Such a good baby

Last night I was looking at pictures of a few friends who had just had infants. I was thinking how cute they are, look at that smile, look at that hair, look at those eyes, then I came across a picture of one where the few day old infant was screaming with her mouth wide open.

It hit me....

Lilah never cried like that. If so, very rarely. She didn't wail when she wanted to be nursed. She didn't scream, fuss, or make a lot of sound....for anything.

I would tell people how in tuned I was to her and I just knew what she wanted and needed.

But last night I got to thinking (yes, I know, not always a great thing) maybe Lilah has always been pretty non-verbal. Maybe I was so in shock with learning of her disability, at birth, that I missed something that most would have had a red flag for. Maybe because her "delays" kept appearing that I wasn't sure what was " a sign" or what was "normal" for a child with a visual impairment. Obviously as time has gone on we have learned that Lilah doesn't Just have a visual impairment. What we thought was the "biggest" thing against her, may now just be the smallest thing. What I thought was so hard, so rough, so, "oh my goodness my child is blind" really is nothing compared to what she fights against and is learning to do daily.

No baby comes with a manual when they are born. No child has a set of instructions that you know how to take care of them. But, most infants follow a path or a curve of learning, growing, changing, etc.

I wish I would have pushed harder at 9 weeks old when I had the first genetics test. That first test just told us she had all 46 chromosomes. It never mentioned a deletion. It never mentioned that she would be delayed. I breathed a sigh of relief after that test. Over a year later I have a "deletion" with no answers. No one can tell me if Lilah's deletion on her 8th chromosome means she will have heart problems, spinal problems, speech delays, mental delays, vision problems. No one can "fill me in" on my baby.

Is this God's way of slowly helping me love and appreciate her before sticking me with a massive diagnosis that will rock my world? I mean, I thought learning my newborn was blind was hard enough. With each milestone that passes, I learn that my child is more "delayed, disabled, different." Those three words fill her forms, her "labels" by this world that give us no clue as to who she really is.

I take Lilah to multiple therapies so she can learn to communicate with me. I take her to multiple therapies so I can help her walk, pick up items, put them back in baskets, things we all take so for granted. I have the deepest, strongest, rip my heart out of my chest NEED to help my child.

I would give anything to hear her say, "Mommy, I love you" or even, "I am mad at you" or "No, Mommy." Anything...I want to know how to help her. But, I don't get my wish just yet...I must wait...much longer than others.

What I would give to know she is OK. To see her "path" in this life and know that all of this is just a stepping stone to something greater. What I wouldn't do to know that she will live a long and healthy life. But, I don't know those things. I don't know one day to the next.

Tomorrow we go back to Atlanta to see not only her eye Doctor (Greenberg) for the follow-up post op, but we are also taking Lilah to see one of the top Cardiologists at Scottish Rite to run tests to find out why Lilah had two separate strips of arrhythmia's during surgery. As my mind races and I can barely sleep, I wonder what is in store for Lilah.

What else will we find she has? Or more honestly, will we finally learn something about Lilah?

I wish that Savannah had better specialists. I wish that our town wasn't a "good ole boy" cover each other's rear ends. I wish that we had more resources, but we don't. So, off to Atlanta we go. Bright and early tomorrow morning.

One more time we must leave our older children in the care of others as we take Lilah for more tests, more doctors. One more time I am filled with guilt, fear, grief, questions, what ifs, etc.

Once again, I must lay all of my burdens at the feet of Jesus and tell Him how all of this hurts. Once more I will beg Him to give us good news and answers. Once more I must learn to trust Him even though I do not understand why. Once more I will try to stay as close to Him as possible.

Even in the midst of all of this uncertainty, one thing remains true..Lilah is such a gift. She is a precious child of God and she melts the hearts of those who meet her. She really is a good baby.

Guess I shouldn't say that any longer, seeing as she will be 3 soon...

She really is an amazing child!

Now, that's better...and much more appropriate.