A Micro Preemie named "Alex"

 A Micro Preemie named "Alex"

April is a special month for our family. It is the month my daughter Alex's story starts. Alex celebrates her birthday in a few days. My kidney warrior was born at at 27 weeks gestation weighing only 12 ounces at birth (349 grams). To celebrate her birthday this year I have decided to share her story starting with her seven month stay at the neonatal intensive care unit (NICU) after birth. It is a story of Faith, Hope, Love and most of all of God’s miraculous intervention that made it possible for Alexandra to survive. It is a story of how God pulled us through those difficult times and gave us the strength to keep on going day after long day and night after night. I hope that it can bring encouragement to other parents dealing with the birth of a preemie and a sick child. Don't give up on your little one. The book is now available on kindle as well as a paperback format. Alex's birth weight and length of stay in NICU are the two numbers I chose to price the two formats of the book.

Sweet Sixteen..

As I helped my special needs daughter, Alexandra, get ready for school this morning, I noticed that her hair band had fallen and her gorgeous long hair was fanning her shoulders and back.  I had recently started using my shampoo and conditioner to wash her hair.  The silkiness brought on by the combination of the two has been contributing to the band falling out on more occasion than one. 

I saw her tilt her head just so to move the silky strands as she used her hand to brush the hair aside.  The gesture was so beautiful that I stared for a few minutes and allowed her to continue moving her hair before I intervened to braid it for her as I normally do in the morning.

I realized at that point that I have just found the words I have been so desperately searching for this past month to use for my daughter’s birthday post.  I had struggled for days sitting at the computer thinking about the upcoming birthday, my commitment to write a birthday post and what it all meant to me. 

I have been trying to write this post for almost a month.  I guess that, after all these years, this post still remains the most difficult as well as joyous for me to write. Difficult, because it brings back the memories of days and nights that I have been trying to burry and forget. Joyous, for it reminds me of the miraculous child that was gifted to me;  Sixteen years ago to care for and nurture.

Alexandra’s grand entry into the world was memorable to say the least.  Her micro preemie stature of a mere 12 ounces in weight and 8 inches in height broke the record of the smallest preemie baby born at that hospital. Her Seven plus months of stay in the Neonatal Intensive Care Unit (NICU)  was also the longest period any preemie had stayed.

This year has brought on so many new things in Alex’s and our lives. My daughter is flourishing and enjoying more adult-like activities. In spite of her special needs, she attended her first dance only a few weeks ago and what an event that was. We were the proudest parents to be able to drop her off at the dance hall on a Friday night and leave her for sometime before going back to pick her up. A normal activity to some, but a huge step for us.

A few weeks after the dance, Alex was able to participate in a fund raiser walk for Easter Seals as their ambassador.  She had been involved with our local Easter Seals on and off for the past thirteen years. It was a proud moment when they requested that she be one of the ambassadors.  It was a thrill to start an “Team Alex” and lobby for walkers.  I did not fathom, at the time, at how the turnout would be.  The response and support from our family and friends was overwhelming; joyous; and emotional. I had known that Alex had touched many lives but did not realize, until that moment, how many she had actually touched.  The love that came with each support was unmeasurable. The actual event proved to be a great success.

As my daughter’s birthday approached this year, I finally started what I had promised myself that I would do years ago and that is writing her story in a book. This book will be the legacy I leave for her and my gift to her for the future.  The first book documents the beginning and her Seven months stay in the Neonatal Intensive Care unit. I am still at awe when I read the notes; clinical resume;  and lists that I have kept together all these years.  The six page clinical resume still amazes me.  I continue to thank God each and every day for the miracle of Alex. I am humbled at the fact that he had brought her into my life and entrusted me to care for her. I tear at the medical words written on those pages, so long ago,  but know, without a shadow of the doubt, that God had made it all possible. 

This morning’s hair incident may not be significant to others but to me it signifies a lot. This simple gesture signifies Alex’s new teen personality. I had used baby shampoo for so many years that using an adult shampoo was a new experience for me.  As I shopped for her birthday presents, I had to continue to remind myself that my daughter is no longer a baby or toddler.  She is a teenager with a teen’s personality and traits.  I have now graduated to shopping in the teen aisle.  A new revelation  but just the beginning of a bright and beautiful future.

As I end this post, I quote from the Thank you dedication I wrote in Alex’s book:

“To God, for with him everything is possible and nothing is impossible”

Happy Sweet Sixteen Alex..

© Copyright 2014 .Najwa S. Hirn. All rights reserved

Give It To God...

As we sail through this journey we call life, we come across different people; some good, some bad and others in between.  Only a certain few succeed in leaving an impact on our lives.  One of those people is a teacher/friend whom I will refer to as Mrs. “R”.

The longer I know Mrs. “R”, the more amazed I am by her. I admire her strength; her calmness and her smiling face, no matter what she was going through.  I respect her as a person and a friend and most of all I applaud her unfailing “Rock-as-Gibraltar” Faith that has allowed her to surmount tremendous difficulties.

Mrs. “R” walked into our lives more than ten years ago when she literally walked into our home to work with my special needs daughter. We developed a friendship that blossomed for sometime but then drifted apart due to no fault of hers.  I was riding on the “I-will-fix-my-special-needs-child” wagon and did not want or need any diversion from that mission. Anyone else would have probably held a grudge, but not Mrs. “R”.  I was happy that we were able to pick up our friendship a few years later and resume it as if nothing had ever occurred in the past. 

Mrs. “R” became very ill with cancer this past fall. I desperately wanted to stand by her side and help in any way that I could.  It seems that God led me in a different way for my mother fell very ill also and was diagnosed with a brain aneurism only a week after Mrs. “R’s” diagnoses.  My family was thrown into a complex whirlwind of medical as well as emotional traumas.  Not only did the procedure to save my mother had left her disabled  but the lack of medical insurance contributed to mountains of financial burdens that added more stress to the situation. Needless to say, our sorrows consumed our family and we just had no more reserve for anything else.

In spite of all this, I never once forgot Mrs. “R”. I wondered about how she was doing and prayed for whatever God’s plan was for her.  He had not let her down in the past, so I knew that His intervention would pull her through this time around also.   

I was both glad and relieved when I saw Mrs. “R” on the first day of summer school. She had overcome her illness and was ready to get back to doing what she loved the most, being a teacher to “Her” special needs kids.  She was assigned a class at my special needs daughter’s summer school and looked wonderful as she welcomed “Her” kids to school. 

As we hugged and embraced that first morning, I finally explained what has been going on in my family’s situation to Mrs. “R”. I really wanted her to know that I had not forgotten about her.  She informed me of her ordeal and what had happened during the months I couldn’t contact her.  It has been a very rocky road for both Mrs. “R” and my family.  In spite of all that, Mrs. “R” continued to smile.  She brightened up my morning with that smile.  It didn’t surprise me at all to find that she was

comforting me when I should have been comforting her.  Upon listening to my story, she held my hands and looked straight into my eyes and sealed our friendship with one statement: “Just give it to God and don’t ever take it back”…

Thank you Mrs. “R” for being the type of person God has intended for you to be.

© Copyright 2013 .Najwa S. Hirn. All rights reserved

Home Coming Queen..

Around this time every year, Nature celebrates the coming of spring.  Flowers and shrubs begin to erupt slowly. As winter bids its farewell, I see the new greenery mixed with a rainbow of spring colors emerging everywhere and adorning God’s beautiful earth. New life starts peaking gradually, enveloping us with its glory and promising us the wonders that God has created.

Spring brings the birth of many things, among them, my special needs daughter, Alexandra.  It has been fifteen years since my child entered the world so unexpectedly thirteen weeks too soon.  She came, but a mere, twelve ounces in weight and eight inches in length. In spite of this, though, she arrived kicking her legs and arms just as any other new born would. She was claiming this world as her own. I can almost hear her stating: “look out world for here I come”.

For the past five years, since Alex’s tenth birthday to be exact, I had taken it upon myself to write a birthday post for her. It is my way of honoring my daughter for what she has had to endure during the first years of her life. It is my way of celebrating her and thanking God for her existence.   It is my way of trying to make right what obviously went wrong during a pregnancy that I thought was fine.   After all, a mother’s first job is to ensure her child’s safety and happiness and I had so desperately wanted that to be true for us, on that day, Fifteen years ago.  It is my way of erasing the scars that are still visible on my daughter’s skin and will forever be etched in my heart and mind.

It has been an interesting year. A transitional year in so many ways. Alexandra entered her first year of high school.  This change has been harder on me than on her. She seems to adjust well and thrive on social skills that took so many years to develop. She will be participating in her first school dance three days after her birthday. To other mothers, this may be just a normal activity during the teen years. For me, however, this is a giant step.  I am almost tempted to contact her NICU nurses and inform them of this event. They will surely share this joy with me. To even imagine that the NICU’s smallest surviving infant and longest resident will be going to a school dance is beyond anyone’s wildest dreams. I will have to quote my sister’s favorite recent saying: “God is so Faithful”.

Our lives have changed to a better and stable existence the past few years. Each new “medically- stable” day brings better promises and a chance for a brighter future. In spite of the still lingering special needs challenges we face daily,  we are now able to participate in more normal activities such as attending full time school, shopping or visiting relatives. It has taken strong faith and many years of therapies, care and love to bring Alexandra to this point. The path was hard, but the outcome is worth it. 

These “medically-stable” years have allowed Alexandra’s funny personality to slowly emerge. She is now given a chance to show her true character and build those habits that are a part of any growing child.  Among her favorite habits is a serious wave that she uses to greet whomever she comes across.  As a matter of fact, her favorite pass time is to make the rounds in school waving a greeting to anyone in sight.  It is truly a delight to watch Alexandra greeting teachers and staff as she wonders about her day. A few years ago, she developed and perfected this wave that has become a big part of who Alex is.  It is this signature wave that has earned her the title of “Home Coming Queen”.

I am blessed to see this wave every day. It brightens my heart when she uses it as I drop her off to school in the morning and when I pick her up at the end of the day. A simple gesture, yet so powerful.  A true Royal wave, for Alexandra has fought and earned this royalty every step of the way. A true Seal-of-Faith wave, for God’s faithfulness has made all this possible..

Happy Fifteenth birthday “Home Coming Queen!”….

©  Copyright 2013 .Najwa S. Hirn. All rights reserved

Rites of Passage..

As I witness my daughter, Alexandra, walk across the stage in her school cafeteria to receive an award I cannot help but be filled with pride and joy. My eyes tear when I see her get up and approach the stage as her name is called. She, dutifully, allows an attendant to help her up the steps to accept her recognition. She acts as if she has done this a million times before as she walks over to shake the presenter’s hand and hold on to her certificate. I never, in my wildest dreams thought it ever possible to witness this event. I was mesmerized by so many things but most of all I was mesmerized by Alex who is involved in an activity that is considered to be very normal among regular students her age.

I am lost for words as I try to describe the emotions that were going through my heart and entire being at that moment. Her entire actions tonight told me that she knew exactly what she was doing. She was aware that she should be present at this eighth grade award ceremony. She behaved appropriately and made myself and everyone else so proud to see her achievement.

This past month has been filled with events at my daughter’s middle school celebrating the eighth graders graduating and moving to High school. It was only two weeks ago when Alexandra was given the opportunity to participate in what they term as “Crazy 8”. This was an entire day dedicated by the school to celebrate all the eighth graders. An actual “Party” day, filled with all their heart’s desires from slides to ice –cones to dancing and mingling. A beautiful day that celebrated not only those teen’s innocent childhood that they try desperately to hide at this stage of their lives, but also their emerging adulthood that they are moving towards.

It has been an incredible three years, my daughter’s middle school years. I am thankful for every minute and day that has passed. This wonderful “Rites of passage” has not just been for her but for me also. As I see her participating in whatever normalcy the real world allows her, I thank the Lord for bringing her to this point and allowing me to share these precious moments with her. I recall her rough start and see the tiny 12 ounce baby who was forced into this world way too early.

My daughter is my hero,I admire her strength, her love and endurance. I am blessed to have been chosen to be the one to take care of her. I still wonder why things had turned out the way they did for her and I. Why, was she born so prematurely, weighing 12 ounces and measuring 8 inches in length and why it was necessary to go through our preemie/special needs “Rites’ of passage” that we have endured for over ten years. I still wonder what God’s plans may be but I know they are good ones.

As the evening drew to an end with cheers, tears and hugs, I am amazed at how far, Alexandra has come. I am thankful and blessed that I am witnessing and sharing these new and much welcomed “Rites of Passage” with her and cannot wait to find out what the future may hold ..

Congratulations 8th grader..

© Copyright 2012 .Najwa S. Hirn. All rights reserved

Butterfly Kisses..

It is this time of year again when I celebrate my daughter, Alexandra’s birthday. I had taken it upon myself to write a birthday post for Alex ever since she turned ten. In my books, that is the day that I truly started celebrating her life. That is the day that commenced the second ten years of Alex’s life which I call the more “stable years”.

For all of you who do not know Alex’s story, I can refresh by saying that Alex was born a micro preemie fourteen years ago due to preeclampsia complications that I suffered suddenly towards the end of my fifth month of pregnancy. Somehow, this was never medically caught on earlier in the trimesters and thus the necessity of the emergency c-section at twenty six weeks and the sudden birth of a tiny 12 ounce, 8” long baby who was to change my life as I knew it. A baby that was no bigger that a “stick of butter” as she was referred to at the NICU and no heavier than a “can of soda”. A baby that I could not hold for two months and could not bring home for eight.

The first ten years were somewhat of a blur. They were mainly the “survival” years. The focus, as you may gather, was mainly to help Alex survive. In the midst of hospital visits, therapies and late night emergency room admissions, both Alex and I were mainly going on what I may term now as “auto-pilot”. As she fought with every tiny cell of her body to survive, I really didn’t have time to concentrate on anything but counting calories, calculating fluid intake and output, checking oxygen levels, administering meds and basically becoming the nurse, therapist and medical personnel that I never wanted to be. Notice, I failed to even include “mom” in the previous list. All I really wanted to be was her “mom”.

The past is the past and I cannot change it. It is time to focus on the future and live for that instead. I am truly amazed and blessed when I see my daughter today. She will always have special needs; I’ve finally come to grips with that. I had once surrendered her in Jesus’ arms and I continue to do that every single day. If He chose for her to have special needs, so be it. We are blessed with those needs for that means that she is still here today and getting ready to celebrate her birthday. I shudder as I remember the first few years, and embrace what we have now for the outcome could have been so much graver. She taught me about life and how fragile it can be. She taught me strength like I never knew I had and patience that I thought I used to have. She taught me acceptance and unconditional love.

I love her for who she is. A tiny soul full of life. A soul, blessed by the Lord, for it is He, who gave her, and I the strength to survive what we have gone through. I am glad to hear people commenting to me that my daughter is happy for that tells me that I have not failed her in that avenue. I hear her laughter often. I see her dancing and singing to her favorite music. I hold her when she needs me and help her along the way. But most of all, in spite of her turning fourteen, I can still say that I am blessed to experience her “Butterfly Kisses” as she goes about her day..

Happy Fourteen Sweetie!

©Copyright 2012 .Najwa S. Hirn. All rights reserved

The Name Stamp..

A couple of days ago I had the opportunity to participate in my daughter’s transitional IEP. As a parent of a special needs child, one becomes familiar with an IEP or “Individualized Education Plan” meeting. This meeting becomes a natural part of the path we take as we raise our special needs children. It is usually held once a year during the school year with the parent being invited to attend for the goal of discussing the status of the child at school and mapping out future goals and objectives as each school year folds and unfolds.

During the past eleven years, I have attended numerous IEP’s that It has become kind of second nature to me. I am no longer intimidated by the process like I was years ago during the elementary school year. These meeting seem like they grew on me as the years went by and thus I went into this one expecting the usual discussion that normally had taken place in the past.

With that in mind, I was mildly surprised during the middle of this IEP when my daughter, Alexandra, was called in the room. I did not know what to expect from that since she has never been invited to one of those before. I was even more surprised to see her sitting so appropriately by my side around the large conference table and allowing the teacher to assist her in stamping her name on the IEP forms. I had failed to realize that, as per IEP regulations, a student transitioning into high school is given the opportunity to participate in their IEP and sign, or in our case, stamp, their name as an approval on the necessary documents discussed. She dutifully stamped her name underneath where I had originally signed for her.

As I watched her do this, I reflect upon the past yet once again. I see her as the tiny 12 oz baby that was delivered on an emergency basis almost fourteen years ago. I recall the glass box that housed her for eight months. I see the wires that wrapped her tiny body. I remember the first ten long years of hardships. Ten years filled with medical interventions, therapies, and illnesses. Ten long years of suffering for my child that I wish I could have erased or replaced by a much happier time.
This has been a memorable IEP; my daughter’s” transitional to high” school IEP. I never thought, in my wildest dreams, that I would come to witness this day. Even though the past seem as if it were a dream, it is truly a reality. A reality ingrained in our thoughts and lives. A reality chiseled in our hearts. A reality that brought about this beautiful child who is taking her responsibility so much to heart and stamping her name on documents that she trusts that I took care of for her. 
As I see the name “ALEX” being stamped on one page after another, I dutifully promise my child that she can trust that I will always do the correct thing by her. I may not be able to erase or change the past, but I will always be there helping her along the way to a brighter future..

Copyright 2012 .Najwa S. Hirn. All rights reserved