How are we doing?

This is the question I get asked the most. We are doing fine. Great, actually! But I'm not sure everyone buys that - and based on the number of compliments I get about how "great" I look, I don't think the reason is because I look disheveled. I guess people expect we would be struggling or it would be difficult to process. The thing is, for me, there is very little to process at this point. We knew her arms would be short, we knew she maybe had some fingers. Tests showed her organs to be good and all her other bones to be growing fine. And then Maggie arrived, perfectly healthy, with five working fingers. We still have all the same questions we had before - what caused this? What other issues might she have? What can we do to help. But, now, instead of lingering questions, we have doctors appointments and tests to help us find the answers. As we get some things answered or at least ruled out, we will have more to process and as Maggie grows and the effects of her limb reduction become apparent, we will have hard times. 

I think that there were people in our life hoping and praying that she would miraculously grow arms. Right up until the day she was born. And now that she is here, and they can see she does not have arms, it is hard for them to face that. There is a grieving process associated with the loss of that hope. Grieving that loss does not diminish in any way how much they love Maggie and recognize what a sweet baby girl she is. So, I hope our friends and family who were wishing for the miracle that did not happen, do grieve and do not feel guilty for doing so.

That being said, I am not in the same place. I never prayed for a miracle or that Maggie would grow arms. I do not have any regrets about that - when we first found out at our 20-week ultrasound, I barely prayed at all. I just got lost in thoughts. It was not that I was mad and NOT praying, I just found it hard to focus. I was shell shocked and not sure what to think about, so I just generally prayed and thought about everything that was going on and figured that I would eventually be able to reorganize thoughts into directed prayers. After the tests and the visits to Children's, it was fact that she was missing bones and science that the bones would not grow. So, to me, praying for that miracle seemed pointless; I prayed for an otherwise healthy baby. Also, based on the outpouring of love and support from family and friends, and the amazing resources and stories we read on the internet, I really started to see what a wonderful gift we were given. If I could have gone back in time and had a perfectly normal sonogram, I would have chosen that path. But, once we were on this one, I never wanted to turn around and go back. 

For me, my prayers were answered. And I hope that my logical, somewhat unemotional, approach to life is not hurtful or insensitive to those I love. 

Thanks for listening!
~Erin