I have been feeling pretty strongly that I did not want everyone to know what Rachel's diagnosis is. My reasoning behind this was to protect her from people giving up hope for her healing and from people thinking of her differently. It was also to protect my heart and Desirae's heart from insensitive things people would say. We had unfortunately already dealt with these things a day into being open about it, so I tried to pull in the reigns.
What I have been frustrated with lately is that it seems that people can't handle not knowing - trust me, I get it - but it's been difficult to be patient and gracious towards people when I am in such a vulnerable state. And let's face it, no Mama likes people messing with her babies! Doesn't matter if they are in the womb or 40 yrs. old. It's how God made us.
I have been praying about this and God has revealed to me that I am afraid. I am afraid of people's opinions, how you'll view my daughter, the insensitive things I'll have to listen to in the name of "people don't know what to say" and that Des will hear these things. I'm afraid that you'll give up hope for Rachel's healing - which I've seen already in the people who do know her diagnosis. God is capable. I have to plan for what we're being told, but we believe wholeheartedly that God could still heal her.
But, God says we should not have a spirit of fear.
And on the flip side of all this, my hearts desire is that if someone gets this diagnosis today and goes home from the Dr's, scared to death and googles it, that she will not take the baby's life into her own hands. I want that girl to find this blog and a message of hope. I want her to see the blessing in her baby and even in the hard road she'll have to walk, seemingly alone, yet with God by her side.
Obviously by now, you're seeing that I'm about to tell the "big secret" - hold your horses and don't jump ahead, I have some requests - bear with my type A personality for a moment. Please read all the way through and try to avoid the temptation to tell everyone your version, but instead direct them to this post so that they could get my version first, since it is obviously more accurate. I appreciate you respecting this wish, even if it seems dumb to you. I am aware that there are many who have not agreed with how I have handled this from the beginning and I'm sorry, but it's not about them and I'm doing my best.
So here it is - this is hard for me... Our precious baby girl has anencephaly. This means that between day 24-26 of pregnancy, before we ever knew we were pregnant, the end of her neural tube failed to close properly. She is missing the cerebellum part of her brain and the top of her scull. She has her brain stem, which is making everything else function, but the remaining brain tissue she has is not protected from the amniotic fluid and is therefore being affected.
I know you are going to want to look this up - google can be very scary and I would not recommend searching aimlessly. I am providing a link to a site that is the best one to look at and has tons of info - as well as a link to the section that will tell you how to best support us. This should help with the "people don't know what to say" excuse (that I am so tired of hearing) because if you read what I am asking you too, you'll know. Please know that I do not expect everyone to do everything perfectly all the time. I DO NOT want you to walk on egg shells around me in fear of hurting me. Just please be responsive to my feed back. I have talked to friends/family about something that hurt and had them really love me through it and I have talked to friends/family about something that hurt and had them make excuses or justify their actions. One leaves me feeling better and the other unloved.
I am not sure if this "not to do" is on that site - It should be somewhere, but just in case...
DO NOT ask us why were are continuing this pregnancy. She is not a "pregnancy" - she is a baby and it is up to God how and when He will take her home. Our job is no different than it would be if one of our other children got into an accident and was not expected to live. Our job is to pray for a miracle and fight for her life while giving her every ounce of our love. We will see her through to the very end of her God-given life, regardless of how short it is, or how much we have to sacrifice along the way. This is not a decision we have made based solely on being Christians and because "God says" although those are good reasons...It is because we are her parents and love her with all of our hearts. If you have this awful thought - please keep it to yourself, and remind me not to call on you if I'm sick... sorry, my sense of humor can be off at times - that and hormones can be an interesting combination.
Here is the site that we'd like you to look at should you feel the need to investigate:
Here is the one for family & friends -PLEASE take the time to read this:
Both have a ton of info and anything you need to know. I would ask that you try to stick to these sites. I would also like to ask that you remember our earlier request to not fill us in on things you think we may have missed. We are well aware of what's going on. Thank you for your patience with me as I try to walk this road. Your support is so appreciated and I don't want to sound ungrateful or critical. I am hoping that now that you all know what you've been needing to know, that some of the gossiping will slow down and we can again focus on the life that is within me and what God is doing through her.