Princess Sophia

Princess Sophia
My name is Sophia Grace Crawford and I am one year old. I have been diagnosed with Batten Disease, a rare and incurable genetic disease that will cause me to lose the little sight that I have, worsening seizures, loss of the ability to move my arms and legs, and will ultimately leave me bed ridden. And it is always fatal. I will leave this world within the next two years but I don't know exactly when. Until then, my Mommy and Daddy want to help me bring awareness to Batten Disease. Please come on this journey with me so that, together, we can celebrate each day that I have left!

My Little Sack of Potatoes

Twenty three pounds. That is how much Sophia weighs. Twenty three pounds. Sounds like nothing. You probably think, my child weighs more than that. But twenty three pounds of weight with no support from the child, is very, very heavy. I once commented that Sophia is like a sack of potatoes. She has no support so its just "dead weight" for lack of a more appropriate term. If your child weighs twenty three pounds, you pick up your child, and they help by lifting their head, their arms around your neck, their legs around your waist. They have trunk control and even though you are carrying them, they are supportive of their own body weight. Sophia does not have that. Go to the gym. Pick up a twenty three pound weight (if they make such a thing), and carry it around. Make sure the weight is an awkward shape too. Oh, and thirty inches long. It has to wiggle and shake, and you have to fully support the "head" of the weight. The head will smack against your shoulder blades or chin if you aren't very careful. The weight should also have "limbs" coming from it as well; these limbs should hit you in the face and shoulders as you pick it up. Now, carry it around. Lift this weight in and out of a carseat, a stroller. Bend down and put this weight in a bathtub and then pick it back up when you are done. Carry the weight to a crib, lean it over the side, very careful not to "wake" the weight, and tuck it in the bed. Lift the weight from the crib and carry it to the living room and find a seat that is suitable for such a weight. A seat that will hold the weight without allowing the weight to wiggle to the ground, because remember, the weight does not stop moving. And when you have completed all of your activites for the day with your weight, tell me if twenty three pounds is heavy. Now, don't get concerned, I am not comparing my daughter to a weight. My daughter is much, much more. My daughter is a baby, an angel, a sweet beautiful being that means the world to me. But I am comparing her weight to a weight. I am trying to make it understandable and comprehendable because when I say she is heavy and weighs twenty three pounds, it is impossible for others to fully understand what that means. So this comparison is made. And my hand hurts. I have a pain in my right hand that will not go away. I have had it for months. I went to my family doctor two months ago and an X-ray was taken; nothing is broken, nothing can be done I was told. Stop using it so much, I was told. I looked at the doctor with this look of incredulity, because I had just explained the situation with my daughter. Oh, stop using it? Is that how I can make the pain go away? Well, why didn't I think of that. I mean, its just my right hand. Its just the hand I use to weigh 94 grams of formula and 21 ounces of water each day. The hand I use to grind fifteen pills into powder three times a day so that they will not clog my daughter's G-Tube line. I only use my hand to lift her a thousand times a day, change her diaper two thousand times a day, and change her clothes four times a day. Not to mention it is the hand I use to stroke her hair, massage her aching legs, wipe away her tears, and hold her tiny hand. But there are days when I think, I can't lift her anymore. My hand literally gives under her weight. I go to put her in the car seat and I stop, because I may drop her if I try to lift her. Sophia and I sit in the back seat of the car and I ask her to give me a minute until I can regain my momentum and lift her twenty three pounds up and over into that car seat and get her strapped in for safety. Times when I cannot get the stroller out of the back of the car and on those days, my husband has to do all the work, getting Sophia in and out of the car seat, in and out of the stroller. I stand there and watch and wonder, how much longer can I do this? Will there come a time when I can no longer lift my daughter? She is growing, and for this, I am happy. I want her to be a "healthy" weight even if her body and mind are not healthy. I have talked to other special moms that have special kids that weigh more than Sophia. One mom told me that her son weighs fifty three pounds and she lifts him and carries him from place to place. Another person may think, oh my! How does she do it? How does she lift such weight? But I know better. I know that she lifts his weight because she can. Because she does. Because she has to and there is no other choice, no other option. So I too will continue to lift Sophia. I will continue to bathe her, feed her, change her. I will do all the things she needs me to do. I am her mother. I will not fail her. I will not waver. I will not fall. I look into that beautiful face, the one with the perfect lips, round cheeks, and shining eyes, and I ask her to give mommy just a moment and then I will lift her to where she needs to be. Sophia just keeps babbling, keeps moving, keeps making those wonderful sighs: she has no idea that her mommy is not perfect. And I have no doubt in all the world that she, my sweet Sophia, most certainly is perfect. Up into the car seat, and away we go. Ready to conquer the world.

3 comments:

  1. I am always amazed when I see you carry Sophia in her car seat plus the diaper bag over your shoulder. i know how heavy she is from the few times I've done it and I end up out of breath and sweating! Sophia gives you strength. She needs you and she knows her Mommy will never let her down. Aunt Tracy

    ReplyDelete
  2. Crying. Can so relate. Great post.

    ReplyDelete
  3. My nephew has a severe form of shaken baby syndrome and just turned 12. As a result of the injury he has CP and is terminal,it is now just a waiting game. I have a brittle bone disease called Osteogenesis Imperfecta. Im wheelchair bound and I am supposed to have a weight restriction on how much I lift. I have been unable to pick up or hold my nephew since he turned 6. I fully understand the "sack of potatos" metaphor. Its heartbreaking for me that I can no longer hold and comfort him. All I can do now is sit beside his hospital bed and stroke his hair or hold his little hand. I am amazed by my wonderful sister who not only cares for my nephew but also lugs my wheelchair multiple times daily when I go on vacation to see her. You are stronger then you know hon. Never forget that.

    ReplyDelete