Thursday, January 14, 2010


It definitely feels like we are back in school now. I know the kids went back last Wed. but with the snow and then school letting out early one day and then school starting late the next day, it didn't really feel like we were back in school. I'm sure the teachers didn't get much accomplished with the snow crazed kids they had on their hands. This week really feels like we are back in the swing of things especially since SK is back to her regular therapy schedule.

I miss those boys so much. We had a wonderful break and I am so sad to see things go back to "normal." There certainly isn't room for boredom when they are around and although I am tired and weary by the end of the day, they don't allow for my thoughts to wander into dark places. There is no question that they lift my spirits. I don't cry around them and I try my hardest not to let them see me sad, there is no time to dwell and worry about the future. We usually just go from one activity to another with a few stops along the way for food and for me to take care of their little sister. It almost hurts, I miss them so much.

We had a visit with Sophie Kate's vision therapist this week, we only see her about once every 2-3 months so it certainly isn't a regular thing, but it is always an interesting appointment. There is nothing "normal" about what we do with SK, yet everything we do is "normal." I know y'all think I have lost it, but let me explain.

There is nothing "normal" about feeding your baby through a gtube, there is nothing "normal" about constantly combating muscle stiffness and seizures. There is nothing "normal" about giving your baby 5+ different meds multiple times a day every day, but then there is a flip side to that. Everything we do with SK is "normal" to us, it's just a part of every day life. I guarantee you little Grey doesn't know anything different. It's all been a part of our life for over two years now.

This week with the vision therapist, SK did something very "normal baby-like," if I can put it that way and it tore me up, kind of in a good way and in a bad way all at the same time. We were trying to get her to reach for her new little stuffed kitty. She was trying so hard with the limited movement that she has in her shoulders and arms but in her own way she managed to reach out a little and touch the kitty. When she did her chubby little hand opened up and she grasped and held the kitty to her. Those of you who are around SK know that she keeps her hands pretty much in fists, but when she felt the softness of the kitty she opened up her hand to touch it that way. It was so sweet.

I am sure that some of you who have talked to Sophie Kate in the past 4 months or so have noticed that she is focusing more on people when they are talking to her. She really enjoys the social contact and is recognizing more when someone is calling her name. The vision therapist wants us work on someone else asking SK "Where's mama?" and then seeing if she will look for/find me.

I think all these months upon months upon months of dealing with/learning about all the medical things that I have to do with her have put some of these "normal" baby things in stark contrast. Nothing about SK is typical and maybe just to protect myself, I don't look at her or anything she does as typical or normal. The thought of her looking at me when someone asks where her mama is brings no words to me at all...only tears.

When you have been told so many times that your child won't be able to do anything, letting in tender moments and thoughts about what I so desperately desire, tears at scabs and reopens old wounds. I think it is a self-protective wall that I have put up and I am not giving her credit for what she is doing or what she may be capable of...sometimes it just hurts too much. Thinking that one day she could make a purposeful realization that I am her mother, well...sometimes it is just easier to buy in to what all the doctors are saying, as strange as that may sound.

For me it all goes back to a very real and conscious minute by minute decision to rely on and trust God. It is not easy and it is exhausting but I cannot allow myself to be swayed by whichever way the wind is blowing. I cannot place my hope in anything here on this earth. All of SK's medical team have an opinion about her and a lot of them have made up their minds about what she is and is not capable of. The only safe place for us is in the shelter of the Almighty. At His feet is the only place that I can unload all my feelings and emotions and in exchange receive healing, joy and hope. The kind of hope that will lead to an eternity filled with the sound and song of my baby girl's voice.

"Blessed be the God and Father of our Lord Jesus Christ, who according to His great mercy has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to obtain an inheritance which is imperishable and undefiled and will not fade away, reserved in heaven for you" 1Peter 1:3-5.

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