Monday, February 24, 2020

Have you lived the worst day of your life? Lucky you..
I was talking to a friend about Tala, that we're going to a sleep clinic to spend the night and hook her up to machines so we can figure out why she can't sleep at night.. my friend then asked me "how do you do that? How are you telling me this so lightly and we were just laughing and joking as if you have nothing on your mind"
I have to say i didnt find an answer back then other than " i got used to it"
But actually its because I've lived much much worse days than this. I lived through a doctor telling me my child won't make it past 5 years old. I survived after reading her genetic test and knowing that she will never lead an easy life. Me and ali went through hell with doctors and reports and tests and bullying and fear. when you live the worst day of your life things fall into perspective, you start giving every situation the right amount of sadness and worry and fear. You kill the drama queen living in your head..
So that day when you spilled your coffee and you had a flat tire becomes an annoying day not " the worst day of your life"
Scarred for life is not really a bad thing, your scar will always be your compass. You will get to look back at it and remind yourself that you survived this scar. you see things clearly and you mature.. you understand that life will never be easy, you will always face challenges and you need to go through it, live it , feel the pain and conquer it.. enjoy your triumph and fuel up for the next one. Words are easy and sometimes you just feel so bad that something as simple as a bad hair day would tick you off, i know that feeling but just believe in your strength, believe in your ability, believe in the super hero living inside you. Scars make you rise, they make you rise above life itself. Life is worthless. Its your presence that gives it its worth. I watch Tala and I learn from her, God sent me an angel to teach me how to live.. Tala fights every second of the day but she enjoys every moment. She indulges with all her senses a donut like its a donut from heaven.. a cold breeze on her face makes her laugh so hard. An ant is on her chair, she invites it for dinner. Tala rises above her disability, she rises above a horrible day in therapy. Tala's life is full of bad days and scars and tears but she chooses to live every beautiful happy thing life has to offer. Tala is my compass, my light, my love.
What i feared to be a nightmare became my guiding star in the middle of a dark night.

Sunday, November 17, 2019

I was talking to a very dear student of mine who always asks about Tala and hows she doing then he asked me a question that made me think. " did you get used to Talas situation by now?"
Did i get used to it? I dont know.. should i get used to it by now and im not putting in the effort? The question hit me..
Then i thought to myself getting used to something stops challenging you.. get used to being happy, you'll take it forgranted.. get used to sickness you'll stop fighting, get used to abuse you'll stop asking for your rights.. there's a huge difference between accepting the pain and giving in to it.. I hear people saying things like " i got used to being alone" if you're happy like that, fine but if you're not then dont force yourself to like it. Accept that youre on a wheel chair but dont get used to the idea that this chair will stop you from doing the things you love.. because the moment you give in, is the moment you let go of your freedom and let your circumstances dictate what you can and can't do..
If i stopped feeling like my heart is being shredded into pieces whenever i think of Talas future maybe i'll stop fighting for a better one for her.. i accept the challenge but i will never allow myself to get used to it.. i will keep reminding self where we were and where we are now because we didn't settle..
There are days when i look in the mirror and i dont see myself anymore.. i dont see the young, fun Rola i know.. every time i went to a doctor visit with Tala i feel like ive aged 10 years.. there are days when i literally feel like im drowning.. i cant breathe.. but now because of this question my beloved student, i thank God with all my heart that he makes me feel this way sometimes cause thats what keeps pushing me to be better.. to take control of my life and be what i want to be..
So dont get used to being sad, or beaten, or sick.. dont get used to being over weight it underweight or being in any shape or form you dont like.. know that feeling bad about your situation means that you still want to fix it.. you did not give up.. but remember always fight with a smile just like tuli:)))

Saturday, February 3, 2018

Children with sensory processing disorder can have trouble sleeping which is a very tiresome situation for the parents and the child.
Here are some ideas you can try that can help ( I tried some of them, sometimes they work and sometimes they don't, but it's worth a try)
1- deep joint compression before they go to bed (

2- don't give dairy products before bed time
3- no iPads or phones or any screen time two hours before bed
4- massage using magnesium oil especially the souls of the feet then cover with socks) I will try this as soon as I get the magnesium oil and give you all feedback. I found the magnesium oil sold online on a page called black lotus
5- give your child a stress ball
6- using the big gym ball, let your child sit on it and press on their shoulders down so try bounce on the ball.
Then have them sleep on their tummy on the ball and roll the ball front and back..
I found this video very useful
I'm going to try these techniques the coming month and let you all know how did it go
If you're not sure what to do please as our doctor or therapist. I'm just giving you ideas to ask your doctor about as sometimes they will not offer you these solutions unless you ask about them.

Have a great day and hopefully a good night sleep 😴

Monday, January 15, 2018

With the beginning of 2018, me and Ali decided we will take Tala off her 6 hour a day therapy plan and put her in a more flexible plan..
We listed her priorities and our number one priority was her happiness and comfort.
Lately we noticed that Tala had an attitude problem where she just says no for everything.. she hates getting dressed in the morning, she refuses every instruction we give her..
I thought that she’s developing behavioral problems but when we gave her some time off therapy and spent more quality time with her, her sleep pattern became better and her attitude toned down..
We talked about it, and we decided that we will follow our guts on this.
Here is our current plan versus our old plan:
1-    Tala will go to Nursery full time instead of ½ an hour a day
2-    We hired a shadow teacher who will accompany Tala in the nursery and in all her therapies to learn how to deal with her and what kind of help she needs
3-    We booked sessions, three days a week only and we chose what she needs the most.
Then we will re-assess this decision in three months and see if we are on the right track or not.

Taking this decision was not easy for us at all because I’m not sure if what im doing is right for her or not. What I see in front of me right now is a happier Tala, a more calm Tala..
I personally believe that a happier child will develop better, maybe slower but surely better.. I need my child to feel like she’s a child, I need to give her room for her own imagination, I want her to be comfortable with what she’s doing.. She’s not a robot that needs programming.. she’s a human being first before she’s a challenged kid.
If this decision will make her happier and at the same time help her develop at a steady pace then I will go on with it.
And to be honest, its not only Tala who’s happier, we are happier parents.. we feel somehow normal.. we get a channel book from the nursery asking us to send art stuff for Tala, we get to see her pictures playing with other kids, we get to talk with other parents about the nursery and what’s going on there.
I have to admit that this made us more relaxed, seeing our child happy and excited about going to the nursery, not crying and begging us that she wants to stay at home and not leave the house.
I’m sharing this experience with other parents to tell you that, yes, therapists do know what’s good for your child but you know what’s best.
Give your children a break, spend quality time with them.. give their minds a break.. a relaxed brain processes information much better than a cluttered one.
More is not always better, sometimes less but rich is much much better for you and your child.

Stop, write a list of where your child is and what does he need now and slow down..

Thursday, November 2, 2017

Will it ever be easy?
This question crosses my mind almost every day.. I used to tell myself when Tala starts standing up my life will be a little bit easier, when she walks life will be easier.. and so on.. I always think that every milestone she reaches life will be easier just to discover that as she grows up her needs grow with her and there's always a high bar that's really difficult to reach.. and living in a country where there's minimal help with challenged kids makes the bar seem unreachable.. it makes me question my strength.. my abilities.. it makes me feel guilty that I'm not working hard enough.. it makes me pissed off at people who make comments like "thank God she's not as bad as it can be"..
will it ever be easier?
To Find a nursery that will accept my child, a nursery that's ready to go the extra mile to include my child, to find a school that will tell me " of course, your child deserves a fair chance for education like all other kids", to find a facility that will not rip me off to help my child, to find someone who would help in educating parents on how to deal with their challenged kid to get the best out of him, to find a doctor who would understand my frustration and take it easy on me and give his time to explain to me and walk me through my child's prognosis..
will it ever be easier?
To see my child rejected from nurseries and schools just because there's no one to sit next to her? Because the school can't provide a shadow teacher to help my child? To teach me how can I help my child?
Will it ever be easier?
To see parents take their kids away from my child just because she looks different or acts differently?
Will it ever get easier? To feel like I'm at war with time.. I need to beat time and get my child to the place that others think she's supposed to be just to be accepted?
To go out and not find any place that's designed to accommodate disabilities in any kind?
To find medication needed by my child easily and with a reasonable price?
To find materials that she needs to perform certain therapies?
I'm not writing this post to get any kind of sympathy, I don't need it, I need to see change..
 I'm just giving you a piece of any parent of a challenged kid's mind so the next time you decide to cast away the child cause you're too lazy to think outside the box and find a solution to help the parent and the kid, you remember this post.. you remember that you are privileged not because you are so smart but because you just got lucky.. you could've been easily in this parents shoes but you got lucky.. thank God for that and start helping others.
Instead of using a child's disability as an excuse to cast him aside, use it to challenge yourself.. how can you help? How can you make it work? Instead of taking the easy way out of " I'm sorry I'm not equipped to take the responsibility"
A parent of a challenged kid has it as hard as it can be.. there's no need to make it harder..

Change your attitude, there's always a way!!! 

Sunday, June 4, 2017

Our Journey with rehabilitation:
So now we know Tala’s condition.. it sunk in.. now we need to swallow all the pain and all the sense of how unfair the situation is and get up and take action..
Except that “where should we start?” this area is very shady and dark and basically a taboo..
We started by calling Dr Nasser Gamal, Tala’s paediatrician who advised us to contact a genetics doctor..
At this point I didn’t know what to ask, Tala’s case has no name so I didn’t even know what to look for on the internet. I tried reading about chromosome 9 but I all I can find is a condition called trisomy, which means that chromosome 9 has three arms instead of 2 which was not Tala’s case. Tala had two arms but one of them had genes deleted completely and genes duplicated..

Let me explain this as simple as possible.. each person has 46 chromosomes in every single cell of your body. Each chromosome is made of two arms.. every arm carries very specific genes.. Genes are like a computer code, they have to be very very accurate and specific for each person. These genes control every single detail about you.. from how you chew your food to the color of your eyes, to how you control your movements.. every single thing that makes you who you are.. and just like any computer code, one single change in this code will mess things up.. so having extra genes or gene deletion affects your whole system.. depending on which genes are duplicated or deleted, certain areas in development are affected..

With Tala she had both, genes duplicated and genes deleted..

We went to Dr Ahmed Darwish (genetics doctor) who advised us to take one step  at a time a don’t jump to conclusions and never ever compare Tala to other kids.. compare her progress to where she was and where she is now..
This sounds easy but it’s not.. It took a lot of practice to stop comparing her to others.. this was four years ago and I’m practicing..
Then he told us that different genetic disorders have similar symptoms but to different extents so he advised we read about other cases and observe Tala very closely..

We started our rehabilitation centers hunt..
Searched the internet, asked doctors where to go and there were very limited options..

Now here is my advice to you from my experience with all the therapies we’ve been through..
1)   Keep a journal about your child and write in it every single detail about your child.. everything you observe no matter how trivial it is..
2)   Keep track of the dates, when did you start therapy, when did you run labs and staple the results..
3)   Download from the internet the milestone developments checklist and follow your child’s development
4)   Attend therapies and ask doctors how you can help your child at home.. you can even videotape yourself at home working with your child and show it to your therapists and see if you’re working correctly or not..
5)   Read a lot about your child’s case, find blogs of mothers with similar cases and see what they did.. learning from mothers is the best way to learn..
6)   Try to buy books about games and activities that you can do at home..
7)   Take your child out and play together.. arrange play dates with your friends children.. people who know your child’s case will learn with you how to deal with your child..
8)   Take short breaks from all the therapies and be a mother.. just a loving, caring mother who loves her child the way she is.. feeling loved and accepted by you is the most important thing that will push your child forward.
9)   Take pictures and videos with dates of your child doing new things so you can go back to these videos and see how he’s become different..
10)                 Ask for help when you need it.

Monday, May 15, 2017

5 years ago I watched a movie called 127 hours, it’s based on a true story of a mountaineer who got trapped in the mountains when a boulder falls on his arm and he was stuck there for 5 days..
In the movie James Franco said something that stuck in my mind ever since. He said “this rock has been here waiting for me since I was born and everything in my life has lead me to it, lead me to this moment” I was fascinated by this epiphany and it came to my mind when I had Tala.. when it was really dark moments and everything seemed impossible.. this thought popped in my mind..
Tala has been waiting for me since I was born.. she was a floating soul waiting for me to grow up and have her.. and everything I went through in my life has lead me and prepared me to having her..
Then I went deeper into this thought..
I thought of my mom.. How she raised us.. my mom taught me independence since I was a child.. If I had a problem at school, she would sit and talk to me and advise me but she never took matters in her hand. She guided me to handle my own problems myself..
She encouraged me to enroll in any school performance and stand on stage and talk confidently and loudly and clearly. She used to practice with me how will I stand in front of the whole school and say the morning word without shaking..
My mom encouraged me to work when I was in high school..
My mom encouraged me to read a lot, if I want to know about something, then go to the library look for a book that covers this subject and read about it..
My mom is the biggest reason I’m prepared to handle Tala.. because I learnt ever since I was in grade 1 to take matters in my own hands.. I learnt to find a way to solve my problems.. I learnt not to be scared to ask and face anything that comes in my way.
I learnt to look up information and research.. not only depend on what people tell me and this made a world of difference with Tala.
My mom had her share of challenges herself, I watched her rise above her problems and be the fun, loving mother she is.. not only that, she is successful at her work as well.. So I too will rise above Talas challenges and have fun with her and love her and be successful at my job..

Then I went to college, faculty of pharmacy. Back then I knew I wanted to be a teacher, it’s my passion ever since I can remember.. so a lot of people asked me “why trouble yourself in pharmacy if you want to be a teacher?”
Back then, my answer was I loved science and specifically chemistry.. which wasn’t really a satisfying answer.. Now I know why I went to faculty of pharmacy.. I have a slight medical background, I used to read a lot of books about medicine which made it easier for me to understand medical terms used by Talas doctors.. I know how to ask them questions.. when I read an article about genetics or any medical journal that will help me in understanding Talas case more, it’s easy for me..

I work as a teacher now and sometimes people wonder why leave pharmacy and be a teacher.. being a teacher taught me patience, taught me that there a million ways to reach a persons mind. It helped me a lot when I work with Tala.. I have the capacity to handle her slow ability to grasp certain concepts, cause I deal with that everyday with my students..
Being a teacher taught me scheduling and managing time and any mother needs these skills with her kids..

Then I took a homeopathy course, which a holistic approach of alternative medicine.. this course taught me that each person is unique in his own way and that you have to deal with every persons symptoms like it’s his own set of symptoms.. don’t put your expectations or your beliefs or what you learnt into the patients experience.. listen to what he has to say only..
This made me look at Tala the same way.. she is unique.. she is literally unique, she’s the only reported case in Egypt and number 7 in the world with this genetic disorder.. but I learnt that I don’t put my expectations or my vision of the perfect child on her.. I learnt to see her perfect traits and enrich them.. I learnt to see her the way she is, not the way I want her to be..

It’s a lot of work and not a walk in the park definitely.. and there a lot of days when I feel like I’m in a whirlpool being sucked down and not able to breathe.. but then, they are just days that pass by like any other day.. Life has to go on and the earth will never stop turning.. so enjoy your ride while you’re on it because your whole life has lead you to where you are now.. so be sure that you are well prepared to handle whatever comes your way.. and allowing yourself to break down and cry and feel miserable is part of handling it.. just be sure to get back up and ride the wave to the top again..

This is how I saw my life and how it took me to my beautiful Tala who was hanging around the corner the whole time waiting for me very patiently.. I encourage everyone to look back at their life and I’m sure you will discover a lot about yourself that you didn’t know or maybe you knew but didn’t really realize it at the time..

Have a wonderful dayJ