Friday, April 30, 2010

Go Alex Go..

If anyone would have told my husband and I twelve years ago that our daughter, Alexandra would be bowling with her friends for her twelfth birthday we would have looked at them with disbelief, and said :" Yeah! Right!!". We would have brushed that thought aside and concentrated on the task at hand which was praying for her survival. Our motto back then was just to take things one day, or even one minute at a time in the hopes of bringing her home some day. That day, eventually came eight months later!

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...

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.

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.

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.

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.

Saturday, June 21, 2008

The Silent Years..

One of the hardest things that a special mom has to face is the fact that her special child is not verbal. It is unfortunate that many special children do end up with no verbal skills. This may be due to neurological disorders, muscle weaknesses or other ailments that plague the special needs population. It is even harder when the causes are either un-known or not determined since this leaves no room for the “try-to-fix-it” plan of action.

Therefore, it is no surprise that this issue is one that I struggle with constantly. I worry about Alex’s needs being met in the outside world. The fact that I fully understand my daughter’s grunts, gestures and hand movements is not enough since it still doesn’t give her the tools she needs to allow others to fully understand her. It is a talking world out there. A world that is not forgiving to individuals struggling with the spoken word.

I cannot help but think about what the future will hold for my child. I pray constantly that I will always be there to protect her and interpret her needs to the outside world. I try not to think about the possibilities that someday she may have to fend for herself. I am almost tempted to produce an “Alex” only dictionary. One that can open the doors for others to understand her special signs.

In spite of her language deficit, Alexandra has struggled to learn a few simple words that she can verbalize. It is no doubt that the most important of them is “Ma Ma”. She has always been able to vocalize this word and says it proudly. This must be due to the special bond and love that her and I share that encourages her to say it so clearly.

She has recently surprised me with another form of a word that she has learned. A word that sounds like “..hpee”. She says this with a big smile on her face, as she looks my way. For anyone else, this may sound like baby talk, but for me, it is as clear as day. For only a special mom can interpret the meaning of this one. Only a special mom would know that her child is saying “happy”. Only a special mom would feel blessed and thank God that she has not failed in keeping her child happy….

©Copyright 2008.Najwa S. Hirn. All rights reserved.

Wednesday, May 28, 2008

Letting Go...

As I watch my daughter, Alexandra, take the few steps that separate me from her teacher and walk independently away to school, I cannot help but be filled with pride and happiness at this accomplishment. It is a joyous moment when a child gains independent skills that are so crucial for daily survival. This triumphant feeling is manifested a thousand times more when the child is a special needs child.

It is always difficult for any mom to let go of her child. After all, this is the helpless creature that has been totally dependent on mom up to a certain moment in time. When a child has special needs, the “letting go” concept does not exist. It does not come as a natural progression with a child’s growth but is a skill that must be learned. A special mom must be taught this new idea and totally digest it before accepting its consequences. After all, this is the helpless creature that she had saved its life with Oxygen, rushed to the hospital on more than one too many occasion, fed by a tube and dedicated her entire existence for. With that in mind, it is almost impossible to completely “let go”.

This foreign endeavor finally came upon Alex and I recently. For the past four years, I have held her hand and walked her to the teacher daily. It never even occurred to me that, at some point, she would be ready to walk herself without my support. Thus the past few weeks have brought about a new dimension to Alex’s independence. They have shown me that she is capable of more than I, as a mom, can always see. They have taught me the meaning of letting go slowly as I cherish each new milestone that is celebrated in both of our lives.

As she made her way to her classmates and teacher this morning, she turned around, mid way across her path. She gave me the encouraging and mischievous grin that I associate with my child. I could almost hear her say: “I’ll be fine mommy”…

©Copyright 2008.Najwa S. Hirn. All rights reserved.