Making a Difference..

Since you get more joy out of giving joy to others, you should put a good deal of thought into the happiness that you are able to give.

- Eleanor Roosevelt

No matter what our daily challenges are, we can still strive to make a difference. Simple actions of love, compassion and care can go a long way. We can definitely receive happiness when we give that same to other people. Special kids bring with them special joys and love. I know because my Alex gives me happiness every day. In her simple ways she shows me how much she cares. Maybe it’s a kiss she will plant on my cheek or just a cuddle. Her eyes are the windows to her soul and I know how much love and happiness her soul continues to spread.

Please take a moment and make someone else happy today in anyway you can think of. A friend emailed me this video that I am about to share. Enjoy watching this special boy who has brought so much happiness to so many people. It’s a tear jerker..

The Simple Truth of Service

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

The Birthday Party..

My daughter Alexandra continues to amaze and surprise me daily. I never know from one minute to the next what she’ll be up to or what we’ll be doing. I guess that is what can be called as “spicing up our lives”.

We were invited to her cousin’s first birthday party this afternoon. I wasn’t sure what to expect or if she would even tolerate it. It can be a touch- and-go with these gatherings sometimes. I am blessed to have a very understanding family who don’t ask questions if I have to decline an invitation or walk out of a get-together. They all know that it is Alex’s schedule that rules and not mine. This makes things much easier and less pressured for me.

Anyhow, back to the party, Alex really enjoyed it today. She greeted everyone, was smiling and walking around. She enjoyed hoping from one adult lap to another. We were both very happy that we were able to celebrate her cousin’s birthday. He was smiling and getting around, she was smiling and getting around; life just couldn’t get any better this afternoon. Happy birthday Cuz, we love you..

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

Freebies..

What would you think if I told you that you could get free learning software for your special child. I couldn’t believe it either until I went to this site: Hiyah.net. As a matter of fact, I am currently downloading one the free software as we speak, oops.. I mean write.. The software was developed by a mom to meet the educational needs of her two boys. What a wonderful idea to have it be available for all the other parents also. Even though the software is designed to meet a child up to age 4, it would be ideal for our special children. The simplicity of such programs can highly assist our children catch up. Our special kids struggle with educational requirements at different ages. Sometimes, they need material that is developed for younger age groups that can help them catch up. I hope this can be of assistance to all you special moms looking for appropriate material. Good luck..

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

Down with Barriers..

One of the most precious moments a special mom wants to experience is seeing her child interacting with another child and actually enjoying that playtime. My daughter, Alexandra has always had difficulties accepting and tolerating other children. She has even shown intense fear from kids on many occasions. We haven’t yet been able to determine why that is. We do know that the high pitch sound of children will scare her to no end. Sometimes we attribute her fear of children to her associating kids to the doctors' offices she had spent a good portion of her childhood visiting.

With that said, I had been thrilled the past few months to witness an angelic friendship developing between my Alex and another little girl we met at a nearby library. It is amazing to notice that, to this other girl, my Alex is just another child who is her best friend. She looks forward to our weekly visits and just enjoys reading to my daughter, walking holding her hand or just learning a few sign language words in order to be able to communicate with Alex. When the two girls are together, Alex’s limitations don’t matter, and her challenges just disappear. During those two hours my daughter becomes one of the crowd, just another little girl having fun with her best friend..

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

Just for fun..

As a special mom of a special kid we need a diversion and a break every once in a while. I know we are expected to function non-stop like the energizer bunny but some times we do run out of gas and have to slow down. With that in mind I want to share a URL of a site that I came across called : Moms coffee break. The games and puzzles featured on this page kept me busy and entertained for hours. Since my Alex was having an off day, this diversion helped keep my mind off our daily challenges. I became so engrossed in the game that I lost track of time. I just needed to engage my mind on a different activity today. I hope that you enjoy these fun activities like I did and please allow yourself the break you badly need..

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

A Thank you note..

No matter how difficult things are, we must always stop and think of the good that is still out there. Others who embrace you and pat you on the back make such a difference. Even though others are struggling in their on way, they still take the time to help you out. I have been blessed to come across such special people in my life as I strive to help my daughter go day by day. Other special parents continue to prove to me day by day what a special community this is. A community of loving and supportive group of people that do not hesitate to step in when you need help. On that note I would like to extend special thanks with this post. The first one to the parents of a child in my daughter’s school who were so gracious as to give us a brand new medical stroller that they are not using. We have been in need for such a stroller for a long time since Alex has grown the small-umbrella one that she has. It seemed as if it could be Christmas morning today when I picked up this wonderful new Alex-mobile. I can’t wait to try it.
Another thanks goes to a special mom who left me a comment that I published on the blog. I appreciate all the feedback to the posts. It is those feedbacks that keep me going..

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

Chicken Soup..

If you are a reader like me, then I am sure that you are always on the lookout for new material to devour. I can’t think of a day in my life where I hadn’t enjoyed reading a good book. As the years pass, my taste changed also. Since the birth of my daughter Alex, I have focused on reading books dealing with her condition. My collection includes books about the various therapies out there, or real stories of children overcoming certain ailments or conditions, or methods on how to deal with certain circumstances. As I performed my daily Internet search the other day I came across an article announcing a new book: Chicken Soup for the Soul Celebrates Children with Special Needs by Jack Canfield, Mark Victor Hansen, Heather McNamara & Karen Simmons. It is a collection of heartwarming stories of families dealing with the daily challenges of Special Needs. I found the book on an interesting site called: Special Needs Project. I Hyperlinked the site so you may access it with just one click. As moms of special kids, our obstacles are numerous as we deal with our children’s needs. We need stories of hope and Inspiration to uplift our spirits and give us strength. This book will probably be on my Christmas list this year as I add to my collection..

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

My advice to you..

It took me a long time to realize that I should be taking care of myself as well as my child. I had been working on so much overdrive for years before coming to the realization that things needed to change if I were to be able to stay healthy and keep my sanity. I was so focused on just Alex and her needs that I forgot mine. I finally listened to the many advices that my friends volunteered that went something like this: “You really need to stay healthy to be able to take care of Alex”, or “This child will not survive if you aren’t here to take care of her”, or “You need a break”. It all started making sense in the end. Even though I am still focused on keeping Alex well and healthy, I still take time to do things for me. This diversion keeps me grounded and refuels my strength and energy so that I can keep going.
From one special mom to another, here are my tips for you to help you regroup and stay healthy. I hope that they will be as helpful to you as they have been for me:
1. Eat well-balanced and nutritious meals such as proteins, fruits and vegetables.
2. Drink plenty of fluids during the day.
3. Try to sleep well. Most special kids continue to have a difficult sleep schedule for years so
take the chance whenever you can and catch up on your sleep.
4. Exercise whenever you can. The ideal situation is to do it daily but only if your schedule
permits.
5. Reduce the stress in your life by praying, meditating or socializing with family or friends.
6. Do a fun activity for yourself like listening to music, reading a book or taking a class you
enjoy.
7. Join a support group. It always helps to share ideas and create friendships.
8. Most of all be happy and enjoy your child!
You are not alone in your journey. Just stop; regroup; and listen to other moms who understand. It helps to know that others are walking in your shoes and are doing it as well as you are!!

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

What's in a Name..

In November 1998, about a month before Alexandra came home from the NICU. We received this beautiful poem written by a coworker. The poem spelled out my daughter’s name as follows:


A L E X A N D R A

A ngel sent from heaven are you,
L et love flow from you and touch
E veryone you ever will meet.
X tra special in God’s eyes
A nd made for His purpose.
N ever will He ever fail you.
D aily seek the Will of God and
R est in His tender and
A wesome arms of love

by: B. Mudge , 11/24/1998

It is amazing how the lines of this poem materialize in our daily life. The name came about suddenly since she was born so prematurely and I wasn’t prepared for babys names at the time. I blurted out this one that I had heard another mom mention. However, I feel that this name was chosen for her and was meant to be. Various baby names’ lists describe Alexandra as: a worrier and domineering. How true that is since she has had to fight so hard all these years to reach to this point. God brought her and continues to hold her in his loving palms as he grants her the will and strength to keep fighting. He also graced her with charm that does touch everyone’s hearts. I’ve since gotten used to strangers stopping me everywhere saying comments like: “what a beautiful child this is” or “there is something special about this little girl”. I can’t help but beam with pride as I say, “It’s God’s love shining through her”!

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

Let There be no light..

When Alex was a baby, we couldn’t wait for her to learn new skills. Due to her medical complexities, we were afraid to hope for what she will be able to do. Her many limitations were inevitable. We didn’t expect half of the things that she can accomplish now. One of those new skills that she has picked up recently is her fixation with turning the lights off. I guess she is learning at an early age how to conserve energy!
Initially, I didn’t think she would get tall enough to do that.. I didn’t imagine that she would half run and half skip from switch to switch and mess with those lights. She must have strong night vision since she does this constantly every evening specially when mommy and daddy are eating dinner or washing the dishes. The sweet child thinks we should be having a candle lit dinner. Even though this has become somewhat of an annoying habit, I still can’t complain. I think of times long ago when she couldn’t crawl until she was over two and couldn’t walk till she was nearly five. Every skill, no matter how small or insignificant, is a huge accomplishment. Maybe she thinks we should be having a romantic dinner, I just hope that she is not hoping for a baby sister or brother because that store closed a long time ago!

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

The Gift..

Paintings by Elaina Jamieson

Yesterday was the past.

Tomorrow is the future.

Today is the Gift - that's why it is called the present!

It was Open House at Alex’s school this evening. As I watch my child walking proudly to her classroom holding her daddy’s hand, I can’t help but be filled with pride and joy. The feelings overwhelm me since a few years ago I never would have dreamed this evening would be possible. The beginning was grim. I recall the fears, uncertainties and concerns
during her long eight months NICU hospital stay after she was born. My prayers, dreams and hopes for her at that time were the very short-term goals of just getting through each day. Sometimes, it was just getting through each hour. Once discharged from her hospital, I wondered if I could get her through to make her first birthday and then the second and so on. What a long way you have come my little princess since that day in 1998. I thank the Lord for all his blessings upon you and pray everyday that he continues to give me the strength to take care of his precious gift..

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

Pureed Food..

Most of the special moms dealing with kids with feeding issues are probably well aware of “Thick-it” which is an instant food thickener that concentrates food into a thicker consistency thus making it easier for patients with swallowing problems to manage. I was excited to read in a recent issue of EP (Exceptional Parent) magazine that “Thick-it” has come up with 13 flavorful pureed food cans. The company will even send out samples for patients to try. For additional information on that go to: Thick-It Purees. I just received two 15 oz. Sample cans in the mail today. I am wondering if Alex will like them as much as the lint she chewed on a few days ago. I am debating whether to introduce them just as they are or turn them blue first.. (see 09-12 post)

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

My Rainbow..

Under The rainbow

© by Mary Baxter St.Clair
In order to see the Rainbow, you must first endure some Rain
Thomas Kinkade

What a true and encouraging expression the above quote is. As a mom of a special child we treasure our rainbows no matter how small or insignificant they may be, because we are well aware that we’ve had to endure some serious rain to get these beautiful rainbows.
Our child’s every step is a milestone. What others take for granted we wait and pray for. What seem as a trivial accomplishment for others appears as a huge leapfrog for our child. We are so proud of every little thing that they are able to master because in the process we had both battled the rain and came out shining. Alex and I have had our shares of rains and we will probably always will, but we know that our rainbow is just around the corner, we just need to concentrate harder and capture its beauty and its out there!!

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

The Wild Child..

My poor Alex has been sick. She has only been in school for three weeks and has already contracted a virus. I thought it would take a little longer than that, especially since she is only in school for half the day. In my rationalization, I was hoping that would mean half the chances of being a virus target. Not on my life.. Anyhow, she came down with a cold, slight temp and the usual aches and pains associated with such a bug. It started a few days ago and has already developed into a nasty cough. Even though she’s had these coughs in the past, they still remain a concern for me. I try desperately to avoid them turning into pneumonia. I believe we are beyond the bronchitis stage at this point, but I sure can try to avoid pneumonia.. That’s when our trusty nebulizer comes out of hiding and the Albuterol starts doing its thing. It truly is a wonderful drug in more terms than one. It not only controls and dries the cough and open the bronchial but also turns my child into what I term as the “Wild Child”. Needless to say, daddy and I are having a wonderful time trying to convince our “Wild Child” to go to bed tonight. Hopefully the Albuterol dose will not last till past midnight. Oh well! It’s going to be a long evening..

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

A Thousand Words..

A picture can usually speak a Thousand words. I know this one does (please click on the image to enlarge it). It was emailed to me a few days ago and I just had to share it so you can all get the laughter that it brought to me. It truly describes my days and, I am sure most of yours. A "quiet moment" is not usually on our daily list of to-do's. It doesn't matter if the child is special or not. A kid will always be just a kid...
What more can I say..


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

Communicating..

Alex and I had the most astonishing time communicating interactively this afternoon using a PECS (picture exchange communication system) picture. The reason I say astonishing is the fact that communication has always been a big issue with Alex. Aside from a very limited list of words, she is not verbal. She had suffered a grade I brain bleed in the BROCA region while she was in the NICU. This combined with seizures, illnesses and meds these past 9 years left its mark on her communication ability. It all started to change about a year ago when one of her therapist started working with her on the ABLLS (Assessment of Basic Language and Learnig Skills) program which opened up a whole new world for her in terms of object recognition, expressing needs and wants, some signing as well as some verbalization. In order to practice her skills, Alex was carrying a PECS picture of me this afternoon. She sat near me on the couch, smiled and handed the picture to me. I played dump and prompted her to tell me who was in the picture. She kept smiling, brought her face close to kiss the picture, pointed and then giggled. I still prompted more. After repeating this for a few times, she finally said “Mama”. At that point she gave me such a mischievous look and a smirk on her face that just about said: Don’t you think I know who this is in the picture Mama? The expression just melted my heart as I hugged her. She may not be very verbal but she sure can get her point across..

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

Making Sense..

A dear friend of mine left me a touching comment on one of my blogs. I quote what she said “What a courageous human being you are.” I appreciated this feedback very much but I had to really think about it. I was trying to define ‘courageous’ to see if it fits as my description. After a lengthy period of contemplation, I decided that maybe I am somewhat courageous but most of all I am a special mom trying to make the best of her ‘Holland’… (see 09-11 post)

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

Spare Time..

I had to chuckle today when I heard someone saying, “I do such and such in my spare time”. I can’t even remember what this term means. As you all know when you become a mom, terms such as “spare time” or “privacy” cease to exist. For a mom with a special child, this is magnified by a 100 folds. So the question is: What does a special mom do in her spare time? Well first of all, if there is any spare time left out there, on the occasions when our kids are well, then it will be consumed by phone calls to Insurance companies, medical suppliers, doctors or therapists. Trips back and forth to some medical appointment or other. Daily Internet research that may or may not shed some light on what’s out there that can help our kids. Last but not least, numerous admissions to our local hospital that can qualify us as tour guides for such establishment as we become so familiar with all those corridors. I salute all you moms out there, specially the special ones since I know that you are walking in my shoes every day…

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

A Kodak Moment..

I about fell off when I turned around and saw my Alex’s mouth all blue. I had just looked away for a few minutes when her little hand had grabbed the ball of blue lint that was sitting on top of our clothes dryer. It was rather a surprise for me to see her putting this in her mouth and attempt to eat it like mashed potatoes. Of course, I didn’t have my camera ready to document this astonishing event. You see, my daughter doesn’t, nor shows any interest in eating food by mouth. For the past 8 ½ years she has been receiving all her nutrition by a gastrostomy tube that is permanently inserted in her stomach. She has never before shown any interest in eating anything. The many years of constant Oral-Motor exercises have not produced any changes in her Oral skill or desire for food. I keep trying to feed her daily though in the hopes that one day she will eat either fully or even partially by mouth. Maybe the Lint experience is a start of a good thing!! I may have to try blue mashed potatoes.. Lets wait and see what tomorrow brings..

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

A Different Place..

Many years ago, when Alex was still in NICU, I came across this beautiful poem. I enjoyed it then but it didn’t leave the strong message that I get from it now. As a mom of a special child I’ve had to learn new things, make different adjustments and embrace differences like I had never thought that I would. I am sure most of you know this poem but to those who do, and those who have never read it, here it is:

WELCOME TO HOLLAND by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Probiotics..

What on earth is a term such as “Probiotics” doing in my daily vocabulary anyway! Years ago, I wouldn’t have dreamed that this will be an essential word that I will come to depend on to assist in my daughter’s G-I health. However, as time went by, I learned the importance of these Bacteria for balancing the G-I tract. I’ve been giving Alex “Probiotics” since she was 2 years old. To define this term, I quote from the following Internet article: Probiotics Basics “Probiotics” are: “live microorganisms administered in adequate amounts which confer a beneficial health effect on the host".(probiotic Basics)
When Alex was 2, I consulted with a dietitian who recommended that I use a powder type “Probiotics” made for children 0-5 years. The powder consistency made it very easy to mix the amount I needed in Alex’s daily formula and pump it in the G-tube. However, due to Alex’s sensitivities and low tolerance to new additions to her diet, I was only able to give her half the recommended dose. This went on like clockwork for 6 years. Last year, however, I began to procrastinate with this daily regiment. I was so tied up after her surgery last fall, combined with my completing my final University class and the fact that our local health food store moved away that I failed to complete my mission of adding these organisms to her daily formula intake. I sure noticed the difference this year with her suffering some G.I problems. Until recently, I wasn’t sure why. I quickly found my answer when I put her back on the full-recommended “Probiotics” dose a few weeks ago.
So, if you ask me again, why am I giving my child Bacteria? I can truly say they are the friendliest that I have ever encountered…

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

Time Out...

I just finished reading an Internet article that described so clearly how I felt this morning when Alex was put in time-out. It seemed as if this article was written just for me as it described my insecurities towards this time-out situation. As a mom of a special needs kid, I tend to be overprotective when it comes to disciplining Alex. I’ve been told that she has her mommy wrapped around her little pinky finger and knows just how to push my buttons to get what she wants. I am slowly beginning to realize that as I aim at setting firmer rules and limits to what she can and cannot do. I’ve had to talk to therapists and read article to determine how on earth to deal with discipline with a special needs child, specially, one being so cute but so stubborn and strong willed. My quest led me to this article and I summarize here the steps that I found helpful in clearing the situation:
1. Do discipline your child but have realistic expectation based on your child’s developmental age.
2. Be consistent in your discipline methods.
3. Have a plan of action, so think ahead, before an incidence occurs so you are prepared for the proper discipline.
4. Keep the child on a daily structured routine.
5. Set limits and rules for the child.
6. Stay calm and reinforce good behavior.
The full article can be found at: Discipline and Special Needs Kids. With all that in mind, I still felt my heart breaking while my daughter completed her time-out in her bedroom for misbehaving this morning. All I wanted to do was go in there and hug her but my not caving in to my emotions did pay off when she acted so much better the rest of the day after her time-out was over…

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

Good Days...

Alex has had two very good days. I say this with a lot of excitement and thrill. It is days like these that disability and special needs are shed aside and the true child emerges. A child who is happy, loving and playful. I joke to my friends that all the stars and moons must be lined up just right for Alex to have such a great day. I wish and pray that I can give her good days every day but that is beyond my control. Her medical needs still take over most days, which make simple things more complex to handle. All I can say is that I cherish every moment, the good ones and the tough ones. It is the challenges that make us stronger. Having had Alex has definitely made me a stronger and more aggressive person. I needed to learn those traits in order to embark on my daily fights for my child’s needs..

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

Count your blessings...

I am having a terrible writer's block today. It is already very late in the evening and I still can't seem to come up with material I want to share. As I looked frantically for any worthy piece on my harddrive, I came across this beautiful picture and prayer that I had saved so many moons ago. I must admit, it brought me a sense of peace. It reminded me so much of what my sister told me over a phone call that we had this morning. She said: "Sis, things may be tough for you and Alex but you must count your blessings. You must be thankful and acccept the cards that were dealt you in order to prosper and achieve additional blessings." I've been thinking about that all day today and decided to share it in this post with this prayer.
Lord, help me to turn to you when my
troubles seem too big to face alone and even
when they don't.
Help me to trust you with all of my cares.
I love you Lord.
Amen.




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

Celebrating Friendships..

One of the most important gifts that Alex has brought into my life are the special people that I met through her. Most of those people have become dear friends for life. Without her unintentional intervention, I may not have met these friends. Throughout these past nine years I have stopped looking at nurses, therapists or caregivers as just professionals providing a service for my daughter but rather as humans entering our lives and many becoming an integral part of our existence. Friendship is a unique gift that I cherish. My friends are my support system. I count on them and they are always there. Today, Alex and I celebrated two such friends with a wonderful lunch, cake and our weekly library visit. I salute you my friends and am blessed to have you in our lives….

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

Calling it Quits...

When Alex came home from the NICU 8 years ago, she used to have a terrible time falling asleep in the evening. I would have to cradle her, and rock her while I paced our home for hours on end until she was able to transition from her day and surrender unto the slumber of sleep. After years of therapy, some conventional and others alternative, and more growth combined with a whole lot of love, she seemed to get better. She would climb into bed and, as long as I was with her cradling her, she would start sucking her thumb and drift away. I had actually forgotten these difficulties until last night when she had that same incident occur. She was inconsolable and could not get calm enough to go to sleep. Being older, and heavier, I just couldn’t rock her like I used to. I found it rather frustrating, as a mom to just stand on the sideline unable to fix whatever was bothering my child. I had to just watch her run from one end of the room to the next until she finally called it quits and settled down hours later. Moms are supposed to make it all better, but when those times come that are beyond my control, I have to learn that there is only so much I can do. I have to leave the rest to sort itself out…

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

Lessons Learned....

I’ve always been what can be termed as a "TRIPLE A" personality. I don’t beat around the bush and like to get things done earlier rather than later. If I have to be somewhere, I would arrive at least 10 minutes early. Things have to be done just the right way to satisfy my desire for perfection. I make sure that my I’s are dotted and my T’s are crossed just so.. You probably get the picture…
With this in mind, I find myself having to slow down when it comes to Alex. It is her schedule and not mine that rules. Her medical status doesn’t allow for things to be rushed. I’m having to learn to let go of some things as they are taken out of my control.
She continues to have difficulties in the mornings when she wakes up. It has become fruitless for me to rush her into the morning routine in order to get her to school on time. I realize that this destructive rush will only have a domino effect which can turn the entire day into a disaster. As you have guessed by now, we’ve had this kind of morning today. Her tummy is hurting due to an on going constipation problem. This opens up the door for vomiting and severe mucus accumulation. She is staying home today until this situation is resolved. I come to accept that my to-do-list for today is just going to have to wait until tomorrow…

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

Recipe....

As part of Alex’s therapy, we have been trying desperately to have teach her to play with, and enjoy “Play Dough”. The goal is to desensitize her to the texture as well as to show her how creative she can get with this mixture. Due to her various sensitivities, and the fact that she still mouths objects for stimulation reasons, I was concerned about having her use “Play Dough” due to the chemicals that may be involved in the mixture. A friend of mine passed on this recipe for making Play Dough using natural ingredients (Thank you S). Your child may help assist in making it and thus it will be extra special to him or her.
Caution: Many children with special needs have swallowing problem so please be careful and make sure your child does not swallow pieces that can choke or harm in anyway.
Enjoy this posting..

PLAY DOUGH RECIPE

1 cup flour
½ cup salt
2 teaspoon cream of Tartar
1 cup water
1 Tablespoon cooling oil
Food coloring

Put all the ingredients in a saucepan and cook over medium heat, stirring constantly until the mixture forms a ball and pulls away from the pan. Knead on a flour-covered surface until cool. Store in an airtight container.

Sharing...

Every once in a while a forwarded email touches our hearts. The one I am about to share with you today has definitely touched mine and many others. It was forwarded to me over four years ago. I have not had the heart to delete it from my in-box all this time. It sure survived the various storms, viruses and computer mishaps that my system has undergone these past few years. Even though it is written for a daughter's birth, it can sure reflects a son's just the same.

With this in mind, I present it to all you special moms, dads and kids out there.. Enjoy it…

Heaven's Special Child
A meeting was held quite far from earth.
"It's time again for a special birth,"
Said the Angels to the Lord above.

"This special child will need much love.
her progress may seem very slow,
Accomplishments she may not show,

And she'll require extra care,
From the folks she meets way down there.
She may not run or laugh or play;
Her thoughts may seem quite far away.

In many ways, she won't adapt,
And she may be termed as handicapped.
So let's be careful where she's sent,
We want her life to be content.

Please, Lord find parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,

But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given,

In caring for this gift from HEAVEN.

Their precious charge, so meak and mild
Is HEAVEN"S very special child.

by Edna Massionilla

December 1981

The Optomist-

newsletter for PROUDParents

Regional Outreach for Understanding Down's Inc.

http://www.our-kids.org/Archives/Heavens_special_child.html

Reminiscencing…

As I watched Alexandra giggling and rolling on the couch with her legs and arms flying in all kinds of directions in the air this afternoon, I couldn’t help but remember my first image of her as she came out of the womb 9 years ago.

Even though she was born at 25 ½ weeks gestation, she was feisty, all 8 inches of her. Her entire body was so small that it was practically covered by the nurse’s palm that held her. You see, my Alex weighed only 12 ounces at birth and measured 8 inches in length. The only visible active portion of her that I could see were those arms and legs flying in all kinds of directions. She was probably doing her own victory dance at that time celebrating being out of the suffocating environment that she was confined in. I had developed preeclampsia in my fifth month of pregnancy so the womb that was supposed to sustain her was actually chocking her as my amniotic water kept depleting.

That day back in 1998 was a difficult day and a start of a long hard road for Alex and us. However, I couldn’t help but count our blessings today as I saw her laughing after being tickled as she actively listened and danced to her dad’s blue’s video. I thanked the Lord for his many mercies..

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