April 18, 2012
APRIL 18, 2012
Once again, I’m going to try to be articulate in a brief manner, and again, I’m not sure I can do it. I’ve been worried about sending out too many emails, but from what I’ve been told, those worries are unwarranted.
We don’t have a medical update. We hope to have one of those next week after our next appointment, but as Pearl’s father I want to keep telling you the story of all that God is doing through her. What father doesn’t tell stories about his children? And… I can say that she is growing! She is strong and Ruth can feel her moving constantly. That is amazing.
We do not know how long we will have to share her with you, so my desire is tell you the impact that her life is making now. Right now, we can see clearly, and there may come a time when all that we see will be viewed through watery eyes. Thus, I need to tell you what we see while our vision is clear. You may need to remind us of these things when things get messy.
God is completely turning our lives upside down through Pearl’s life. The shock of hearing the news of her condition has worn off, and we are learning what this new normal looks like. The things that made us break down a few weeks ago now seem like normal conversation. I’m amazed when I realize the weight of the conversations that Ruth and I have with dry eyes. I believe that the peace we have comes only from Christ. It’s not as if we are unaware of, or oblivious to, the severity of Pearl’s condition, but we are more keenly aware now that God is executing a story that he wrote even before he created the world.
There is peace and comfort in knowing that she may fade from one side of the veil to the other without ever even knowing that she can’t see, think, or breath without difficulty. There’s also a peace in knowing that she may grow into an adult who knows only what it’s like to be carried by God, and that she will know intimately that Christ wants us to be weak and reliant upon him for all things, that we can’t even breathe unless he is pushing and pulling oxygen through our lungs. I am being taught this lesson very clearly right now, and I am grateful for that.
We truly feel privileged to have been given the opportunity to care for Pearl. People all over the world get the same type of devastating news every day, so it’s not as if we are unique or special. The amazing part is that God chose two of the most normal, unimpressive people that we know of and has given us the privilege of partnering with him in unfolding a story about a baby girl with only half of a brain and no nose, and a God who numbers days, makes people out of dirt, and rides in to town on a donkey, unlike any other king has ever done. He has used us to display himself. He has pulled us in close, because he knows that if he doesn’t, we will rebel and fall off the deep end. We have peace that passes all understanding, even while in the midst of something that should otherwise crush us. It’s not as if we’ve already gone through the fire and are able to look back at how he sustained us. We are in it, and he is good.
Everything is a gift. Pearl is a gift. Her life is a gift. Her diagnosis is a gift, and God using her diagnosis to show us himself, and then giving us the peace to be carried through this is a gift. This sounds like empty words and clichés, I know, but I wish you could see into our hearts to see that the opposite is true. I don’t know how to say any of this without using clichés, but God is good and his blessings, mainly the blessing that is himself, is so rich to us right now.
We have another appointment on April 26th. It will be with the neonatologist and also with a perinatal palliative care team that is basically a hospice team for infants and their families. We will have another ultrasound where we hope to hear more good news about her heart. If I’m completely transparent, we hope to hear a healthy diagnosis all around, though we know God has not promised this. It sounds silly, but I really want a good picture of her face, as well. That is something we don’t have yet. We are still hoping and praying for a miraculous healing. I believe, more and more, how capable he is of this. (Mark 5:35-42)
The team at Vanderbilt is amazing, and it will be good to meet with them more and find out more about how Pearl is developing. I’m so grateful that they are caring for us. Thank you all for praying. Ruth and I are doing well, and the pendulum swings of our emotions are less severe than they were two weeks ago. We are on solid ground. Brennan and Abigail are also doing well. The conversations with them about Pearl are much easier, and they are both excited about the prospect of caring for their baby sister. Brennan reminds me not to toss their old baby toys, because Pearl will want them when she gets here. I do not yet know how to discuss the severity of Pearl’s diagnosis with them, or the fact that she may not be coming home. Maybe I will never have to have that conversation, I don’t know. Ruth had a friend tell her that she doesn’t need grace now, to deal with things that she doesn’t currently have to deal with. Perhaps I am in the same boat, and God will give me the grace to have that discussion if and when it needs to happen.
Please continue to pray for a miracle. I still believe that with a simple word, God can undo the “not compatible with life” diagnosis. He has answered all the prayers that we requested earlier. Thank you all for reading these long emails, and for praying. Thank you for the constant reminders that we are not alone in this. It’s been a few weeks since the original diagnosis, and I know that life brings about demands that can clutter your minds. Thank you for not forgetting.
I hope to have more information to share after next week’s appointment.