New Year Wishes..

Wishing you a world filled with blessings, happiness, health and
prosperity for the New Year.

Happy New Year from our home to yours..

http://www.awesomebackgrounds.com/

©Copyright 2007.Najwa S. Hirn. All rights reserved

A Christmas Eve Wish..

I wish you a day of happiness and perfection-
little bite-size pieces of perfection that
give you the funny feeling that the Lord
is smiling on you, holding you so gently
because you are someone special and rare
-author unkown-

-image source/e-card/author unkown-

Christmas is coming!! What a joyous time of year! A time to celebrate and rejoice as we praise and worship; a time for friends and family gatherings and an abundant flow of love and affection. What better time is there to wish our special kids the true blessings of Christmas and that is true happiness and perfection. As the Christmas rush takes over, we must never forget the true meaning of this very special day, which are fond memories and love as we welcome the New Year.

With each passing year new memories are created in our household. As my daughter, Alex, develops new skills, we add those to our Christmas treasure box. This year she helped me with the Christmas tree. She handed me branches out of the box as we put up the tree together. She marveled at the lights and helped me place our Christmas cards among the tree branches, as has been my tradition for the past few years. I started this a few years ago to avoid tempting Alex with shiny ornaments. Next year, I think it will be safe to reopen those ornament boxes that have been packed away for nearly ten years.

As Christmas approaches tomorrow, I wish you my dear Alex a day of happiness and perfection because you are a very special and rare gift that was entrusted in my care..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

I Believe In Santa..

http://www.art.com/asp/sp-asp/_/pd--10310669/Santa_in_Brown_Hood_with_Children.htm

Having faith in Santa Claus

Is not for just the young,

I know I'll keep proclaiming him

As long as I've a tongue.

And even though I see the gent

Unmasked before my eyes,

Revealing some familiar friend

Who's donned the quaint disguise,

It doesn't change my mind a bit;

I'll still believe, because

There's more than whiskers and a suit

To dear old Santa Claus;

Bright hopes there are,

And dreams come true,

Good cheer, unselfish sharing

Personified by gifts of love

Within the pack he's bearing.

To call these angels "Santa Claus"

Is surely not deceiving,

So I, for one, will never scoff

But go right on believing.

-author unkown-

I had the opportunity to witness one of the most amazing sights today. I watched the faces of special needs kids’ light up as they sat on Santa’s lap and received a Christmas present. This was not a mall event, but rather an event that took place at my daughter’s school this morning. I was fortunate enough this year to be invited by the teacher to come by and watch as my Alex collected her gift.

I cannot begin to express the emotions that went through me as I watched all those kids. Tears of joy rolled down my cheeks uncontrollably as each child smiled and hugged Santa Claus while holding their precious wrapped box to dear life.

The moment came when it was my daughter’s turn to receive her gift. My surprise and pride was insurmountable as I observed her walking to Santa. She tolerated the event so well, sitting on his lap just like all the other children. It was a moment that I wouldn’t trade for the world. A moment of hope and admiration at this small child that has become my life. A moment of dreams coming true and a belief in a bright future that may come our way.

What a noble thing it is for someone to bring such joy to special kids. My hats and thanks go out to Santa who was able to give each child a few moments of normalcy and happiness. Who said there was no Santa anyway!!

©Copyright 2007.Najwa S. Hirn. All rights reserved.

You Are All I Have..

The seasons change

but love remains

growing like a rose in spring

all the summer sun can bring

I will find it when I'm with you

You are all I have

By Demis Roussos

I can’t think of any greater love than a love that a mom feels for her child. It is one of those special bonds that cannot be truly measured or felt. It is just there. That is how my bond is with my daughter, Alexandra. I see her face shine when I walk into a room and that means the world to me. She runs as fast as her little legs will allow her to reach me as I hold out my arms to embrace her. Those moments are priceless and I wouldn’t change them for anything.

It is without doubt then that anything I hear or see brings Alex’s image to my mind. The above lyrics are part of an old song by Demis Roussos. You see, my daughter has an ear for music and seems to pick her favorites as we listen to our different CD options. She definitely has an ear for my ethnic culture and loves to listen to world music. The above song is among a collection on a CD that has become one of her top ten listened to, and requested music. For anyone who is not familiar as to who Demis Roussos is, please go to: Demis Roussos. You can also view this song on You Tube at this link:
http://www.youtube.com/watch?v=Ifl6EzsZ0rs

Even though the above song is not about a child, it still describes a strong feeling that any mom can experience with her child. As each day goes by, the bond strengthens. There is never a moment that passes that I don’t think about Alex and marvel at this connections that only a mom can feel.

©Copyright 2007.Najwa S. Hirn. All rights reserved.

What's In A Label..

http://www.auntymdesigns.com/html/aunty_m_samples_2.html

I just received a letter from my daughter's neurologist diagnosing her with Autism. It wasn't a total surprise since we had discussed this during her last follow up and I was expecting it. However, talking about a diagnosis is one thing and seeing it in print is another. After all, this is my child who is being labeled. This is the little girl that I had built all my hopes and dreams on. The same baby that I had hoped one day would say words like: "I love you mommy". A child of my dreams who should have accomplished all the "given" childhood milestones by now just like all the other kids out there.

It is interesting that this diagnosis comes at such a time. Autism has become one of those disorders that are experiencing a huge rise of incidences. It seems that it appears everywhere we turn nowadays. New articles come out daily trying to answer the “Why’s” and the “how did this happen to my child?” questions. Various factors such as environment, nutrition, vaccines and such are being blamed to this increase. But maybe, the cases aren’t increasing at all; maybe, they are just “coming out of the closet”.

Even though an autistic diagnosis can be devastating to the entire family, it should still be embraced with a big heart. With that said, I found the most wonderful definition for the word “Autism” on the Internet. I want to share this term with all the special parents out there who are struggling with this invisible enemy that is stealing our kids.

Therefore, the new definition of “Autism” is a child who is:
A wesome
U ndaunted
T alented
I mmeasurable
S ensational
M agnificent

My daughter, Alex, is each and every one of the above terms.
So what is a label anyway? It is whatever you want your child to be…

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Visitor..

No matter how hard I tried, I just couldn’t succeed in keeping the fall viruses out of our house this past week. Two weeks to be exact! My daughter, Alex, started coming down with it a few days before Thanksgiving. I was graced with it the day after Thanksgiving. It seems that this year’s visitor is mighty strong. It defied all the precautions and remedies that I tried to take, thus rendering me helpless and without a choice but to visit my doctor. I have to say that, after a week of antibiotics, and some bed rest, I am still not 100 percent cured. The congestion in me head is still there and my strength is very depleted.

It is not uncommon for these viruses to invade our Florida environment this time of year. Travelers are down here vacationing; the temps are doing the up and down yo-yo; and things are just getting too hectic with the holidays just around the corner.

In spite of feeling so miserable this past week with flue like symptoms, I was still overjoyed to learn how important my family was. My husband took over our daughter’s full care last weekend, thus allowing me a much needed bed stay all day, and Alex must have known that mommy was not well because she continued to come in the room, shower my face with kisses and leave me alone to rest. It was as if she was saying: “my kisses will make you feel better mommy.”

She was right! Her kisses had a special healing touch, and her smile just brightened up my every waking moment. I knew that if she could, she would even bring me juice and food on a tray. One day that will happen I’m sure. For now though, I am content with the cuddles!!

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Thanksgiving Blessings..

By Ruyi @ Hellen on Flickr

www.flickr.com

Autumn Showers.. when angels pass by and sprinkle little blessings on all the earth.
Wishing you angel-blessings today and everyday..

-author unkown-

The above words came on a thanksgiving card that I received by email from a friend. As I read each word, I pictured my daughter, Alexandra. Everything about the card reminded me of her. She was given to me by God and delivered by his special angels. She is definitely the little blessing sprinkled unto my life like autumn showers.

I am blessed this thanksgiving to have my daughter and my family. I am thankful that my friend’s child is doing well and out of the hospital. I am humbled to have been chosen to be a special mom. I am thrilled to have been sprinkled by autumn showers..

Here’s wishing all of you a very Happy Thanksgiving!

©Copyright 2007.Najwa S. Hirn. All rights reserved.

A Prayer For You..

I can’t believe that it’s been five days since my last post. I’ve tried to be very diligent about posting regularly and am rather ashamed at this lengthy delay. Life’s daily needs has a strange way of catching up with us, thus leading us on a different route than what we intended for ourselves. In my situation, my daughter, Alex has not had a good night sleep for the past five days. She seems congested and not herself. I pray for her well being as well as the well being of all the other children out there. After all, this is the flu season and our Florida weather has been playing the roller coaster game again. One day, the temps are barely 60 while the next day it is 80. This drastic change can play havoc on any system. At least we are blessed with constant sunshine so we can’t complain.

As the thanksgiving holiday approaches, I wanted to write a special post for my daughter and all the other kids out there, special or not. I’ve been thinking about this for a few days and was fortunate to find this special prayer among some old papers that I had saved. Interesting enough, I was looking for something altogether different when I came upon these special words. God has a strange way of leading us to what he wants us to find.
So here it is, a special prayer for a special girl named Alexandra and to all the other special kids out there. Happy Thanksgiving everyone!

I Said a Prayer for You Today

I said a prayer for you today,
And know God must have heard.
I felt the answer in my heart,
Although he spoke no words.
I didn’t ask for wealth or fame,
I knew you wouldn’t mind.
I asked Him to send treasures,
Of a far more lasting kind.
I asked that He’d be near you,
At the start of each new day.
To grant you health and blessings,
And friends to share your way.
I asked for happiness for you,
In all things great and small.
But it was for His loving care,
I prayed the most of all.
-author unkown-

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Love Of My Life..

If there is one thing that I’ve learned by being a special mom is never to let my guard down when it comes to my daughter Alex. It is hard to remember this when our special kids are medically stable. We think that the picture is rosy and all will always be well. We either forget or bury the uncertainties in order to experience somewhat of a normalcy in our family life.

This has been the case for a dear friend of mine. Her special needs daughter has needed emergency medical attention at a specialized pediatric hospital this week. She came within minutes of needing a “Tracheotomy”. My friend has been very distraught. I heard the fear, anger and helplessness in her voice as she told me yesterday that her daughter is, and I quote:”She is the love of my Life. I couldn’t bear to lose her”. My heart was breaking for her anguish since the most I could do was offer words of support and encouragement. I could almost feel the fear in my friend's voice since I had felt this with Alex many times in the past.

It is without doubt that my encouraging words for her came from God. The situation was so grave that it was difficult for me to remain as strong as I did for her sake. My words came from the heart. They came from the soul of another special mom who understood. They were derived from years of anguish, stress and fear, but most of all they emerged from such strong love that cannot be surmounted.

It was thrilling to hear much better news about my friend’s child today. Her condition is improving slowly. The joy in her mother’s voice is intense. Her life was given back to her. God has definitely been watching over her and her precious child. He, yet again, has created a miracle..

My friend was so right. When God entrusts us with a special child, that child becomes “The love of our lives”..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Perfection..

When a woman desires to have a child she will pray for the perfect baby. She will imagine what her child might look like. She can almost picture all the beautiful things that child will be able to accomplish. Basically she will long for a perfect child.
But what is perfection anyway? Is it a child who may get involved with the wrong crowd, or is it a child who may choose to lie or steel when they get older. Neither of the above is right; it is a happy, loving child who will bring joy and abundance daily.

In my eyes, my daughter, Alexandra is a perfect child in so many ways. In the way she hugs or kisses; or in the way her little face shines up when I pick her up at school. I see her bright eyes scanning the horizon looking out for my appearance. I recognize the wide smile that brightens her face when I finally show up. All her misgivings disappear during those times. Her angelic perfection is the only thing that shines through!!

MY PERFECT CHILD

As my children were born,I wanted them to be perfect.

When they were babies,I wanted them to smile

And be content playing with their toys.
I wanted them to be happy

And to laugh continually

In stead of crying and being demanding.

I wanted them to see the beautiful side of life.
As they grew older,I wanted them to be giving instead of selfish.

I wanted them to skip the terrible twos.

I wanted them to stay innocent forever.
As they became teen-agers,I wanted them to be obedient and not rebellious,

Mannerly and not mouthy.

I wanted them to be full of love,Gentle and kind hearted.
"Oh, God, give me a child like this" was often my prayer.
One day he did.
Some call her handicapped...
I call her Perfect!!

-Source/Author Unknown -

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Medical Terms..

A friend of mine was told yesterday that her child may need either a “BiPAP” or a “Tracheotomy”. She called me up to discuss this. We talked about it very intelligently using all the medical terminology that have become such a big part of our lives. Others listening to us would have thought that we were nurses or doctors. Words such as “BiPAP” or “Tracheotomy” are not everyday terms loosely used among parents, neither are: Regulators, feeding pumps, NG tubes, Oxygen tanks … etc.

As a special mom, we are thrown into a field that we probably never had a desire to be in. We find ourselves medically educated whether we wanted to or not. The experience and knowledge we gain as we care for our kids cannot be taught in any school. It results from working the daily, nightly and overtime shifts with our kids. It stems from constant consultations with doctors and medical suppliers. It is a 24 hour constant learning exerience.

If you ask me why we do this, I can honestly tell you that we do it because of our strong love and bond for those kids that God has entrusted us with. We know that we were chosen for a reason and, thus, try to do the best job that we can. We educate ourselves in all aspects in order to help our kids.

Knowledge is power and mine has become exponential!!.

©Copyright 2007.Najwa S. Hirn. All rights reserved.

My Daughter's Gift..

When I was a little girl my dad wanted me to become a writer. I hated writing, but in order to please him I took many writing courses by correspondence. I must admit that all these courses helped shape my writing in college. I excelled in my papers but still never thought that one day I’d do it voluntarily.

Lo and behold, one day my daughter Alex was born and everything changed in terms of my writing. Her entire existence brings out all kinds of emotions in me. It all started out at the NICU when I would sit by her incubator and write in a journal for her. The words were my anchor. They brought me hope and strength as I waited patiently for the light at the end of the tunnel. Eight months in the NICU is a long wait for any mom. The words kept me busy. Soon, several of the NICU nurses were contributing to her journal. This small book proved to become the meeting place for anyone who wanted to pour their emotions for Alex. She touched so many hearts. It was hard not to get involved with this tiny little girl that was proving to everyone that she was truly: “Mighty, Might”.

Years later I am back writing again, this time in this blog. I find it very therapeutic to be able to pour out my feelings. I have developed a strong bond to each and every article that I have created. I finally understand the joy of writing. The freedom I experience, as I mold each word and sentence in any way I feel, is exhilarating. It is as if Alex is now shaping my life to become the writer that my dad always wanted me to be.

It’s truly strange how the world turns..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Celebrating Mom..

image courteousy of: http://www.flickr.com/photos/anoved/377087113/


My daughter, Alexandra, must have known that it is her grandmother’s birthday today. As soon as my mom woke up, Alex ran to her, gave her a big hug and planted a deep wet kiss on her face.

We’re staying with my parents this weekend to celebrate my mom’s 75 birthday. It’s difficult for me to fathom that my mom is actually turning 75. It seems that only yesterday she was in her 40’s. I don’t know what happened to the time. It sure did fly.

As I watched my Alex celebrating with her grandmother, I couldn’t help by remember the first moment that my mom laid her eyes on Alex. She was so shocked and the sight in front of her left her speechless. Alex was so small with wires covering her entire body that it was difficult for my mom to make heads or tails out of this little girl laying in the Isolate. At that time, my mom just put on a strong courageous face as she looked at me and said: ”she’s beautiful”. My mom knew that I needed to hear that.

I’m fortunate to have the time to spend with my mom and my child. Alex has turned out to be beautiful just like her grandmother had predicted so many moons ago. She adores her grandparents and brings a lot of joy into their lives. Just like that moment in the NICU many years ago, my parents continue to be optimistic and trust in her bright future.
I have learned a long time ago to trust and believe my parents. I see the results every day.

Happy birthday mom!!

©Copyright 2007.Najwa S. Hirn. All rights reserved.

God Knew..

I finally realized earlier this morning why God gave me my daughter Alex. God knew very well that I would take care of her. He knew that I would never, ever give her up. He knew that I would be fair to her and treat her with the respect and dignity that she deserves. He knew that I would cherish this gift of his and follow his plan for her and me.

It was a challenging morning, as many of them are with a special child. Things that others take for granted, take so much longer for us to accomplish. Alex’s behavior is like a roller coaster. I never know when we’ll be high and how fast we’ll plummet down. It is not an easy ride but we’ve made it thus far.

When the roller coaster finally took a break earlier today, she sat in mommy’s lap and gave me the best kiss on the cheek. I felt tears coming to my eyes as I wondered what I’d ever do without her. In spite of all the difficulties, I knew that I couldn’t bear life without her. She is the light of my day and I love her dearly.

It is on those mornings that I turn to God and realize that I am not alone in this. He is with me and he will always take care of things.

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Snow Bunny..

The temperatures here in Florida actually dipped into the upper 40’s this morning. This may not seem much for others, but for us Floridians, our blood is thin, at least mine is and a dip below 60 can throw me all off. Every year I promise myself that I would be more prepared for the cold but the change always seems to come so suddenly that it never fails to catch me off guard.

I must admit, nice cool weather combined with very low humidity results in such great sleeping conditions. It actually heart wrenching to have to leave the comfort of one’s bed to get up for school or work. Needless to say, beggars can’t be choosers and we have to get up.

http://www.professorsearch.com/search/snow

This weather change has finally suited my Alex. She had a wonderful night’s sleep last night, which doesn’t come often. This resulted in a much happier child in the morning. A child ready to go out and conquer the world. We are always amused when we see her skipping around the house as she runs in excitement for one thing or another.

I never could understand why school for special kids or any small child should start that early in the morning especially on cold mornings. But who am I to ask questions or complain, I just have to follow the rules. Therefore, in order to get Alex ready, I chose to bundle her up this morning. After all, we were having a snow drift (maybe!!) here in Florida this morning. The chill at 7:20 in the morning can be daunting for a little kid (and a big mommy, too).

It is during those mornings that I make good use of the heavy clothes that usually just sit in the closet for days on end. After all, our cold days are so numbered here in Florida. With this goal in mind, I had Alex dressed in her finest heavy gray and pink pants with a beautiful hooded fleece “strawberry short cake” pink sweater on. She actually humored me and kept the hood on while we walked across the school parking lot to get to her teacher. I do truly believe that she enjoyed the outfit and making me happy. What a beautiful site. I wish I had the thought to take her picture. I’ll have to make sure I do that the next time she is so well bundled.

My job today was done. I succeeded in keeping my “Snow Bunny” warm and happy. It just doesn’t get any better than that..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Learning Time..

As a mom of a special child I have become aware of the importance of finding the right resources that can help my child. Not all learning tools or therapies are created equal, so I am in a constant search for material, therapies or supplements that can bring out Alex’s full potential. The research role associated with being a special mom can be demanding and overwhelming but nevertheless rewarding. It is a constant knocking on the door to receive the right response.

One of my goals with this blog is to find and share ideas, information or new material that I find on the Internet. Therefore, I was very excited to come across a site called:
Do2learn. In addition to information and links, the site provides a section to teach kids sequencing games or coloring. Free parent and teacher material is available and may be reproduced. The home page tells it all so here it is!

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Peace Within..

May today there be peace within.
May you trust God that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith.
May you use those gifts that you have received,
and pass on the love that has been given to you.
May you be content knowing you are a child of God.
Let this presence settle into your bones,
and allow your soul the freedom to sing, dance, praise and love.
It is there for each and every one of us.

-Wardah William-

http://www.triumphpc.com/netcard/images
Whenever I am lost for words, or feel that I cannot share my true feelings in a post, a wonderful message awaits me in my inbox. It is as if the heavens above know what I need for this particular day and just send it to me. This continues to happen on the occasions that I need it the most.

It is without doubt that God has been looking out for Alexandra and me since the day she was born. I find myself saying time after time that: “things happen for a reason” and there is a definite reason for my child’s birth. Some days I wonder what that reason is, other days, I know deep down that it is a legacy of love. A precious gift that I was entrusted with to mold and shape as God intended me to.

I will probably never know the reason why, but who am I to question his judgment. I must just be humbled that I was the one chosen to carry on his plan. A plan that includes a little girl, a loving mom and a whole lot of faith..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Blessings..

God does not throw us away just because we are not perfect

or because we have problems or challenges.

He watches over us and even brings others into our lives

to help us when we are in need.

I am blessed in so many ways. Yes, my life has not been easy since Alex was born. There have been challenges and struggles along the way. Some days I experience such tiredness like I have never thought could exist. As you all know, raising a child with special needs is a complex matter.

However, in spite of all the hardships I am still blessed. I’m blessed to have a loving family in my husband, parents and sister. A family who I can count on whenever I need them. I’m blessed to have a life full of wonderful friends who care deeply for me. I’m blessed to be healthy and strong so that I can continue to take care of my Alex. But most of all, I’m blessed to have strong faith. It is this faith that keeps me going and lets me know that God will always send someone my way whenever I need help..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Park..

Even though we are in the first week of November, the weather has finally gotten pleasant enough here in Florida to allow us to enjoy some outdoor activities. It was actually beautiful today as the temps finally dipped to the mid to upper 70's with a soft breeze and sunshine. With this type of atmosphere just beckoning us to go out I just had to take Alex to the park so that she can enjoy the new world that has been bestowed upon us.

We were fortunate that my mom came with us since Alex and I are visiting the grandparents again this weekend. It is very important for me to involve Alex's grandparents and family in her activities. It is those moments that create memories that are hard to forget or erase. Family moments that are filled with love and laughter. Moments we can look back upon and remember with fondness.

Alex enjoyed the park experience to no end. She attempted going up the steps and sliding herself down the baby slide as grandma waited at the bottom. Initially I was helping her go up the steps to get to the top. Slowly, I realized that my child is now capable of doing this on her own. I learned a valuable lesson today. A lesson that taught me that at some points in our kids lives, we need to start letting go. This is a hard concept for me to comprehend since, due to her rough entrance into the world and her first few years of life, I have always sheltered and protected her.

The experience was irreplaceable and we will probably repeate it tomorrow. The days of good cool weather is numbered here in Florida and we need to take as much advantage of these beautiful temperatures as possible for outdoor play.

Tomorrow, I will let my Alex go up the slide alone. I will watch the wind blowing beautiful strands of hair across her face while she smiles and claps as she completes her task. I will praise God for all his blessings...

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Age of Technology..

Our family was trying to make a decision on a very important topic today. We were frantically trying to determine what Alex’s user name should be once I set her up with an email address. Who would have thought a few years ago that Alex would have an email address. Definitely not the doctors who were working around the clock to save her life back at the NICU. At that time, the last thing on my husband’s and my mind is an email address. We were focused on her daily progress. Tracking her vitals minute by minute as we called the nurses at the NICU several times per day on the days that we couldn’t be there.

It took her several years to start enjoying the computer that is in her room with the touch screen that allows her to activate her games and interact with it. It is wonderful to see her little face in deep concentration as she manipulates each game and level on that screen. Her little finger stays busy going around the screen changing scenery, colors and shapes. Again, I wouldn’t have dreamt that would be possible.

Back to the email thing, we are definitely going to start a yahoo mail or hotmail account for her this weekend. She may not be verbal or know how to write but she is sure giving us feedback about her likes and dislikes of the usernames we are picking for her account. Her head shakes a strong “No” to certain names while agreeing on some others.

How times have changed with this new age of technology. Who would have thought that kids as young as five are using computers and emails. Oh Well, Alex is just another kid and she deserves her own email address so that is the plan for the weekend..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Bless My Child..

It is time for another book. This one is entitled “Bless My Special Child: Prayers and Insights for Parents”. The authors are: Andre Gozier and Carolyn Lynch-Quinonez.
The review I read about the book mentioned that it is an inspirational book written for parents who are struggling with the challenges of raising a special needs child. It is understandable that such parents go through stages of emotional turmoil as they face their day-to-day situations. Many become so overwhelmed and frustrated about their lives.

This book was written by a parent of a special child and is intended to help uplift other parents’ spirits as they deal with their circumstances. The book describes the different stages of dealing with our emotions and enlightens us to the joys of being a parent of a special child and how special that child truly is.

A copy of the book can be purchased through the Amazon.com search box provided on this page.
©Copyright 2007.Najwa S. Hirn. All rights reserved.

I asked God..

I asked God to make my handicapped child whole.

God said, No. His spirit is whole, his body is only temporary.

http://llerrah.com/godsaidno.htm 
 

It is amazing how appropriate the above verse is. As a mom of a special child, I tend to forget sometimes that Alex’s spirit is whole. She is his creation and he has made her whole, even if her body doesn’t show it. What does it matter that she is termed CP, DD, Seizures or Autistic. These are nothing more than labels created by man. Her body may face challenges but her spirit is free.

I have often been told that my little girl is a “very happy child”. I’ve also often wondered how she can continue to be so happy with all the medical issues that she has had to face and will continue to have in the future. It is verses like the one above that makes me believe that Alexandra’s happiness shines from within. It is God’s grace showing through her little face and bright eyes. It is his blessings bestowed upon her that makes her smile and laugh at the world as she keeps going on.

As a human being, I tend to get overwhelmed, frustrated and angry at my child’s situation. I must, however, stop and think and learn my lessons from her. Lessons that I can fall back on when times are tough.

It is God’s promising words that I must keep in mind whenever I ask: “why my child Lord?”

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Power Of Words..

Words are one of the most powerful tools that we can use. The power of the written word is phenomenal. It can touch many hearts and bring tears to the eyes of the most strong. The gift of words is so simple to give, yet holds intense love. It can describe true feelings that may prove hard to surface otherwise. What a wonderful legacy to leave for our special child.

With this in mind, please find below a very special poem that I found on Internet. It seemed as if its words were speaking to me as I read line by line. It is one of those poems that you cannot but share with others. Here it is:

My Special Child

By: Cindy Bartko

As I look at your face, my special child,

I see a gift from God, so meek and so mild.

Your accomplishments may seem few and far between,

But happier parents you have never seen.

With every move you make, my heart swells with pride.

My smile beams brightly from side to side.

You'll never know what it feels like to not be loved.

You are truly a gift sent from Heaven above.

As I look at you now I fully understand

That I won't be alone, God is holding my hand.

Life has a funny way of turning things around.

If we let Him take over, His love will abound.

I never knew true faith until you were born.

A special crown I have been given to adorn.

Only a few chosen parents will be able to say

"A special child has been sent to show me the way."

I'm so proud of you wherever we go.

I'll never be afraid to let my love show.

I thank God for you every day

that goes by,I'll never ask, "Why me, God, why?"

www.DSyndrome.com

©Copyright 2007.Najwa S. Hirn. All rights reserved.

My Hopes..

"Far away there in the sunshine are my highest aspirations

I may not reach them,

but I can look up and see their beauty,

believe in them, a

nd try to follow them."

-unknown

Not a day goes by without my hoping and praying for the best of things to happen to my daughter. Usually, that’s what every parent would do for his or her child. However, when you become a special mom, you tend to hope and pray just a little harder. Not just for your child’s well being but for yours also. Seeing your child going through difficult times whether it being medical, physical, emotional or behavioral is very tough. After all, our role as mothers is to ease up the suffering and make everything right. We feel immense guilt and frustrations when we are unable to do that. We are thrown to the sidelines and left to watch as our child progresses through life making the most of things. It’s a tough role. We sacrifice many aspects of our lives since we have been stripped of our control over the simple fact of just being a normal parent.

As a special mom, I have also suffered the guilt, anger and fear but I’ve also kept clinging on to all the hopes, faith and prayers. I believe that is what has been pulling me through all these years. It is without doubt that those were my anchors during the first eight months of Alex’s life that was spent at the NICU. I had to hang on to the hopes, and dreams as dim as they may have seemed at the time. My faith and prayers gave me the hope to go on and assured me that there would be light at the end of that long dark tunnel.

As each day goes by now, I still continue to hold on to higher hopes for my Alex and my self. I have to: otherwise, I will wither away. I know these positive thoughts are funneling unto her and thus making her stronger and better every day..

©Copyright 2007.Najwa S. Hirn. All rights reserved

Rating Toys for Special Needs..

In spite of my years of Internet surfing, I had not, until today, found a site that rates toys for special needs kids based on the disability. Therefore, I was very thrilled today when I came upon this site by pure chance. The search started by my trying to find material for today’s post. A YouTube special needs video led me to a website called: http://www.ableplay.org/. My curiosity took the most of me as I surfed the site and realized that, once certain toy criteria are entered, the site will provide a table for rating each item for a special needs category. I also include the YouTube link to the video that started this search: http://youtube.com/watch?v=pwWeW7PTB_w

Enjoy the information..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Priorities..

I've learned....That the Lord didn't do it all in one day what makes me think I can?

I am my own worst enemy because I tend to overextend myself and fall into the trap of trying to complete seventeen tasks all in one day. At least I can say that I am good at multitasking. My type “A” personality may have contributed to why I was chosen to be a special mom since multitasking is the main job description for that role. Trust me, some days, I don’t know how I can fit it all in. For that reason, I truly appreciated the above words that were emailed to me by my cousin. The trick is to keep reminding myself that I can’t do everything in one day and some things will just have to wait until tomorrow.

As a special mom I am learning to prioritize the tasks. My daughter’s care and needs takes precedence, the rest just fall behind one at a time. The motto I need to go by will have to be: if it can wait until tomorrow, then leave it alone. I guess the clean house that I’ve been dreaming about will take a long time to become a reality..

©Copyright 2007.Najwa S. Hirn. All rights reserved

Staying Healthy..

The start of the school year is a blessing for special moms since it gives us a little break during the day. However, the start of a school year can also mean the start of more colds and infections such as: upper respiratory, staph, ear and gastrointestinal.

Our special kids are more at risk at developing more frequent infections because they usually have a weaker immune system than their peers. I know from experience since my daughter, Alexandra, will catch illnesses very easily. The years of antibiotics, steroids, decongestants, seizure meds and other meds that I can’t even pronounce that she has had in the hospitals has all contributed to her weaker immunity. With that in mind, I take extra precautions when she goes back to school to ensure that she remains healthy and happy.

Here are some tips to keep in mind that can help children and adults remain infection-free:

1. Wash your hands and your child’s hands well with soap and water as often as possible, especially after using the bathroom or coming in from outside.
2. Wash toys frequently especially if your child or others are prone to mouthing these objects.
3. Don’t allow your child to share towels, clothing or linen.
4. Wipe all surfaces clean.
5. Avoid interacting or be in close contact with a person who is infected to avoid catching that infection.
6. Make sure that your child has good nutrition as well as vitamins and minerals.
7. Keep your child clean with daily baths or showers.
8. Make sure that the child’s equipment, such as wheelchair surfaces or other devices are kept clean.
9. Dispose of dirty wash-clothes or tissues after wiping your child’s nose or mouth.

Four pediatricians who specialize in different aspects of children’s health wrote a book entitled: “Naturally Healthy Kids”. An image of this book can be viewed below. The pediatrician field of expertise span from special-needs issue, behavior management, allergy and asthma to Holistic approaches. They provide advice on traditional medicine as well as a natural approach to various children’s ailments.

The review on the book lists that it is an A to Z handbook of illnesses that can be useful for, not only parents, but also daycare providers, teachers are other caregivers.

If you are interested in receiving a copy of this book, feel free to use the Amazon.com search box that is included on the upper right hand corner of this page.

Naturally Healthy Kids: Integrating Conventional and Holistic Treatments for Common Illnesses of Children (Spiral-bound)by Jerry Rubin (Author), Dean, M.D. Prina (Author), Nancy, M.D. Lataitis (Author), Jordan R., M.D. Klein (Author)

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Drive..

As I discussed Alex’s communication needs over the phone yesterday, the therapist I was talking to me: “You are, first of all, a mom and then if you choose to be a therapist you can do that, but don’t forget that you are a mom. If you want to do therapy with your child then set limits to the time that you take on that role. Don’t let the guilt factor consume you because it will.”
For that I replied: “I’d rather not be a therapist but as you probably know, a special mom is driven. We never stop our quest.”

The above conversation left a big impact on me. I’ve been thinking about it so much that I mentioned it to a friend today who happens to also be a special mom. I guess we do lose our mom role when we have a special child. And, yes, we are still overwhelmed with guilt and hurt about our child’s situation. This may never go away but it can probably get easier if we let it. It shouldn’t really disappear completely because it is part of our life and our family’s life. It is already etched in stone and cannot be totally erased. It would be futile to expect it to.

What we must do is try to set limitations on our intense drive for solutions and perfection. If we truly examine everything, there is no real perfection in our world anyway so why should we seek it. We can continue to search and learn about new methods to help our kids but most of all we should just be mom. Sometimes, that’s just what our child needs more than anything else..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Financial Future..

When you become a mom of a special child, you start entering a new world and learning all there is to learn to help your child. The more tools you have, the better equipped you are to fight for what your child needs. Trust me, there is a lot to learn. It is a life long university that, usually, doesn’t graduate you with a degree. You do become certified and well versed in a variety of fields but you don’t ever get to the end. I am not saying this to discourage you, by no means, I mean this as an encouragement to let you know that the more you learn, the better special mom you become. The road may be bumpy but hang in there and keep on those Internet searches, phone calls, therapy visits and support groups.

With all that said, I must admit that it took me a few years to become familiar with the “Special Needs Trust” that can be set up to ensure that our special child’s financial future is taken care of. This kind of legal entity has to be completed by an attorney in conjunction with a financial planner. The document will list and spell out all the needs for the child so parents don’t have to worry if something happens to them. They may rest assured that all their child’s needs will be met since they had a role in listing their input and desires for their child’s comfort.

My husband and I were able to work with an attorney who completed the documents needed for my daughter’s Special Needs Trust and now she has one set up. We are more relieved that that aspect of being a special parent has been taken care off. All I needed to do is take the completed legal paperwork to the bank and complete the procedure.

During my recent search on the Internet, I was amazed to find many books written on the subject. I have included an image of one with this posting. This book, among others, can be found at Amazon.com. I have added a search box on this page to enable parents to have easy access to this book or others in this field.

Good luck on your search!!

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Full Moon..

I’ve often wondered if our special children’s behaviors can be linked to the effects of the Full moon. Why not? They are little people with emotions, hormones and stress levels just like all the rest of us, so if we can react to the Full moon syndrome, then so can they. I almost proved this theory this past few days when my daughter Alexandra has been exhibiting bad behaviors. Her anger and frustration was trickling onto me leaving me drained with exhaustion. By the time my husband arrived from work this evening, I just needed to get away.

While driving to the evening class that I take once a week, I noticed the glory of that moon up in the sky. It is so close to being full and so bright that it lit the evening sky. It was actually beautiful to watch. It dawned on me that its effects may have contributed to the commotion that we have been experiencing. I don’t care if the moon theory is true or false. All I know is that we sure have had a tough couple of day. Lets hope for better days to come..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Promise..

Each and everyone one of us are going through tough times right now, but God is getting ready to bless you in a way that only He can.
Keep the faith.

The above saying was forwarded to me by email. It has been in my inbox for a few days. Something told me to open that email today. Reading it gave me a lot of comfort, especially since our day today was rather rough. Alex had to go for her annual EEG exam, which had to be done under light sedation. She tolerated the drowsy part well but the side effects of cramping and stomach discomfort that followed was too much for her. Pain sends her into aggressive behavior and I am usually the target of her aggression. I felt so helpless since I failed the first mom job description of: making it all better!!

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Visit..

Special moms everywhere know that outings with our kids can be a challenge. We don’t know what to expect. Things can go either way and usually it is beyond our control to fix the situation. With that in mind, I prayed hard this weekend that Alex’s visit with her paternal grandmother and aunts will go ok. I must admit that, compared to previous years, the past few gatherings had not been bad so I was very hopeful.

It’s a shame that, since Alex’s birth, we have not had a lot of chances to visit grammie because she lives a little bit far. All you special moms probably understand what I mean when I say that a long car ride may wreck havoc on a special kid’s mood thus leaving them upset before the visit even starts.

This was a special week. It was grammie’s birthday week and aunties were visiting. We really wanted to enjoy seeing everyone. I crossed my fingers as we started the car ride!

My daughter must have sensed my desire for perfection for this afternoon. She enjoyed her favorite music playing from the car’s CD player and was very excited to see her grandmother and aunts. She made me proud during that visit as she made the rounds kissing all the adults as well as acting the cutest and best that she can be. She must have realized that grammie wasn’t feeling well for she never tried to climb on her lap or tire her in any way. She spent time watching her Disney shows humming and smiling with the songs on the TV. She had so much fun that she didn’t want to leave to go home later in the evening.

My heart swelled with love and admiration as we completed this visit. We were actually acting just like any other family visiting the grandparents. Alex was so good that we forgot all about special-needs and all its complications. The only special part about the whole thing was the special bond shared among all of us as we enjoyed Alex’s display of affection for her grammie and aunts..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

My Wish For You..

I enjoyed reading this poem that I am about to share. All moms will probably relate to it as we all wish the best for our kids whether they have special needs or not. Enjoy the poem.

These Are My Wishes For You
Sandra Sturtz Hauss

May you find serenity and tranquility in a world you may not always understand.

May the pain you have known and the conflict you have experienced give you the strength to walk through life facing each new situation with courage and optimism.

Always know that there are those whose love and understanding will always be there, even when you feel most alone.

May a kind word, a reassuring touch, and a warm smile be yours every day of your life,

and may you give these gifts as well as receive them.

May the teachings of those you admire become part of you, so that you may call upon them. Remember, those whose lives you have touched and who have touched yours are always a part of you, even if the encounters were less than you would have wished.

It is the content of the encounter that is more important than its form.

May you not become too concerned with material matters, but instead place immeasurable value on the goodness in your heart.

Find time in each day to see beauty and love in the world around you.

Realize that what you feel you lack in one regard you may be more than compensated for in another.

What you feel you lack in the present may become one of your strengths in the future.

May you see your future as one filled with promise and possibility.

Learn to view everything as a worthwhile experience.

May you find enough inner strength to determine your own worth by yourself, and not be dependent on another's judgment of your accomplishments.

May you always feel loved.

©Copyright 2007.Najwa S. Hirn. All rights reserved.

The Legal Stuff..

What’s a special mom: A special mom is one who displays strong knowledge and experience in the in medical, educational and even legal areas regarding her special child.
It takes years to get well versed in all the aspects needed to help our kids but we keep learning a new thing every day. We tend to keep an agenda, notebook or file of all the important links, addresses, phone numbers and other information that we may need to pull out one day.

To help you in your mission of adding another link to your database, I am forwarding this link to non-profit special needs attorneys. I just found the article on the Internet and have already added it to my collection. You never know when we may need it!!

http://www.specialneedsalliance.com/about-sna.aspx

©Copyright 2007.Najwa S. Hirn. All rights reserved

Flying Saucers..

I still don’t understand my daughter’s behaviors or what triggers certain issues with her. After nine years, I thought that I could read her like a book. That works sometimes, but no such luck today!

Alex usually likes to go in the car, however, that did not happen this afternoon when I told her that we were leaving to meet our once-a-week library friends. She was so upset with that fact that our house turned into a sci-fi scene with flying saucers in the form of CD’s, DVD’s and other objects flying everywhere. The chairs weren’t spared either but they ended up down on the floor rather than up in the sky! What a relief for that! I can’t imagine what I’d do if chairs were flying around in my living room.

I should’ve realized that this outing was not destined to go well when I received a bad note from school today. It seems that the classroom was rather noisy and that bothered Alex to no end. She was a tad more sensitive and the noise was just a bit too much to handle. Once the scales are tipped, Alex’s day doesn’t go very well.

With all that in mind, I never should have suggested the outing. What was I thinking!! I don’t know anything; after all, I’m just the mom!!

All I can say is that tomorrow is just another day and it just has to be better than today!!

©Copyright 2007.Najwa S. Hirn. All rights reserved.

In My Daughter's Eyes..

In my daughter's eyes, I am a hero.

I am strong an' wise,

And I know no fear.

But the truth is plain to see:

She was sent to rescue me,

I see who I wanna be, in my daughter's eyes.

In my daughter's eyes, everyone is equal,

Darkness turns to light,

And the world is at peace.

This miracle God gave to me,

Gives me strength when I am weak.

I find reason to believe, in my daughter's eyes.

An' when she wraps her hand around my finger,

Oh, it puts a smile in my heart.

Everything becomes a little clearer.

I realize what life is all about.

It's hangin' on when your heart has had enough;

It's givin' more when you feel like givin' up.

I've seen the light: it's in my daughter's eyes.

In my daughter's eyes, I can see the future.

A reflection of who I am,

An' what will be.

An' though she'll grow an', some day, leave:

Maybe raise a family,

When I'm gone, I hope you'll see,

How happy she made me,

For I'll be there, in my daughter's eyes.

I came across the above Martina Mcbride song by chance. The words were so beautiful that I couldn’t help but remind me of my child. If you’d like to see the video go to:

http://www.youtube.com/watch?v=eLS0Y40WwlA

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Revelation..

I was evaluating my day this evening to determine why it was a hard one. The past few days of not sleeping, combined with running around all day long, and the fact that my angel was acting up today and throwing a tantrum didn’t go well. The spice of that mixture was just too strong for me to handle.

Special moms everywhere will tell you that when you have a special child, sleep ceases to exist. Most special children have difficulty sleeping through the night and therefore function on very little all their lives. I’ve tried to get adjusted to that way of life with no luck. I’ve always been a sleeper. Going on very little sleep for a few days just doesn’t do well with me.

It is during those times when I’m most vulnerable and thus little things bother me. The fact that my child was being a stubborn kid this afternoon really overwhelmed me. My Alex had decided to lay on the concrete in the hot Florida sun at lunchtime refusing to get in the car. We were finishing up a visit at a friend’s house when this incident took place. There was no reasoning with her. When I attributed this to her special needs, my friend said: “but that is just what other kids do! They act up sometimes and test the limits!”

What a shock!! I realized after hearing this phrase that during these past nine and a half years, I was not given the chance to be just Alex’s mom. I’ve been her: medical care giver/ nurse, medical supplier’s nightmare, advocate and fighter against all insurance denials, and a slew of other titles. I’ve been so engrossed in all the special-needs stuff that I had forgotten my utmost role of being a mom. I didn’t even recognizing that kids just act up and throw tantrums sometimes.! What a revelation..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Celebrating Special Needs..

ANYTHING YOUR KID CAN DO, MINE CAN DO DIFFERENTLY

If you like a little humor as well as support and inspiration, check out the book I just found on the Internet. Yes! I’m surfing the Net again! Special moms everywhere can relate to that. It is our home away from home; a pastime and a safe haven that will allow us to have some control over our lives with our kids. By surfing every possible cure out there, we feel that we can fix what is broken. In most cases we convince ourselves that we can!

Back to the book, everything about it spells humor and joy. The title is: Shut Up about… your perfect Kid. The quote at the beginning of this post comes from the title to chapter 4.

The book celebrates special-needs parenting by providing humor as well as support and inspiration for parents raising special-needs kids. The authors are two sisters who are moms of special needs children and have been through it all. The stories in the book bring out the positive side of parenting a special child. I can’t wait to get my copy.

If you are interested in getting your copy, click on the link I provided on the right side of this posting and you can order it through Amazon.

Happy reading and lots of laughs!!

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Giving My Kid The World..

The look on Alex’s face this evening when I made her “Elmo” talk was priceless. It was a mix of awe and excitement all blended together and shone brightly in my child’s eye as she turned her head to witness this monumental event. She ran to grab the toy and continued to press his tummy to bring him back to life just as mommy has. Batteries are a wonderful invention, aren’t they!!

What a drastic change that is. You see, Alex used to fear toys that talked. Anything with a sound brought intense terror into her little face; she would cover her ears and run away from the offending object. I recall the first time we brought this same “Elmo” home several years ago. Her distress was so intense that I went on a mission that day to take the batteries out of each talking toy that she had in her toy box.

She has come a long way since that day. Intense therapies, nutrition, vitamins, growth and whatever else that has come our way have definitely been helping to tone down her auditory sensitivities. Days of exposing her to offending outdoor noises paid off as she begins to tolerate some of those same toys that bothered her so much before. She still struggles with children’s screams but overall the change in her is phenomenal.

Back to the “Elmo” story, she was so excited with his newly acquired verbal skill that she took him to bed with her. She fell asleep pushing his tummy and activating his voice. Seeing her so happy made me feel as if I had given my kid the world..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

I love you mom..

It is without doubt that my daughter, Alexandra, is a social butterfly as long as the community she is associating with consists of adults. She enjoys visitors to the house as well as interacting with adults during the various outings that we do.

I had mentioned in a previous posting that, aside from one little girlfriend at the library, Alex does not tolerate children very well. Their noise and fast activities bother her. It all stems from her Sensory Integration problems that developed as a result of her prematurity, as well as all that she has had to go through during the first crucial years of her life. Her sensitivities are getting better but we work on them daily with various therapies and exposures to different stimuli.

Her enjoyment for visitors was apparent this afternoon when we entertained two young ladies visiting from a University Communication center. The goal of their visit was to evaluate Alex’s communication skills in order to come up with ideas and possibly generate recommendations for methods that may help her progress in that area.
Alex had suffered a grade I brain bleed in the language area of her brain while she was in the NICU. This has left a huge deficit in her expressive skills.

One of the most frustrating issues for a special mom and child is the lack of verbal communication. Even thought I know what Alex needs and wants most of the time, it is still a difficult issue to handle. She gets very frustrated, especially when in pain since she can’t tell me where it hurts. In the community, her difficulties hinder her as she cannot convey to others what she is thinking or wanting. She can’t understand why her gestures out in the real world don’t work as well as they do on her mommy.

I cannot even begin to imagine not being able to verbalize what I need. My heart goes out to my child as I try to help her with all that I know how. I pray that the visit today will bring about a variety of options that may be available for her. She is a smart child and can understand everything. I hope that one day, with God’s help, and all the therapies and new technologies out there, I can hear her say: “I love you mom”.

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Happiness..

I was driving my mom home this morning when she brought to my attention a very powerful comment. She said, “Alex is a very happy child. You can see that very clearly”.
That one comment sent me in a whirlwind of thoughts. What is happiness anyway? In our daily lives, happiness has become so commercial and materialistic. It is unfortunate that “things” make us happy. Children nowadays can’t be satisfied no matter how many toys or gadgets the parents bought. They are constantly bored and always needing more.

That is not the case with a special child. My daughter’s happiness stems from the fact that she is so loved and she knows it. A strong caring family surrounds her. We will do anything for her. The simple act of just cuddling her and watching TV or listening to music, is all that is needed to make her smile. To her, happiness is not the need for a new toy or clothes; it is a state of true love and togetherness. Her joy is seen daily in her smile and actions. It is that pure innocence that she exhibits that assures me that I have succeeded as her mom..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Good Morning Sunshine..

I don’t usually like forwarded emails but I just couldn’t resist this one that I received today from a cousin of mine. Each word of this poem clearly spelled my daughter “ALEX” for me. The flow of the sentences brings out my true feelings for my child as I pray for her well being everyday. I truly believe that God has brought her to this point and will continue to hold her in the palm of his hand. He has definitely heard all my prayers for her so far. A level I (serious trauma) NICU room has a strange way to strengthening one’s faith. Alex remained in that level I for 8 months. While she was there, I couldn’t help but evaluate my life and where I was heading. I became as solid as a rock strengthened by my love for Alex and my need for God. Those were all I had. Control and choices were taken out of my hands and I had to learn to adjust. This prayer reminded me of those days and how far we’ve come. As a mom, I’ll always worry and fret over my girl, but I’ll also always know that God will be by my and her side..

This morning when I wakened And saw the sun above,

I softly said, ' Good morning , Lord , Bless everyone I love'

Right away I thought of you And said a loving prayer ,

That He would bless you specially , And keep you free from care.

I thought of all the happiness A day could hold in store,

I wished it all for you because No one deserves it more .

I felt so warm and good inside, My heart was all aglow .

I know God heard my prayers for you , He hears them all, you know.

©Copyright 2007.Najwa S. Hirn. All rights reserved.

A Lighter Note..

We all need some humor in our lives. I am sure all you special moms out there can relate to this list. I know that I did. I also got a good laugh out of it too since I realize that I am not alone in this venture. It is amazing how our special world is so different than other parents. It is unique but it is ours and our children’s. This world joins us in an inseparable strong bond called special-needs. Enjoy this list that I found on the Internet and cherish your special child.

You know you have a child with special needs when...
by Carol AnCel

You compare ER's instead of grocery stores.
You compare your child's oxygen saturations.
You view toys as "therapy".
You don't take a new day for granted.
You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
The clothes your infant wore last fall still fit her this fall.
Everything is an educational opportunity instead of just having plain old fun.
You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).
You also don't mind if your child goes through the house tooting a tin whistle.
You fired at least 3 pediatricians and can teach your family doctor a thing or two.
You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!
You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!
You get irritated when friends with healthy kids complain about ONE sleepless night when their child is ill!
Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.
You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else will be there!
Fighting and wrestling with siblings is considered PT.
Speech therapy occurs in the tub with a sibling.
When potty training is complete, you take out a full page public notice in the Washington Post.
When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.
You keep a daily growth chart.
You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
You phone all your friends when your child sits up for the first time, at age two.
With a big smile on your face you tell a stranger that your four year old just started walking last week.
Her medical file is several inches thick and growing.
You have a new belief.....that angels live with us on earth.

Abilities..

It is sometimes difficult to realize that there are people out there who have situations that are so much worse than ours. The challenges we face with our kids blind our sight, thus keep us wallowing in self-pity. I’m as much to blame as anyone else of the “why me” or “why Alex” syndrome. As you have probably gathered, it has been a long day today filled with trials and tribulations. Alex was up and down with her behavior. I just couldn’t pinpoint what was wrong.

It is on days like today that I turn to the Internet in search of anything that may help. The young man featured in the video I am about to share is phenomenal. I will always remember how he described disabilities by saying: “It is not disabilities but abilities, God created me different but big deal!” How true!

We are each created different and possess unique abilities that make us who we are. We need to embrace those abilities and encourage rather than discourage them. The story of this young man in the video made me stop and think about my day. I realize that, in spite of her limitations, my Alex has wonderful abilities that I am thankful for. Abilities that allow her to walk, see, listen, laugh and love. What more can I ask for. Enjoy the video and be blessed today..

http://youtube.com/watch?v=-qTiYA1WiY8

©Copyright 2007.Najwa S. Hirn. All rights reserved.

My Gift To You..

I’ve finally found out where I’m heading with this blog. I eventually would like to print out all the articles and bind them together as a gift for my daughter. I’m not really sure why I want to do that but I know one thing she deserves it. She has gone through so much in her young life. I feel that this will be a legacy that I will leave for her. Even though I’m with her daily, I still feel that this is the only way that I know how that helps me pour out my true emotions.

In the past I had felt guilt and frustrations at what she has had to endure. The ups and downs I witnessed her undergo while she was in the NICU was very heart breaking and stressful. I wouldn’t want to wish that to happen to any mom who had desperately wanted a child, nor on an innocent baby who had no control over what was happening to them.

Initially, I had wanted to write a book for and about Alex. I seem to have given up the idea. Maybe I truly hadn’t and it is still in the back of my mind. That could very well be why this blog was born. It may be my first step towards that book that I have dreamed about all these years.

Alexandra has taught me so much in her own way. The lessons that I have had to, and continue to learn are shaping the new me. The stronger me is learning to let go and truly trust in God’s plan. My dear Alex, this is my Gift to you..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

Grandparents' Love..

Grandparents and grandchildren,

Together they create a chain of love

Linking the past,With the future.

The chain may lengthen,

But it will never part.
-Author Unkown-

My daughter, Alexandra, and I had a wonderful weekend. We spent it with my parents who live about 40 minutes away. We tend to do that often. As a matter of fact, after Alex came home from NICU back in 1999, we were forced to move in with my parents for a few months in order than they can help me with the baby.

During those early days, it was very tough to take care of a child who, for 24 hours was hooked to an Oxygen tank, feeding pump and an apnea monitor. The equipment and wires were all that you could view since Alex was still very small at that time. You see, at 10 months of age, my baby was still only 4 pounds; she couldn’t sit up or hold her head up to support herself and sole existence depended on those attachments. The Oxygen tank weighed more than her at that time.

It became obvious that I had needed my parents help to take care of my child and they never failed me. They had always been there for the past nine years. I couldn’t have done it without mainly God’s help and then my parents..

Things have changed so much since those early days of Alex’s homecoming. I am very glad that those days are long gone in our past. We now concentrate on our future. My daughter gets so excited as soon as I drive into the town were my parents live. She claps her hands and laughs as we enter the road leading to their house. Alexandra, who once couldn’t sit her self up until she was nearly two, now gets out of the car and skips along their driveway to get to the door and knocks. The child who was once buried by wires and tubes, now pushes their door and makes sure that she is receiving that first hug and kiss from grandma and grandpa. She shines under their care.

It is true what the above poem says about the strong bond between grandparents and grandchildren. It is a special bond that cannot be replaced or created; it is just born out of love and affection. It was unfortunate for me that I missed out on my grandparent’s love. I want to make sure that my daughter doesn’t miss an opportunity with hers..

©Copyright 2007.Najwa S. Hirn. All rights reserved.

A Special Mom..

Certain articles, essays or poems leave such an impact on the reader that it becomes impossible to ignore them. This article by Erma Bombeck has done just that. My eyes tear every time I read it. I feel blessed that my daughter, Alexandra, picked me to be her special mom. I don’t know why it happened but it is not for me to question but to accept. It’s by no means an easy road, but a road filled with harshness and challenges. As moms of special kids, we have become worriers as we overcome the difficulties. We are a unique breed and a league of our own. Enjoy this posting my sisters in the special world:

The Special Mother

by Erma BombeckMost

Women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructsHis angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia." "Rutledge, Carrie; twins. Patron saint, Matthew.
"Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter,I can fix that. This one is perfect - she has just enough selfishness." The angel gasps -
"selfishness? is that a virtue?"God nods.
"If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word' ". She will consider a step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them.
She will never be alone.I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."

©Copyright 2007.Najwa S. Hirn. All rights reserved.

You and Me..

The past few years I have come to really relate to, and appreciate Helen’s Reddy’s song “You and Me against the World”. The song is very powerful. The title alone describes what life is like for a special mom who cares about her child. Everything happens for a reason and I’m beginning to understand the reasons behind my Alex being here.

Two verses of this song hit home and I wanted to share them with you.

You and me against the world,

Sometimes it seems like you and me against the world,

When all the others turn their backs and walk away,

You can count on me to stay
By Helen Reddy

I began to realize along time ago that if I wanted anything done for Alex then I just have to ask for it and stand my grounds. I had never been a very exuberant person before Alex was born. I can’t believe how much I’ve changed and grown since then. Everyday I see how our kids are getting left in the shuffle when their needs are ignored or sidetracked. I make sure that my daughter’s needs are met.

Here is the other verse from that song:

You and me against the world,

Sometimes it seems like you and me against the world

And for all the times we've cried,

I always felt thatGod was on our side.

By Helen Reddy

It is without doubt that the new strength I’ve found comes from God. No matter how tough life can get, things will be OK as long as we trust in his plan. It is ultimately God who will always take care of things.

©Copyright 2007.Najwa S. Hirn. All rights reserved.