A few weeks ago, my daughter’s homebound teacher was very surprised to see my special needs daughter run to the fridge in my kitchen, pick up the picture of Jesus that I have placed there and put it against her face. She then attempted to put it back with, my help, securely under the magnets that I use on my fridge.
The teacher couldn’t help but ask me “what is she doing?” She thought that Alex was about to throw the picture on the ground and was utterly shocked to see Alex attempt to kiss the picture and put it back. I turned to the teacher’s puzzled face smiling and responded, “She is greeting and kissing Mr. Jesus”. As I saw an additional puzzled look come over the teacher’s face, I tried to explain to her how Alex came about to know Mr. Jesus when I introduced his picture to her at my parent’s home many years ago.
Being a strong Catholic family, my parents pride themselves in displaying pictures of Jesus and Mary on their walls. I had grown up with similar surroundings, thus am used to acknowledging these spiritual images as I went about my day.
It is this strong religious upbringing that I hold dear to my heart and wish to pass on to my daughter. For any other family, this would come as a natural progression as a child grows and develops better understanding of certain expectations and different roles. However, things started out very different for our family. You see, my daughter, Alexandra, was born very prematurely. She weighed only 12 ounces and measured 8 inches at birth. She was hospitalized for the first eight months of her life, followed by many years of medical complexities, therapies and other interventions. In spite of this rough beginning, I took every opportunity to instill whatever religious and spiritual foundation I thought that my child would understand. I honestly was never sure what she could pick up on and what she couldn’t, but I constantly repeated the terms, gestures, little prayers or whatever was appropriate for a certain situation.
Therefore, as long as I can remember, I have carried my daughter to the image of Jesus displayed on my parents bedroom wall, touched it lovingly, completed the quick sign of the cross and whispered in her ears that we are greeting “Mr. Jesus”. I honestly don’t know where I came up with that name and why.
In spite of her special needs, I believe that my daughter has been listening to me all those years. She recognizes this picture now and whenever we are visiting my parents and I ask her to “go say hello to Mr. Jesus”, she will run to the room and wave her arm while smiling at the picture. She is still currently too short to reach it on the wall.
I have been thrilled to witness her completing the greetings that I did not, for the life of me, even think that she may recognize another picture of Jesus in a different location. She made this association so well when I recently put up a smaller picture of Jesus on my fridge. I had tears in my eyes when I saw her running to it, waving, and taking it from underneath the magnets that held it in place and placing it on her lips to give a little kiss to her friend and savior “Mr. Jesus”.
I didn’t understand the extent of her comprehension and association of objects and pictures until I witnessed her doing this on almost a daily basis. I felt pride explaining it to the teacher and others who have visited my home and seen her doing it, not just because of the cognitive skill this displays but because I had taught this to her.
I realized that if I didn’t teach her anything at all, at least I taught her the most important thing: how to love “ Mr. Jesus”.
©Copyright 2009.Najwa S. Hirn. All rights reserved.
Monday, July 6, 2009
Thursday, April 30, 2009
Happy Birthday Little Bit…
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.
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.
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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