It was 8:00 a.m. this morning when the phone in our living room rang. I didn’t hear it since I was busy feeding my daughter in her room. My daughter, Alex, is g-tube by a stomach tube. That usually means being tethered to a feeding pump, and somewhat confined to one place for the hour-long duration of each feed, five times per day. That is rather tough for any child to handle since kids are usually active and on the go. To keep her occupied, I played computer games with her this morning so that we can finish the feed without too much chaos, which resulted in my missing the call.
As I listened to that message left on the answering machine ten minutes later, I could hear Granny’s voice saying: “I know it’s little bit’s birthday today and I was wondering if I can stop by to give her a hug and her card”. “Little Bit”, in this case, refers to my special needs daughter Alex, and “Granny”, in this case refers to my very dear, 90-year old special friend whom I met ten years ago.
I can’t remember the exact date or time when Granny started using this term. She seem to have been using it as far back as I can remember when referring to Alex. She is the first one who has correctly bestowed this title upon Alex, “Little Bit”. You see, my daughter was born very premature eleven years ago this date. She came into this world weighing a mere 12 ounces and measuring only 8 inches in length. At 27 weeks gestation, she should have weighed three or more times what she did. In spite of her meager stature, she made her entrance into this world by kicking her legs and arms very rapidly. She didn’t get the opportunity to exercise her lungs with a scream since the Neonatal team were quick in trying to find an oxygen tube small enough to in-tubate her with. She probably would have though, being the feisty kid that she is.
Granny’s words brought a smile to my face. It truly is “Little Bit’s” birthday today. She turns eleven today. At 7:25 p.m. to be precise. When I first laid eyes on her, eleven years ago, I had never imagined the little girl she would grow to be. I took things one day at a time and left her mainly in God’s hands. It was a long road until she came home but she finally did come, eight months later.
Today, we celebrate a birth that came way too early. We celebrate Alex and her special needs. In spite of it all, things could have turned out a lot worse that they did. Alex can see when she was given the sentence of being blind, she can walk when she was given the sentence of being in a wheel chair and she can understand and comprehend all that is said to her. She doesn’t always choose to do what we ask though and that is part of her being the feisty kid that she is.
As she smiles at me, her face shines. She tries desperately, with her very limited verbal skills to say “b’’’da” for she truly knows that it is her special day today.
Happy birthday Little bit ...
©Copyright 2009.Najwa S. Hirn. All rights reserved.
Thursday, April 30, 2009
Saturday, April 18, 2009
Dear Lord...
My sister told me yesterday that I should learn how to pray the correct way. She mentioned that I need to be more specific in asking for our needs especially my daughter, Alexandra’s needs. She said that even though God knows what is in our hearts, he wants to be asked explicitly about our needs. I’ve been thinking about this conversation and decided that I would write to you Lord and outline exactly what I have been praying for these past years. I am so much better at the written word than the spoken one and I know that you will be okay with whichever method that I chose to approach you. So here goes:
Dear Lord.. first and most of all I praise your name always in Glory. I thank you for everything that you have blessed me with in my life. I know that you have always and will always take me by the hand and lead me the right way as I stumble upon life’s challenges and hardships. I believe in you and the miracles that you have bestowed upon us, especially upon my Alex. You have held her in your palm and brought her to this point. Without your grace, she would not be here today. Before Alex was born prematurely, I had never heard of another 12 ounce, 8 inch. baby surviving. When I first laid eyes on her small stature I knew that we would all be needing your divine intervention. I had and will always have faith that she would survive but never stopped to think of the other issues that can arise from such a traumatic premature birth. I am forever grateful and indebted for her survival but I am now asking you to complete your miracles with her by improving the following health ailments to allow her to lead a more productive life.
Dear Lord.. My Alex needs to talk.. She struggles so hard to try to utter words that fail to come to her lips. I can almost hear the battle as her brain tries to formulate the words that do not come to her. Dear Lord.. Alex’s comprehension of words and instructions is so good but she lacks the expressive ability that can allow her to fully communicate with others. Dear Lord.. I have faith that you will heal Alex’s blockage that is in her brain. I can see your loving hands brushing away the bruises and clots and leaving behind a strong healthy flow of blood that will restore her language. I can almost hear her first words of praise as she thanks you for this miracle upon miracles..
Dear Lord.. My Alex needs to eat by mouth and tolerate all the foods that she eats.. As you know, she has been dependent on a stomach tube for almost eleven years. She tires out easily and swallowing becomes harder at that point. She gets stomach cramps from certain foods that she eats and thus is limited in her intake. Dear Lord.. I know that your plan is for Alex to be able to eat by mouth just like her peers and tolerate and enjoy her food. I can see your loving hands feeding her a spoon at a time and her accepting it and swallowing with no difficulty. I see her stomach digesting with no problems and tolerating a multitude of food varieties. I witness your hands leading her to the table as she becomes interested in asking for food and drink. I admire your miracles when she feeds herself and thank you for all the Glory that you have brought to us.
Dear Lord.. My Alex needs to be seizure free.. I thank you for keeping these seizures underway for many years and allowing the medication to control the frequency and severity of them but I want more for her. I have no doubt that, with your intervention, she will be medication free soon, because she becomes seizure free. I see you wiping away the abnormal electrical activities in her brain and restoring the harmony that should have always been there. I see the two of us kneeling to offer our prayer of thanks for her complete recovery.
Dear Lord.. My Alex needs to sleep through the nights. Eleven years of no sleep is starting to wear thin on her and myself. She needs to have a restful long sleep that can rejuvenate and restore her health as well as her brain. It is amazing that, in spite of the no sleep, she has been able to accomplish and learn so much and reach to this point. I see your spirit blanketing her at night as you ease all her ailments and bestow her with long restful hours of sleep. I know that I am always a better mother when I have had some sleep.
Dear Lord.. My Alex needs to be more complete and well all over. Alex’s other needs such as muscle tone, fine motor skills, allergies, potty training, aggression and more all must be addressed at this time. I am hoping that I am not being a demanding mother in asking your for all this but I trying to specify all that I can think of that is needed for her. With all those in place, she can have a better quality of life that is easier for her and our entire family dynamics.
Dear Lord.. You know that we are heading to a special prayer service tomorrow. You know what this means to us. I see you leading us in the right direction as we venture upon our trip. I see you commanding your angels to decent and envelop us with the prayers that we need as we embark unto this journey. I accept your plans for Alex and me but have faith that some things will never be the same the day after tomorrow..
©Copyright 2009.Najwa S. Hirn. All rights reserved.
Dear Lord.. first and most of all I praise your name always in Glory. I thank you for everything that you have blessed me with in my life. I know that you have always and will always take me by the hand and lead me the right way as I stumble upon life’s challenges and hardships. I believe in you and the miracles that you have bestowed upon us, especially upon my Alex. You have held her in your palm and brought her to this point. Without your grace, she would not be here today. Before Alex was born prematurely, I had never heard of another 12 ounce, 8 inch. baby surviving. When I first laid eyes on her small stature I knew that we would all be needing your divine intervention. I had and will always have faith that she would survive but never stopped to think of the other issues that can arise from such a traumatic premature birth. I am forever grateful and indebted for her survival but I am now asking you to complete your miracles with her by improving the following health ailments to allow her to lead a more productive life.
Dear Lord.. My Alex needs to talk.. She struggles so hard to try to utter words that fail to come to her lips. I can almost hear the battle as her brain tries to formulate the words that do not come to her. Dear Lord.. Alex’s comprehension of words and instructions is so good but she lacks the expressive ability that can allow her to fully communicate with others. Dear Lord.. I have faith that you will heal Alex’s blockage that is in her brain. I can see your loving hands brushing away the bruises and clots and leaving behind a strong healthy flow of blood that will restore her language. I can almost hear her first words of praise as she thanks you for this miracle upon miracles..
Dear Lord.. My Alex needs to eat by mouth and tolerate all the foods that she eats.. As you know, she has been dependent on a stomach tube for almost eleven years. She tires out easily and swallowing becomes harder at that point. She gets stomach cramps from certain foods that she eats and thus is limited in her intake. Dear Lord.. I know that your plan is for Alex to be able to eat by mouth just like her peers and tolerate and enjoy her food. I can see your loving hands feeding her a spoon at a time and her accepting it and swallowing with no difficulty. I see her stomach digesting with no problems and tolerating a multitude of food varieties. I witness your hands leading her to the table as she becomes interested in asking for food and drink. I admire your miracles when she feeds herself and thank you for all the Glory that you have brought to us.
Dear Lord.. My Alex needs to be seizure free.. I thank you for keeping these seizures underway for many years and allowing the medication to control the frequency and severity of them but I want more for her. I have no doubt that, with your intervention, she will be medication free soon, because she becomes seizure free. I see you wiping away the abnormal electrical activities in her brain and restoring the harmony that should have always been there. I see the two of us kneeling to offer our prayer of thanks for her complete recovery.
Dear Lord.. My Alex needs to sleep through the nights. Eleven years of no sleep is starting to wear thin on her and myself. She needs to have a restful long sleep that can rejuvenate and restore her health as well as her brain. It is amazing that, in spite of the no sleep, she has been able to accomplish and learn so much and reach to this point. I see your spirit blanketing her at night as you ease all her ailments and bestow her with long restful hours of sleep. I know that I am always a better mother when I have had some sleep.
Dear Lord.. My Alex needs to be more complete and well all over. Alex’s other needs such as muscle tone, fine motor skills, allergies, potty training, aggression and more all must be addressed at this time. I am hoping that I am not being a demanding mother in asking your for all this but I trying to specify all that I can think of that is needed for her. With all those in place, she can have a better quality of life that is easier for her and our entire family dynamics.
Dear Lord.. You know that we are heading to a special prayer service tomorrow. You know what this means to us. I see you leading us in the right direction as we venture upon our trip. I see you commanding your angels to decent and envelop us with the prayers that we need as we embark unto this journey. I accept your plans for Alex and me but have faith that some things will never be the same the day after tomorrow..
©Copyright 2009.Najwa S. Hirn. All rights reserved.
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