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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

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...

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