A voice for Faith

Faith is a stander! Ok not an independent stander but she bears weight on her feet (which is HUGE) and allows us to hold herself up. She likes to hang on the the rails of the crib, and with support she stands. This "bearing weight" thing has been a long road. A few weeks ago if you would put her on your lap and try to get her to stand the minute her feet touched the floor she'd pull them up. So needless to say this is huge! Her physical therapist noted how Faith is going to learn the pull to stand backwards- she doesn't use her arms to hold herself up (once again a lot of it could be/c of her sensory issues....)but plants her feet and depending on the texture of the surface she'll hold on.
This past week we had Faith's IFSP (family service plan) meeting with her early intervention team (for those teacher friend's reading this it's like an IEP for babies). We have these meetings twice a year and come up with goals for the next 6 months. In the past our goals were always right along the lines with the traditional babie's first year milestones. This time time around we had goals FOR FAITH, not goals based on her age or what typical babies should be doing. There was really no mention about crawling or walking (two things that are still far off....) but more about what we wish for Faith. (It's dreaming those new dreams- Thanks Ann!) Our biggest wish for Faith is that she would have a voice- not an audible one-although that would be nice! ;) but for her to be able to communicate. As some of you may or may not know b/c of Faith's swollen airway and trach she is unable to produce any sounds. On a good day you may hear some very faint grunts when she is upset, but other than that she's Ariel from the Little Mirmaid. Whenever we take her anywhere or she meets someone new, people always comment on what a good baby she is because she doesn't cry like typical babies- what these people don't know is a lot of the time while they are saying that she IS crying, just not audibly.
Because off Faith's inability to makes sounds our wish is that she will learn to communicate with us in whatever way she can. For the past few months we have been using sign language with Faith, although she hasn't really caught on. In fact she doesn't even wave hi or bye. As Faith is getting older she is becoming more aware of what she wants. Her inmobility and inability to voice what she wants often causes her (and us) frusteration. So that is our new dream for Faith. We would like her to be able to say what she wants so we know how to help her. And it would be one more way to have a connection with her. We don't know when we'll hear the words, "momma" or "dadda" but we'll take in a sign or even in a look. We have no doubt in our mind that Faith knows we are her parents, but if we say, "where's daddy?" or "look at mommy" she gives us a blank stare. But that stuff isn't that important, what's important is that Faith knows that she has a family who loves her and who will do anything for her.

Allison Krauss said it best in the song "When you say nothing at all".....

It's amazing how you can speak right to my heart
Without saying a word, you can light up the dark
Try as I may, I could never explain
What I hear when you don't say a thing
The smile on your face lets me know that you need me
There's a truth in your eyes saying you'll never leave me
The touch of your hand says you'll catch me if ever I fall
You say it best when you say nothing at all

All day long I can hear people talking out loud
But when you hold me near, you drown out the crowd
Old Mr. Webster could never define
What's being said between your heart and mine
The smile on your face lets me know that you need me
There's a truth in your eyes saying you'll never leave me
The touch of your hand says you'll catch me if ever I fall
You say it best when you say nothing at all
The smile on your face lets me know that you need me
There's a truth in your eyes saying you'll never leave me
The touch of your hand says you'll catch me if ever I fall
You say it best when you say nothing at all