March 28, 2012
MARCH 28, 2012
I don’t know how to unpack this last week for you in a way that will be brief, yet will still tell the story well. I will try.
It’s been an amazing few days, filled with moments of deep sorrow and moments where we are so amazed at the privilege to be a part of all that God is doing. Our inboxes have been flooded with so many notes of encouragement and prayers. Thank you all for that. We do not feel alone. It feels as though we have all been invited in to an amazing story, where we get to watch God do what he does: He gives and he takes away. He gives us things that make our hearts leap for joy, and sometimes takes them away. He gives us things that hurt, and sometimes takes them away. He is doing all of it, and there is great peace in that. There is great peace in knowing that He not only has given our baby girl the means to cope with these things, but that He is actually forming her in Ruth’s womb. He is making her this way! He is the one knitting her together exactly as He sees fit. He has numbered her days since long before she was conceived. That is amazing. We know two things. He is sovereign, and He is good. Even when it seems as if those things don’t go hand in hand, we trust that they do, knowing that the confusion lies with us, not with Him. Perhaps that is the peace that passes all understanding.
We gave her a name last week; a name that Ruth has been sitting on for a while though I was never too keen on, until we received the news of her diagnosis. Pearl Joy Brown seems more than fitting though, and I cannot imagine her having a different name.
Yesterday we went back for another appointment. Though I could take 10 pages to tell you all that happened and all we were told, I will sum it up like this. We were given freedom to hope. The holoprosencephaly (HPE) diagnosis is the same, and there is a 50% chance that she has Trisomy13, which would certainly decrease her chance of survival. If you have done an internet search for HPE, you know that there are 4 types. As suspected, Pearl has alobar HPE, which is the most severe type. The realities of this were clearly explained and laid out for us yesterday. The doctor didn’t mince words during the discussion, but she was very clear that she and her team will hope with us. Though she knows how scenarios involving HPE have historically played out, she also agreed that she cannot see the future, and there is much that we will not find out until she is born. We did find out that she has a cleft lip, though we will not know if her pallet is affected until she is born. She has no nose, and her eyeballs are extremely close together. They are not set back in sockets in the way that most peoples eyes are. Her heart appears to be to strong and normal, though because it is only the size of a nickel right now, there will be more to see when we go back for our next appointment in a month. She is very hopeful that Ruth will be able to carry her to term, and even mentioned that a natural childbirth is the optimal way for Ruth to deliver. That was great news. There is a chance that she will try to come early, meaning 2 or 3 weeks early, but that is fairly normal. We were so encouraged that we have a team of doctors and counselors who are just as passionate, hopeful, and involved as we are. We have a good team.
So many of you have emailed that you were praying for peace, and many of you have said that you were praying for a team of doctors who knew the severity of her condition but who also would give us the freedom to hope. These prayers are being answered! Please continue to pray for that. Please continue to pray for Pearl. Just like any other baby at 21 weeks, she is still being put together. Our ultrasound technician told us yesterday that she has seen ultrasounds go from devastating to completely normal before. A miraculous healing is possible. Please continue to pray for Brennan and Abbey. Abbey is completely oblivious to things, and that is good, but Brennan is a very intuitive little man and I think he is beginning to understand some things. He is much more clingy, doesn’t want to sleep without Ruth next to him, and has become a bit more obstinate. Some of this is normal for a 4 ½ year old, I know. I wish I could see inside his head and know how much he really understands. I hope that if he is picking up on things, we will know how to articulate that to us, and will know what questions to ask. We told them both yesterday that Baby Pearl doesn’t have a nose, but that she has the biggest, most beautiful eyes that they will have ever seen. They smiled and asked, “Ever? Wow!” We are trying hard to prepare them to meet her, and to let them know that God has fearfully and wonderfully made her, just like he has done with everyone. Please continue to pray for Ruth. So many of you have mentioned how strong she is, and it is true. She has shown amazing strength this past week. She will have some hard days ahead of her, and I am praying that she will feel the freedom to be weak, and that she will continue to lean on family and friends, and allow God to carry her through this. There has been so much sadness that has lifted since our appointment yesterday, and we will both be seeking ways to continue with a bit of normalcy. She is planning on taking another week off from teaching soap class, but she is feeling the desire to plug back in with her mom’s club. That will be good for her and the kids both. The kids need the normalcy, and her mom friends have been an amazing source of encouragement and strength for her. I need to begin looking for work, as I have no work on the books right now. Please pray that God will provide a job that will provide enough income to sustain us, but that will also allow me to be here with and for my family as much as possible. Please pray that God will give me wisdom as a father. Pray that He will give Ruth and I supernatural patience with Brennan and Abbey and that we will be aware of what it is that they need.
The prayers that you all have prayed are being answered. I know there are times when it seems as though prayer falls on deaf ears, and that there must be something more tangible that can be done, but let me assure that if there are times when that is true, this is not one of those times. A buddy of mine used the phrase, “petitioning Heaven,” and that is exactly what we are doing. He is listening, and is faithfully answering according to His will.
Thank you all for everything. I will probably not send one of these emails every week, but will try to update you as frequently as needed.