A blog describing the special bond I share with my special-needs daughter who was born weighing 12 oz!!
Saturday, April 30, 2011
Thirteen Candles..
I started thinking about writing this post about a month ago. It has been on my mind daily but somehow, the writer in me was not awake enough to help mold the words I wanted to say. Since the day she turned ten, I have been writing a birthday post for Alex every year and I did not want this to be the year that I ignore.
I couldn’t help but wonder why I was procrastinating all those days. I couldn’t help but ponder on why I was ignoring this task when I should have been writing this post and preparing it to be published on her birthday. It did not dawn on me until this morning why that is so. I realized as I woke up the significance of the intense emotions that I go through on this day every year. I understood that my inner writer had to acknowledge those deep feelings before I can even begin to write my annual birthday post.
A Thirteenth birthday is usually a very special event. It signifies an important stepping stone in a child’s life as that child transitions from babyhood into the teen years and continues on unto adulthood. It is a rights’ of passage for each of us and thus cannot be taken lightly. In our household, this right’s of passage is more than just a birthday. It is more than gifts, cake and candles. It is but a testimony of survival. A testimony that God works in miraculous ways in our lives. A testimony of the unconditional love that a mother has for her child. A testimony of the strength that I never, ever thought that I had in me.
As I reflect upon those past Thirteen year, I am yet again at awe and humbled by my Lord for choosing me to raise this special little girl. She is after all his Miracle child from the start. I see her today dancing to her music, playing on her computer and laughing at hers or our jokes. As I witness this, I still cannot erase the first image I had of my child thirteen years ago. An image that is ingrained in my mind and heart and can never be forgotten or replaced by any other. An image of a tiny body with a ping pong size head and spaghetti thin arms and legs. An image of a preemie born weighing only 12 ounces and measuring only 8 inches. I cannot help but reflect upon the past, upon the years that should have been filled with normal growth and happiness, but which were filled with medical horrors and fear.Years, that I do not wish upon any parent or child. Years that made us stronger and molded our destiny to bring us to this date.
As each birthday passes, I think of that first birthday that we were told would never happen. I then marvel at the approach of the second birthday which came in spite of all the medical complexities that we were dealing with. Deep down in my heart, I feel that my daughter’s true birthdays started at age ten. It was only by then that her condition was stable enough for her to start enjoying life as any other child should. However, the past is there and can never be erased.
Today, we celebrated with and for Alex. We ate, drank, danced and sang and had a wonderful day. We laughed as we cheered and said “Alex is a Teen today…Watch out world.. Here she comes..”
Happy Thirteenth Birthday Teen…
©Copyright 2011 .Najwa S. Hirn. All rights reserved
Tuesday, May 4, 2010
Little Hottie…
To many, the middle-school years experience may just flow as smoothly as puberty can allow the children during those years. To us, however, it takes a totally different aspect. You see, my daughter, Alex was born a micro-preemie and thus has special needs. She is still rather small in stature compared to the rest of the population in middle school. Due to her needs, she is placed in a special class.
As any mom of a special needs child knows, it is not easy finding the right people who you can truly rely on to take care of your child. This becomes even harder when you send your child to school hoping that the outside world will be kind to them and give them the respect and love that they truly need. It takes a very special person to bond with your child and accept them for who they truly are.
This is my daughter’s first year attending middle school and I must say that the transition has been very difficult. She has had to endure difficult classrooms and unpleasant situations until she reached to where she is today. The first sixteen weeks were pure “Hell” on her and thus on me. It tore my heart every morning to have to leave her at an environment that she hated. I prayed each day and asked God to solve this for me for I had failed to solve it myself. I pleaded to him to allow my child the happiness that she so deserves at school. As always, I left her in His loving care and knew that eventually, He will intervene.
God’s intervention came in the form of a special person whom I will call “our Angel at school”. A person like no other. A person who truly loved and bonded with Alex and treats her as if she were her own. A true angel sent from heaven. An angel who was able to see the potential in my child and contributed to Alex’s current placement thus allowing her happiness during her middle school years. . A person who, neither Alex nor I will ever forget and whom I will always be indebted to. The only person who has so lovingly termed my daughter “Little Hottie..”
© Copyright 2010 .Najwa S. Hirn. All rights reserved.
Friday, April 30, 2010
Go Alex Go..
However, bowling is exactly what Alexandra did today accompanied by her classmates and teachers, and what a day it turned out to be!! As we watched her roll down that ball this morning, we couldn't help but remember the day of her birth, twelve years ago. A day that will mark and change life as we knew it to have been to a completely new turn. A day that brought this tiny little girl into our lives and hearts. A child so small that she was termed "no bigger than a stick of butter." For twelve years ago today, our daughter, Alexandra, was born prematurely weighing only 12 ounces and measuring 8 inches in length. Twelve years ago, today, we did not know or even anticipate what the future would hold. She was the smallest baby to have been born at that hospital and as we watched her lying in the glass box that became her surrogate home for the next eight months, we definitely did not expect her to be bowling on this same day twelve years later.
Today is a special day. It is a day so different than that first day twelve years ago. It is definitely a day to celebrate her birth, her friends and her teachers. Today, we saw her enjoying herself and celebrating with her classmates. We are thankful and blessed for the little girl who has come so far. We praise God for this miracle He has brough into our lives, whom we call our daughter.
Today, Alexandra, bowled to her and our heart's content. She clapped; and watched her ball intensely heading towards the pins to strike her success. She smiled and winked our way as if to say: "see what I can do mom and dad." Her biggest gift was the acceptance and love she shared with her classmates and teachers.
We will always be indebted to those teachers and her friends who made today's birthday celebration a reality. We admire their dedication and the love they show Alex every day. She is one of the team and they have definitely brought much happiness to her school life.
Today we fought tears in our eyes to see her being included in all the commotion that a game such as bowling involves. We were drawn into the excitement when it was her turn and joined her classmates as we all cheered her on: "Go, Alex. Go.."
Happy Twelfth birthday sweetie..
Copyright 2010. Najwa S. Hirn. All rights reserved.
Monday, July 6, 2009
Mr. Jesus...
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.
Thursday, April 30, 2009
Happy Birthday Little Bit…
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...
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.
Monday, July 21, 2008
It's Just a Kid Thing..
I’ve often wondered why my daughter, Alexandra, would start acting up and demand my attention every time I am on the phone. She would be so deeply engrossed in a TV show or a computer game until I pick up the telephone. I am lucky if I am allowed five minutes to complete the call. At that moment, Alex, will use everything in her power to divert me from my intended call. The efforts may include being noisy, throwing objects on the floor or even running to the kitchen for a definitely “no-no” object. She knows when to make me jump.
I’ve always attributed these interruptions to Alex’s special-needs. A premature nervous system combined with sensory integration disorders and other medical needs must definitely be the culprit for these unexplained attention-grabbing behaviors. In my mind, I’ve rationalized the solution and thus avoided looking for a different explanation. I am blinded by the special needs and thus tend to forget that, deep down, my daughter; Alexandra is just like any other kid out there. A kid just exercising her authority and demanding mom’s full attention.
With all that in mind, I couldn’t help but smile as I listened to a radio shown a few evenings ago while driving home. The scenario that receipted during the show described exactly how my Alex would behave under similar circumstances. A listener on the show was phoning-in her request for a special song. Her small child could be heard in the background making all kinds of noise. The announcer inquired about the noise and explained that her own children exhibit similar behavior under these circumstances. She termed it as “Its Just a Kid Thing”.
I couldn’t help but smile at that moment. A cloud was finally lifted and I began to understand those concepts that have always been difficult for me to comprehend. I realized at that moment, that in spite of special-needs, a kid will always just be a kid ..
©Copyright 2008.Najwa S. Hirn. All rights reserved.