JUST ENJOY HER. Please don't treat her any differently than you would with any other child. We want Lauren grow with confidence and high self esteem that she can do anything she sets her mind to achieve.
A good friend of mine the other day told me a story of a disfigured child who didn't know she was disfigured. Growing up, her family and friends treated her all the same, as if she looked perfect. When she grew up, only when she went to school did she get approached with the question "why do you look like that?" She would answer confidently, "look like what, this is the way I just am". Another good friend gave me the advice of "when you go back to work and look back at Lauren's 1st year, what will you remember? Will it be the countless appointments, the tears, the disappointments, the sadness?" I answered YES. "Then you are not enjoying her" She then remarked that she will always remember Lauren's as being super smiley. I guess what she said really hit me. So I try not to stress and enjoy the things all moms should enjoy such as the first day she found her toes and they made it to her mouth, the first time she reached for something with her hands, the first time she ate solids.
So just enjoy her. Play with her. Smile with her. Interact with her. Please don't test her. Please don't "observe" her or "study" her. I know its hard not to as we all try and understand her needs, but let's leave that up to the experts to do, although I do catch myself watching her at times too and wondering. I can show you some simple exercises or positions that you can do to aid her muscle strength while you are playing with her (as you can see, I squeeze in physio wherever and whenever we can!).
Some of you have know tidbits, some of you have known for awhile, some of you are finding about all this right now. Don't be afraid to ask us questions. We'll be happy to chat. Its actually good for us to talk to people, it helps clear the air and gets things off our chest. You know me, I like to be open and honest. The past 10 months has been a roller coaster of emotions, but I think we are now at the point of finally being able to speak aloud and acknowledge the purple elephant in the room. There were so many times we wanted to say something, but unable to cope with the information ourselves, you can imagine how difficult it is to share the news with family and friends. We didn't want disappointment, judgement, or grief. Of course I wish things had worked out differently, and wonder countless nights what went wrong. But the truth is, this is the way it is, there is no point crying over spilt milk. It is what it is. So let's just move on and help her, enjoy her and grow with her.