Bearflag, I want to second Broomstick’s words. I’m not good at words in situations like this, but please try to remember the good moments and draw strength from them. My thoughts are with you and your family.
I have been reading this thread, trying to come up with just the right words to say to you and then not posting because nothing seemed adequate.
There are many people who have already posted who expressed it way better than I can.
Just know that my heart goes out to you and your wife and your sweet baby girl.
Oh, good Lord. For whatever it’s worth, from a very imperfect stranger: I am so deeply sorry for your trouble. I wish you peace and strength in the coming days. Try to hang in as best you can.
Please know that you have friends here. 
My heart bleeds for you. My prayers are with you. The most important thing to remember is that she doesn’t know things should be different. Watch your conversation in front of her even now. I know when the shock wears off you will continue to fill her life with love, and fun, and softness. She is lucky to have you both.
And remember that being strong doesn’t mean refusing to cry or face the pain; it means choosing to love and be loved, even when you know it’s going to hurt in the end. Surround her with love, you won’t regret it.
hope you have as many moments as you can with your little owl. hugs
I just wanted to add another voice of sympathy. I’m so sorry to hear this.
If you can think of anything you need, please post it here. Someone (probably a lot of someones) will be there.
Me too. Words feel so inadequate, but I’m so sorry.
I cannot imagine the sadness and grief you and your wife are going through now.
Make every minute count with hugs and assuring words and little joys, both for your daughter and your wife.
My hope is that both you and your wife will someday be able to look back and think about some of the good times and happy moments - no matter how brief they may or may not be.
My sincere best wishes to all three of you.
I haven’t posted yet, because really what is there to say? But this story has absolutely been haunting me now for two days, largely because I have a six-month-old daughter, and just trying to imagine what you’re going through makes me want to break down sobbing. I’m so sorry.
This will be really tough to go through, but I can see you’re being positive and pragmatic, which heartens me.
It royally sucks, but it’s life, and I’m sure you’ll have the strength to make the most of it where you can. Give your baby all the love it can handle.
Oh my God, I am the father of an eight-month old baby boy, and reading this is leaving me in tears. I am so, so, sorry, Bearflag.
I am so very sorry to hear of this, Bear. Please know that so many of us are here for you. Use us to dump the rage and sorrow as best you can.
I have a friend with SMA. The docs said he wouldn’t make it past age three - they were off by quite a bit. He’s married, has two bachelor’s degrees and a full-time job. I know there are varying degrees and types, but since he was given the same prediction as your daughter, all may not be lost.
He’s 28 years old.
Understanding
Loving
Sharing
Grieving
Accepting
Family
Friends
Support
Time
With all these things in abundance over the past couple days, we feel a lot better than we did when the news hit. It’s by no means easy, but it is better now than it has been.
We also know that, for all of our sakes, we cannot just curl up a whither away. We need to be strong and pragmatic. We also need to hold each other and cry.
We need to give the little owl as much of ourselves as we can and ensure she is happy and fulfilled.
All of your comments help. My wife is not a Doper, but she knows I am. I showed her this thread and I’m sure she’ll see it again. We thank you again.
Bearflag, when my son was hospitalized as an infant, I remember that one of the hardest things for me was realizing that the sun still rose and set, and that other people’s lives continued on unchanged, while our world was turned completely upside down and inside out. So, know that at least this small group of people here on this message board is not unchanged by this news, and we are all with you in spirit in this difficult time.
I’m so sorry for what your family is going through, Bearflag70. I’m sure you will face this as well as it can be faced and I hope the outcome for you is better than expected, like Dan Turk’s story about his friend.
Bearflag, I am so, so sorry. I know people who had or have similar conditions (I don’t know the exact diagnoses, but both a second cousin and a classmate had “a problem with his back muscles”, which sounds like this); that particular classmate was a normal student except for being in a wheelchair and having less movement range in his arms than other people, he didn’t even miss class for doctor’s visits more than any other teenager. I don’t know how long will you and your daughter be able to enjoy each other’s company, but I am glad that she has loving parents.
I’m terribly sorry to hear this news about your precious daughter Bearflag. Having a new baby should be a time for joy and looking forward, not one of such sadness and dreaded anticipation.
However, you’re little girl is still very much here and now. I imagine you’ll just love her madly and bless the days you do have together: may they be many.
kambuckta
Your family and your precious little one will be in my thoughts and prayers, Bearflag70 and I only wish that there were more I could do.