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Im a mother. A mother to two beautiful twin boys. My boys are my world. Unfortunately one of them is very sick. Battling with seizures, Neurofibromatosis 1 (NF1) and many other issues including Autism. But his drive to learn, his drive to assert his presence is what pushes me to find a cure. A cure for the incureable. Here I am, Playing God. Playing God to him, to my Tuti, to his brother, and most of all to our family. Im just a mother, a mother who is playing God to my Tuti. My Tuti Fruiti

Wednesday, August 7, 2013

I love this photo. To an outsider this may seem like an ordinary nice sunny day at the park. To me it resembles much more than a nice day. To me this photo holds many emotions. Many different emotions.  Sad ones. Happy ones. It's one of my favourite photos of Tuti and me. I love him. I love this boy so much. I love this boy more than I thought I'm capable of loving. And I'm going to leave it at that. 

Monday, August 5, 2013

The Endless Moment...

I'm still here, I'm around. It's been four months since I have written anything. I was mentally and emotionally blocked. I still am in a way but I had a conversation today. I had a conversation with a complete stranger. A stranger I got connected with via a friend. And she somehow unveiled the very core of this dark blockage that I have been feeling. She reminded me of something very very important. Something I used to believe in but lost amidst the fears, the anxieties the future. She reminded me of the "moment". Enjoying the moment. 

As I looked back, looked back in time, I realized that somewhere I stopped. I stopped believing in the moment. I stopped enjoying it, but instead I found myself running. Running a marathon. A marathon that doesn't seem to end. A marathon against time. A marathon that left me gasping for air. Gasping and gasping. Almost, almost to point of suffocation. And that's, that's were I became somehow paralyzed mentally. Mentally and emotionally. But, but I'm back :) 

Right now, this very second, I stopped running. I didnt quit, but instead of running I'm going to walk. Walk slowly. Walk slowly towards that finish line. And enjoy. Enjoy my surroundings. Enjoy my Tuti, Enjoy my batman. And most importantly, most importantly I'm going to enjoy the Moment. The Endless Moment...

Tuesday, February 19, 2013

My Incredible Hulk...

The dreaded MRI is tomorrow. I'm nervous. Very nervous. I hate seeing him sedated. I hate having him straddled to be sedated. I hate watching him look right into my eyes, screaming. Screaming silently with pain. His eyes are begging me, pleading with me, to stop them. I hate everything about tomorrow and I'm not even at tomorrow yet.

A boy with no voice. No voice to let me know what's going on inside his mind. What he wants. What he needs. A boy with no voice. But he is trying so hard. A boy with no voice yet his eyes says so much. A boy with no voice, but his cuddles are a million times no a gazillion times worth more than the words I love you. A boy with no voice.

I just want this MRI over and done with. I know that we have to embark on the same journey over and over and over. I know that we are doing this for his own good. I know. I know but I still hate it. I still hate to see him suffer. Suffer even if its just for a few hours. My little boy. My little baby boy. But I know, he will be my hulk. Yes. Just like last time. My Incredible Hulk...

Friday, February 8, 2013

The Prized Greasy Oil

A few weeks ago I get a call from Tuti's therapy place letting me know that a new physical therapist will see him during one of his sessions. As a mother of a special needs child the words "new therapist" does not exist in your dictionary. Infact you have deleted it completely from your brain cells. You become extremely possessive about your child's therapists. And I mean extremely possessive. If one of them leaves its like I'm mourning their death. Im mourning everything they have achieved with my child. I end up crying and thinking that I'm doomed. Tuti is doomed. Those feelings tend to linger for a long long time until someone really great comes along and we start the cycle again.

But because the one that's been substituted was fairly new too, I didn't mind. Not this time. So I go pick him up after his session with this new PT. She comes running to me talking so fast that I can barely keep up. I doubt she used a single full stop or a coma in her sentences and All I could hear from her was sensory this, sensory that, sensory input, sensory output then out of the blue she grabs a hard ball and starts demonstrating on me. She shoved the ball so hard on my back I almost fell off the bench. Then she started pressing harder and harder all over my back on my arms on my neck all the while she was talking and talking. I wanted to scream, I GOT THE FRIGGIN point! Then she takes out a cheap baby lotion and as she was unscrewing the top I thought whoa whoa stop right there lady, keep your hands to yourself, but instead I said very calmly I don't do lotions. But I need to show you what I did to him, she said. No thank you I said I really have a strong aversion to lotions. She looked at me as if I'm a crazy woman. But I really do have an aversion to lotions on my body. Typing this now is making me realize how similar Tuti and I really are. Heck I think I definitely need some occupational therapy myself.

She went on and on about the sensory issues then she ended her sentence with, watch how he is going to sleep like a baby tonight. I look around and see Tuti racing up and down the gym, going up and down the slide, and running from wall to wall non stop with him squealing. OH MY DEAR GOD, what the hell did she do to my child???!!! Tuti has been over stimulated! And he has gone Loco. Sleep like a baby? Yeah sure! That night it took me two hours, two hours to make him fall asleep and not only that, but he woke up three hours later wanting to play while I sat there in bed cursing the S*** out of that woman! Now you see why the words new therapist doesn't go down well in my system?

Now on to something else. I've been learning alot about this public school system. Thanks to an amazing mom who I met through Tuti's school. We hit it off right away and she became my one and only confidant. She has gone through hell to switch her son schools, and even though many people told her its a lost battle, she did it. She did it on her own. And now she knows all the ins and outs to get her son the services he needs. I never ever thought that I needed to fight and I mean really fight to make people do things.

Tuti has been progressing but it's like he reached this standstill. I had no idea what they were teaching him in school. All I knew that after him being there four months, they still can't seem to find ways to feed him. A very very big issue. When I first learnt he was entering this school I was delirious with happiness. It's the best school everyone kept telling me. The best. I thought to myself eureka they're going to get Tuti to finally eat real food instead of the baby purees he is on. Heck they can't even feed him the purees let alone make him try new things. That's when I realized that the best doesn't always mean the best. And it's not just the feeding it's many many other things. They don't challenge him. And Tuti needs to be challenged. He thrives on challenges just like me.

My friend then taught me to push them. Push the teachers, ask questions, be pro active, go to workshops. And sure enough, I am becoming that mom. My friend also taught me a new expression. I love learning new expressions :) I have become that mom, that mom that squeaks because after all, "a squeaky wheel gets the oil". And I'm sure as hell I'm going to get that oil. The Prized Greasy Oil...

Saturday, January 19, 2013

Bright like a Star...

The last two weeks I have been struggling. Struggling not to hit rock bottom. Tuti had gone back to his shell. His cave. His cocoon. I had no idea why. And I got scared. I didn't want to lose him. I didn't want to lose him AGAIN. Hubby was here but I couldn't tell him. I couldn't tell him how I felt. I was smiling on the outside but dying in the inside. I wanted to scream. Oh my god how much I wanted to scream. Scream at the top of my lungs. In fact I was screaming but, silently.

I began to push Tuti. Push him to do things. Force him. I needed to know if he still knew things. I needed to see if he was regressing. I would push him to do a puzzle that I know he knew so well. But he would push it away. I was angry. Furious. I told him don't do this to me. Don't! But he kept pushing it away and pushing me away. I picked him up with force sat him in my lap held his arms tight and pushed the puzzle in his hands. Do it Tuti I shouted. Do it! There wasn't just anger in my voice but an urgency. A fear. He started crying. But I didn't give up. I didn't give up until he gave me what I wanted.

But why was he being like that. Why be so defiant. I would ask him questions about certain books that I know he knows but he would just sit there and give me that blank look. How much I hate that blank look. I hate it with a vengeance. He hasn't had proper ABA therapy at home since before Thanks Giving. His Therapist left. And I found another one through his school but we never really started the therapy yet. I just feel his progress has stagnated. And I'm mad. Very very mad. It also seems to me that in school he is not being challenged. Challenged enough and Tuti needs to be challenged. He needs new things, complex things.

As for speech, the child has been doing speech therapy for almost two years now. Two bloody years. And nothing. Nothing comes out of his mouth except for babbling. Ok babbling is good. Babbling is great. But I need more. I need more than this. I don't expect Tuti to talk or tell me how his day went in school. I mean that would be fantastic but thats not on my expectations list. I just want him to say words. Simple words. I will be happy if he said mama to mean me or milk to mean milk. I just want him to get by. I want him to be able to let us know what he wants, which in a way he does using his picture book, but still. Still I'm not satisfied.

When I relayed my needs to his speech therapist she just looked at me and said "well you have to admit that he came a long way" OK I get that. Yes. Yes he did come a long way. Yes he is a different child from where we started. But this is no excuse. No excuse for him NOT to progress any further. The boy needs help! And I need the right people. The right people to help him.

I don't want him to miss the train. The journey is long very long. And each stop is entertwined with the next one. If he misses one then there's no way he will get to the other. I'm not going to give up. I simply cant. I don't want to be that mother, that mother who didnt do much. No. Right now the light is very dim. But I'm sure, I'm sure it's going to be bright. Bright like a star...

Wednesday, January 9, 2013

Above and Beyond...

It's been extremely long since I've written. The holidays went by so fast. Too fast for my own liking. I enjoyed having hubby around and the boys were just having a blast. Tuti seems to have just blossomed. He is different. Very different. Happier. Much much happier.

Even though he has been sick the first week of the holidays, he still managed to light up our days. I love this boy so much. But today. Today I have a few words. A few words for the family that was in the waiting room with us at the doctors. Yeah school starts and guess where we end up in? Yup that's right the doctors office. I'm so embarrassed already. I used to tell him that I see him more than I see my own husband but today today I just thought these words were far too lame far too used. Maybe because what I heard in that waiting room took over my thoughts. Took over my soul.

As I was playing with Tuti in the waiting room I see a couple with their daughter. The woman was veiled so I knew she was from the Middle East or Asia. I heard them talk and sure enough they were Arabs. I just continued playing with Tuti, tickling him just so I can hear his cute laughter and squeals of delight. The little girl with the arab family would squeal too from his laughter. Then Tuti started to babble like he always does when he is super happy. The woman then turned to her husband and said in Arabic "the boy is abnormal" if I tell you that these words felt like a dagger I would be lying. These words felt worse than a dagger. Much worse.

These words killed me. Killed every ounce of happiness I had in me. I continued playing with Tuti but my mind was with that couple. I sooooo wanted to reply in Arabic and say no, no he is not abnormal. He is a child. A baby. A baby that had many issues. A baby that saw hospital rooms more than you or your husband did. A child that had to be wired days upon days every few months. a child that had to be sedated many times for his MRI's. A child that went through a miraculous transformation. No he is not abnormal. He is a beautiful boy with a heart bigger than this universe. No, no he is not abnormal. He is beyond Normal. Yes Tuti is beyond normal. Him and his peers are by far better than all the children around. They are above them. They are smarter than them. No these kids are not abnormal.

Maybe maybe if they knew I was Arab too they wouldn't have said it so loudly. Yeah maybe. Maybe my people should be more educated. More exposed. They should know to never ever utter hurtful words towards a mother. A mother who spends most of her time trying her hardest to be strong. To be tough. To be a super mom. A mother who spends many days trying to find answers and solutions. No, no Tuti is not abnormal. He is just above and beyond these types of people. Yes. Above and Beyond...

Tuesday, December 18, 2012

The Notorious Deadly Means...

The shooting that took place just killed me. It broke my heart. It broke my heart for many many reasons. One being of course the loss of such beautiful children. It broke my heart that the last thing they heard were shots. Shots at them. The last thing they saw were their friends falling down on the floor blood covering their beautiful innocent bodies. It broke my heart. It really did. The fear they were going through, the anguish. The cries. The wimpers. It broke my heart.

It broke my heart for the children that survived. What were they thinking? What was going through their minds? It broke my heart for the teachers. The teachers that didn't make it. It broke my heart for the teachers, the teachers that did. And let's not even divulge onto the subject of the parents. Those parents that lost their children. I cannot, I cannot even imagine the heartbreak the permanent heartbreak that these parents have and will ever have forever.

To me this was an avoidable tragedy. Yes avoidable. Why can't the state provide for every school one or two officers that can guard it? Why does the president have security guards? Is our children's blood cheaper than his? Is their life not worth as much as his? Why? Aren't these children our future? The future of this country? I'm appalled. Appalled that we spend millions on secondary issues and ignore the most important things. And, and it breaks my heart.

This shooting happened in a so called "typical" school environment where children can somehow understand that when the teacher says stay quiet, they will, mostly. But god god forbid, it happens in a school like Tuti's where almost all the children are not so "typical" and will NOT understand. Will not understand the urgency of the situation. They will scream, they will jump, they will run around. What then? What happens then? It's frightening. Very very frightening. And every single time, every single time that I think about it I shake my head to shake away that thought. That horrid horrid thought. And it breaks my heart...

So tell me, tell me really. Tell me in all honesty that this tragedy and many many others weren't avoidable. Ok so protecting schools is very expensive. What about gun control? is that expensive too? is that issue not as important? They blamed the shootings on mental illness. Sure that's an issue, a major issue, but a mentally ill person will not be able to harm others if he didn't have the means. And in this instance and the other instances they all had the means. The deadly weapons were right there. An easy reach. So no don't blame it on him. Don't blame it on his mother. Blame it on the government on the government that provided the bait. And, and it breaks my heart...

The government provided this boy and all the other shooters the means. The Notorious Deadly Means...

Thursday, December 6, 2012

His Pure Tiny Loving Kiss...

Expectations. I have learnt through certain harsh experiences in my life not to over expect. I used to have pretty high bars set for myself. Some I reached and others, others just kicked me down. Kicked me hard. Kicked me real hard and it hurt. Really hurt. And that was way before the boys coming into my life. But I learnt. I learnt from it.

With Tuti, with Tuti it's not about expectations. It's more about hopes. Hopes and desires. Do I expect him to talk up a storm anytime soon? No. But do I hope that one day he will, sure! Do I expect him to be this genius child who is going to learn about functionality and independence? Nope. But do I hope that one day he will be able to be independent? Definitely! They are two different things yet at the same time so entertwined.

And that's where, that's where hubby and I differ. He expects. Expects alot from Tuti. And when it doesn't happen he is all doom and gloom. And he, he shuts himself out. Shuts himself out and refuses, refuses to see the other good stuff that's happening.

Every mothers initial wish is to hear her child say mama. To have her child hug her. Hug her real tight and kiss her. It's every mother's wish. With Tuti I never experienced that. Never. He used to say mama when he wanted milk and that was when he was 10 months old. But that was then. And he stopped. He stopped for me to never hear these words ever again. It hurt me. It broke my heart. It killed me. And maybe, maybe hearing it from batman eased away abit abit of that pain. But the pain remained. Never went away. It just got burried. Burried deep inside. Hoping, hoping that maybe, maybe one day I will get to hear it again.

A few weeks ago Tuti started saying mama. He doesn't say it to my face but he says it when he is looking for me. The first time, the first time I heard it I was surprised. But I thought it was one of those babbling sounds he makes. Which he's been doing alot of lately. But he began saying it more and more. And I know he says it to mean he wants me, he never says it to get my attention though. But it's a start. A great start.

The past two days Tuti has been different. Happier. Curious. His eye contact has become much better. Coincidently these past two days he hasn't been on one of the supplements that I usually give him. And no. It wasn't by choice. We ran out and when I tried to order it, the company that made it was out of stock. I so wanted to kick myself in the bum. I usually never keep it last minute but I was overwhelmed with their sickness and when I wanted to order it for expedited shipping, I was slapped in the face. It was no longer in stock! But it got me curious. Curious to see how he does without it. And I am shocked, shocked to see such a difference. The only con of him not having it is his sitting still. Now Tuti is back. Back to the walking and running to and fro. He doesn't sit still. He just moves around non stop. He climbs up the sofa goes down the sofa, he climbs up the chair, climbs down the chair. He scoots (unbalanced) across the room. And I'm loving it! It's been awhile since I've seen him do that. And maybe maybe hubby is right. Maybe I should stop all the supplements and just give him a break. Give him a break and see. See the real Tuti.

Today, ask me today if I'm happy, I will tell you, oh my god I'm floating! Floating on this white fluffy cloud. Ask me Why? Why Because today, today Tuti kissed me. Today for the first time in his entire 3 years When I told him Tuti kiss mama, he took my cheeks between his tiny hands pulled my face closer to his mouth and kissed me. I couldn't believe it. So like any mother of a special needs child who doubts herself I asked him over and over and over. And every time, every single time, he took my cheeks between his tiny hands, pulled my face closer to his mouth and kissed me. Kissed me and smiled. And only today only today did I feel truly feel my sweet little Tuti loving me. I mean I knew he loved me but it's only today only today I felt it. Felt it in my heart. Felt it in my soul. I felt it. Felt it in his kiss. His Pure Tiny Loving Kiss...

Wednesday, December 5, 2012

Crazy Florida Drivers...

BAAAAAM! And I let out a scream. I stopped the car and I couldn't move. I was shaken. A million things came to my mind. Who is going to take Tuti? Who is going to pick batman up? Shall I call the police? Shall I call hubby's friend? Man my neck is killing me.

The guy comes to me and tells me to come out of the car. I tried but my knees were too weak. He looked scared. Very scared. "I am very very sorry" he said. " my car slid on the wet road" wet road? I thought to myself. What wet road? It's more like you were probably not looking where you were going Mr!!! The noise the hit made, made me think that the back of my car was gone. That's how loud it was. I finally managed to control my knees and go out of the car to assess the damage. I looked and shockingly there was nothing! Not a single thing! Not even a scratch! I looked at his car and his front Marlins plate was hanging but no damage.

Because I didn't really know the laws here if something like this happens, stupid me I asked the Mr. So what do we do now? Do we call the police? He immediately said no. No if there's no damage it's best not to. I sensed some fear in his voice and to be honest I was more worried about Tuti waiting for me than doing something about the crash. So we just left it at that. He asked Me if there's anything he can do, I said well you can drive me to my son's school! I was kidding ofcourse but my knees were still shaking and my neck was hurting. Thank god I was just a traffic light away.

When I relayed the events to my friend and the teachers they told me I should have called the police in any case because he can turn out to be mean and sue me instead! Plus if my neck hurts then that's another reason. But to be honest all I cared about at that moment was reaching the school and getting my Tuti. And this made me think. Think back again to the what ifs. What if something drastic happened and I needed hospitalisation? Who would take care of the boys? Who would call the school? Who would know if I'm gone? It's scary. Thank god Nanny M was with me. And thank thank god the boys weren't.

I almost wish hubby was here. I say almost because I know he needs to work. Not that we need the income right now because we are good for a few years but we need it for the future. The boys future. And hubby isn't getting any younger, so when the opportunity came he took it. And rightly so. But I can't stay like this forever. I can't take all the emotional downs alone. Plus, plus he really needs to see the progress Tuti is making.It's one thing I want him here for me and its a whole different thing wanting him here for his boys.

My neck is still hurting but hey I'm not dying. Life goes on. Goes on for now. But for next time, next time I know that I'm calling the police. Damage or no damage. Hopefully next time never happens but you never know. You never know with these drivers. Crazy Florida drivers...

Saturday, December 1, 2012

Their December Mama...

Aaaaah December. I like December. I like December alot. I never really did before but ever since I moved here I started to appreciate it. Appreciate the happy vibes all around. December reminds me of my mom. ALOT! Even though as Muslims we don't celebrate Christmas in the same manner that our Christian friends do like going to church etc but in our household my father always made it a point that we either go out to lunch as a whole family or visit our friends that do celebrate it.

When much younger we used to go to my uncles' houses and celebrate since they are married to English women and all my cousins are British :) it was fun. Fun times. My mom on the other hand would fill the house with red Anthurium plants and poinsettias and would change the table linens to Christmassy ones. It set a very nice warm feel to the place. Pity I never appreciated it then. But now, now I do.

Last year an acquaintance of hubby was leaving the country and he brought us his Christmas tree. Surprisingly I loved it. The boys loved it. Well batman did. And so this year we made it a point that we bring it out again and let batman help with the decorations. He was just over the moon. In my neighbourhood not many people are into anything. There's maybe 2 or 3 houses that put an effort in decorating their front yard with all the fun stuff. And now that batman is learning about all the different occasions in school he looked at me one day and said "mama mama look, Christmas decoration. Batman also want. Please mama, do Christmas decoration outside"

And so mama did :) I went into a shopping frenzy. Ummm that was way before they got sick. That was during my "red" state of mind lol And we decorated our house. I loved it. He loved it and Tuti well Tuti just looked at it and didn't really give a hoot :( but I'm hoping, im hoping that one day he will. He did go to the Christmas tree and attempt to touch it though. He was curious. And that's, that's a start.

Yeah I like December. It sets this warm fuzzy feeling inside of me. It reminds me of the good times. The happy times. It reminds me of my parents and their great joyous spirits. It reminds me of the vibrant red poinsettias in my childhood home and the sweet smell of the cinnamon candles. These are MY memories and I'm hoping, I'm hoping that I will be able to give my own children that same fuzzy feeling when they sit one day with THEIR children and remember. Remember the fun times they had. The fun times they had in December. The fun times they had with their mama. Their December Mama...

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