Hope for peace.

I am the mother of a handicapped child.  It's very odd when you come to that realization.  When people stop asking if she can crawl, sit up, or walk yet.  They are tired of hearing my disappointing responses.  Instead they ask, how is she handling her new special diet, has she had anymore seizures, and when is her next doctors appointment?  I hardly recognize myself anymore.  I have seen tired, run down parents, throughout my life, but nothing compares to the first time you look in the mirror yourself.  You haven't showered in two days, the bags under your eyes say "I'm tired, I'm sad, I'm hurt, I'm angry, and Whats the point?"  You look at your makeup bag sitting on the bathroom counter which hasn't been touched in weeks and wonder when you will feel enthusiastic enough to put on a little mascara.  Day after day, hour after hour of pill crushing, food weighing, and watching your eleven month old child lay on the couch as though she is only a day old gets tedious, and mind numbing.  You can hardly hold a conversation with another adult because the only thing your mind will let you think about is when the next medicine dose is, and how you will afford to get your child to her doctors appointment that is two hours away four or five times this month.  Still though you find the courage, and the strength to push on.  Your husband gets up for the 5:30am medicine shift while you try to catch a good two hours of un-interrupted sleep before he goes to work, but your mind somehow won't let you.  You worry, "Did she have a seizure this morning when daddy woke her up?; Did she finish her bottle this time?; Did she get the correct amount of pills this morning?" and when your dear husband puts her back to bed so that he can shower and make himself presentable for a long work day, you lay there wondering, "Is she awake?; Does she need me?; Is she afraid laying there in complete silence and darkness wondering where her parents are because she cannot see that she is in her crib safe in her room." And then its 8:00am, you get up because your tired of fighting the covers that have somehow wrapped so tightly around you in your tossing and turning, only to find that she has been asleep all this time and there was nothing to worry about.  The day presses on, you weigh out her butter, oatmeal and applesauce, crush a few pills and wake her up for breakfast, and when she does not help while being lifted you pull a muscle nearly every morning lifting 28lbs of dead weight out of her crib. At breakfast she gags through the entire meal but still you encourage her to eat by shoveling in the food and letting her chase it down with tiny amounts of water.  After breakfast it's play time, although she does not want to play, you sit her up on the floor surrounding by pillows and try to catch her interest in anything possible.  She cries the entire time, not giving a damn about the zillions of toys and bells and balls spread around her and after 30 minutes of torture you sit there wondering again, "Whats the point?" Wishing for some kind of glimpse into the future so that you could see if all this pushing for her to learn is worth it.  You ask yourself, "What if she never sits up on her own?"  How would I feel looking back on these moments that could have been spent cuddling and making her happy, but instead were spent forcing her to learn new things which she absolutely does not want to do all to find out in the end that she will never learn them and all of that precious time was wasted.  Everyday is a step forward and then two steps back.  You remember last week that you were taking pictures of your sweet 11 month old and gloating to friends and family that she is finally holding a sippy cup for the first time but now when you try to give it to her and show her the handles she cries, chokes on the milk and her hands go limp as if she cannot remember that she learned this only a few days ago.  So, you start over, slowly introducing the new nipple, slowly putting her hands on the handles, and then sitting next to her supporting the end of the bottle while pulling it in and out of her mouth until she remembers not to suck too hard or she will drown.  The rest of the day is spent crushing pills, weighing food, watching her sleep and dreaming of the day when she might wake up and call MAMA! Or simply smile at the sound of my voice.  That day will come.  I only let myself believe that because it is the only thing that gets me through the day.  Only time will tell, until then I will put a smile on my face so that others do not worry,  I will make dinner for my husband because that is what good wives do, I will go to church, give compliments, take interest in other peoples lives, and I will love my child, because no matter how hard the day is or how distant my child feels to me, or how empty her eyes are, I know that she loves me too.  Our bond is strong, I feel her pain when she hurts, I weep when she is sad, and I dream when she is sleeping.  I will use my strength to carry her now and always.  I am the mother of a handicapped child, I am proud, wise, strong, and forever grateful for she is my angel, my soul, my life.