were on the call. No new information, just more support and details on possible scenarios once she's born. It was extremely helpful to hear from the doctors who've seen babies in our situation and could give us some concrete possibilities and a better idea of what her first few days and weeks might look like. It was also extremely hard and emotional to walk through the worst case scenarios and the decisions we could possibly be faced with. I cried. Like a lot. Like ugly cries over the computer in front of people I just met. And they sat with me and let me process. It's weird, because I knew the range of possibilities, but walking through their reality was just a different experience. The Doctors and Chaplain reiterated multiple times that they are hoping with us. What an amazing group of people. Although the call left me emotional for the rest of the day (and even a little still today), I also received new infusions of hope and support. The Chaplain has texted since then to check in and give me her number and she wrote a long e-mail summarizing our call, since Seth wasn't able to attend.
One thing that the Chaplain reminded me multiple times yesterday was to be kind and gentle with ourselves, as this is a very stressful and difficult journey. Honestly, that's hard for me. Because I've walked in the peace that God has brought me through your prayers, I feel sometimes like being emotional is letting myself down - failing at keeping my mind in the right place. As I was praying through this yesterday, the thought came to me that you can fully trust Jesus and still just need Him to hold you sometimes. And He wants to do that. It's funny. As I was medidating on that, my mom texted me a very similar thought.
There are going to be triggers that I have to work through. To be frank with you, the abortion discussion this past week that has been all over social media brings up some emotion, as termination of our pregnancy was one of the first options we were given when faced with our baby's possible prognosis. In fact, even after we firmly shared with anyone who listened that we were firmly commited to our child and this pregnancy, wherever that led, doctors still left that option dangling. I'm not trying to make any sort of political or moral judgement here at all. I'm just encouraging anyone taking part in the debate to remember that there are real people behind these decisions and to speak with kindness. Sorry for that aside.
There are going to be ups and downs on all of the roads that all of us walk, and there is a God Who's Name is Comforter. In fact, Jesus knows and understands grief well. He wept when Lazarus died, even knowing He would be alive again soon, even though He is God Himself.
Thank you again for walking alongside us. I am humbled when I think about all of the people praying for us. Some ways to pray would be:
Continued peace and comfort for our family
That I would baby able to carry the baby into December and as close to her due date as possible (being premature adds complications and would delay her shunt surgery)
Pray for Seth and I to be on the same page as we walk through difficult decisions we could need to make in the future
For a miraculous healing of her brain
That many would know God's goodness and greatness because of this sweet girl's life
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