Pain, Grief and Joy 04/18

The past couple of days I have felt unusually sad about Lyla's condition. From the beginning I was always very hopfeful and feeling okay about everything. But the past couple of days I have been feeling hopless, even though I hate to say it. For some reason I feel like everything has just hit me in a new way and I'm realizing for the first time, the seriousness of her condition. It's like I'm finally realizing the matter of fact 'truth' about how this is going to go and how it's going to end. The fantasy about bringing her home no longer makes me excited and ready to decorate a nursery, in hope that she'll spend awhile with us. I now imagine just how tiny her little body is going to be, and I'm picturing putting her like a rag-doll into a carseat meant for 'nomral sized' babies and seeing a single strap envelope her entire body. It makes me sick to my stomach to think about and I can't bare to imagine it anymore. Why can't she just be okay and start growing?!
I know I haven't truely lost hope. I just have fleeting moments of feeling sad and angry that this is happening to my sweet girl. She doesn't deserve it and it frustrates me.
BUT as I am feeling all of these things, the Lord has a way of letting me experience the pain and grief, but giving me joy as well. This morning, before I was even fully awake, Lyla decided to give me about 7 or 8 bonafide kicks. I was so taken by the force of them that I let my hand rest on my belly where she always lays. Sure enough, I felt her for the first time, kick from the outside. I was so mad that Adam wasn't there to feel this. Her movements are typically so gentle and delicate, it's impossible to feel from the outside. I wondered if we would ever be able to experience this because of her size and lack of weight. I had also heard that many triploidy babies lacked muscle tone...not my little girl. Her kicks today were proof of that!
It's funny how opposites can coesxist together. Pain and grief and joy often dance together in moments like these.

When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

Some of you say 'Joy is better than sorrow,'

Others say 'Nay, sorrow is the greater.'

But I say unto you, they are inseperable.

- Kahlil Gibran