Hard and Tender Times

I've been hesitant to share what has been going on with our baby girl, I think because we didn't and still don't really know what to expect. And I've actually written several posts but haven't published them...These last few weeks have been a tender time for our little family. They have been eye opening and heart wrenching. Mentally, emotionally and even physically exhausting. But we've also seen the tender mercies of the Lord and have been so uplifted and strengthened by so many family and friends who have shown their love for our family. We are forever grateful for that.


We discovered on Jan. 25th that our baby (a girl we decided to name Amber Grace) has fluid in her brain and not as much brain tissue as she should have. After lots of waiting and worrying and wondering what that meant, we saw a specialist and a neurologist and had an amnio and an MRI to try to get more details as to what IS going on with her brain and what it all means. 


The amnio ruled out Trisomy 13 (which they suspected) and Trisomy 18 and Down's. The MRI and Neurologist gave us the most information and basically it amounts to this; Amber is missing the right half of her brain and is missing her right eye and her nose appears to be mostly flat. She does have fluid in her brain and a ventricle on the left side that seems to be bigger than it should be. The neurologist said he's never seen anything exactly like it and couldn't say for sure what the outcome for her will be, he feels pretty confident that will be able to bring her home (something of a shock to us-we had been thinking for a couple weeks that her dying would be the most likely outcome). The left side of her brain appears to be normal and the back part of the brain that controls feeding, going to the bathroom etc. appears to be intact as well. And the rest of her body appears to be healthy. So she'll have impairments, what and how many we don't know. And neither does anyone else. He also believes that she did have brain tissue on the right side at one point because her skull isn't misshapen and was likely destroyed by either a stroke or an infection of some kind.


So while we have more details as to what IS going on, we don't have more details on what it all means or what to expect. The unknown is hard to deal with. We're not sure what to prepare ourselves for exactly. That's hard. 


Alex and I decided early on that we need to give her the best chance we can and try our best for her, and we're determined to dig in our heels and deal with whatever it is God has in store for our baby girl. We're sure she is special, we know we love her and we know she is an important part of our family. And important to our family. 


I recently read an article by James E. Faust and part of it says:

I wish to say a word of appreciation for those among us who struggle with handicaps, and impart a message of comfort to their families, especially to the parents. Where in all of the world is the son or daughter of God who is totally without blemish? Is life not worth living if it is not perfect? Do not the people with handicaps also bring their own gifts to life—and to others who are free of those handicaps—in a manner that cannot come in any other way? 

We know Amber will have unique problems but she'll also bring unique gifts to this life and to our family and friends and in many ways she already has.

Thank you all again for all the love and support, it really has strengthened and encouraged us.