Thursday, May 13, 2010

Goodbye for Now...Kinda

Please join me here:

After much thought and soul searching, I've decided to merge my two blogs into one. I started this blog with the intention and hope that I might raise some awareness about Down syndrome and also connect with the amazing community of mommies who are out there in the blogosphere. I hope that instead of having two fairly neglected blogs I might just be able to pull of one that is pretty decent.

There are several reasons for this decision, the first being first and foremost about time constraints. This fall, I plan on returning back to school to obtain my masters in nursing with the hope of someday becoming a family nurse practitioner. It's already quite difficult to find the time to post with my very busy family life and work.

I'm thinking I might change the name of Muslim Mama (found here) to "A Beautiful Life". I gave this blog it's name because I truly do feel that Yusef's life is a beautiful one, one that has every right to exist, one that is perfect, and one whose story deserves to be told.  That absolutely hasn't changed.

So please, please, please come join me there. I know I'll continue to follow all of you amazing moms and beautiful children out there.

So do you all got that URL yet? Here it is again, in case you missed it

Sunday, May 2, 2010

Thick Skin

Words can hurt, they can pierce your heart and bring tears to your eyes. Once they are said, they can never be undone, they travel into space having passed over the one they were to leave behind, broken.

I sometimes wish this blog were anonymous. I could post all my true feelings and no one would ever be the wiser to my true identity. Someone has hurt me deeply with their words. A phrase said in passing, not a second thought given to anyone but me, but I was left there stunned. The meanness of these words, the utter disregard for all people who were born different, intellectually challenged, special needs, whatever phrase you may choose, but oh, not that one. Not that one.

It was not said by a mean person. It was not meant in regards to my son. But they are there, those words, spit out into the world and I don't believe I can ever see this person the same.

How did I get here? How did I become the champion of all people like my son, those who society has cast aside and willingly disparages with its words? How far will it go? Will I lose people I hold close in this world over these words?

Will I ever be able to cast off these words and toss them aside? Do I want to? I don't know right now. I can never go back to the world I used to know.

Wednesday, April 21, 2010

MRI and I'm Exhausted

Yusef had his sedated MRI of the brain today. This is to make sure that there is no structural abnormality causing the seizures. I was quite nervous about it the night before. Frankly, I'm terrified they may find something there.. Something terrible, something we won't be able to fix..

I've been through numerous rounds of sedation with Zainah, including a couple MRI's. So I knew what to expect--A lot of waiting around and a cranky kid. I wasn't however prepared for the way things went today.

It was nothing out of the ordinary. The day started out getting checked in and to our room. The nurses came in (they know us as the kids in our family are regulars) asked all their questions, then the doctors came in and asked all their questions and after two and half hours of this the real fun began.

First Yusef was pretty sure he was starving to death. This is normal and expected as he wasn't allowed to eat anything since midnight. So he fussed and fussed and finally wore himself out and fell asleep. After a nice, peaceful time of it, the nurses came in to start his IV. I knew this was going to be difficult as we've done numerous blood draws and even the well seasoned phlebotomists end up having to do finger pokes.

So nurse after nurse attempted to place an IV in my screaming boy.  After numerous sticks and fishing around finally the IV was placed. Yusef cried like I had never seen him. He was so upset, heartbroken and bewildered. He cried until he had no fight left in him and just lay there head buried in my breast whimpering. I admit, I shed a few tears with him. I let my mind wander at what his future would hold. How many more mornings would we spend like this? My sweet boy. My love. I am your mother and yet I'm powerless to stop this.

The Offending Device

After that, I pretty much went into auto mode. I remember going down to the MRI area and sitting there drained as the machine whirred and drummed out it's unnatural mechanical rhythm. You must remember, this hospital is where I work, and I know all the help there, know the area, and have been in that same room countless times as a nurse. Still, I couldn't of been more removed from it. For the first time in a long while, I saw things through the patients and families eyes--modern medicine, a miracle, yet horrendous and utterly unnatural.

Finally it was over and we were back in our room to sleep off the pentobarbital. A long nap for both of us was in due order.

Sunday, April 18, 2010

Yusef's Eyes

With all my babies, there was always some part of them that I was especially in love with. With Nathan, it was his elbows. He had the cutest little elbows, I can't explain it, but I just adored those elbows.

I especially love Yusef's eyes. There dark, liquid brown, almost black. They're large and expressive, framed by delicate lashes and brows that perk up when something interests him.

Yesterday I went for my daily torture workout. The kids love going to the little day care center there and even though I'm not a big fan of torture, I enjoy it as well--a brief reprieve for the kids. Afterwards, in the car Zainah piped up with a question.

"Mama, does Yusef have Chinese eyes?"
Me: "Who said that?"
"That teacher lady".

I knew she was talking about the one of the girls that supervise the day care center. I prodded her a little more, but she then started rambling on about one of the little boys and how he dared to take her blue crayon during coloring time. It's apparently fairly difficult to get any accurate information out of a five year old mind.

I realize it was probably an innocent albeit ignorant obsevation that was made. I have to question the wisdom of saying something racially objectionable and in front of my daughter nonetheless.

I don't know. It bothered me. It makes me wonder if this is the beginning. The beginning of the comments and stares that I've so far been able to shield myself and my children from.

I also have to wonder what else was said...or thought...

Friday, April 9, 2010

Out With The Old, In With the New

We finally saw the new peds neurologist for our second opinion and I have to say I'm quite impressed. He want to totally stop the Keppra and valpoic acid. He never uses valproic acid on kids less than 2 due to possible liver damage and he doesn't feel that Keppra is effective for IS (which I knew!) and doesn't see the point in using it. He's also upping the dose of his Topamax. Turns out the dose we're on is way too low, like and eighth of what Yusef should be taking to be therapeutic.

We're also going to be doing an MRI soon just to make sure we're not missing something. It's always been assumed that the IS is due to DS since it's a huge risk factor, but the imaging is just to make sure we're not missing some type of structural abnormality of the brain.

He also wants me to call him weekly with updates. I love this! A doctor who wants to be bothered!

He just seems so much more up to date and knowledgeable. So it looks like we'll be turning our care over to him from this moment on. I'm so hopeful and I'm sure we're making the right decision.

Tonight Yusef also attended his first circus! Our EI organization gave us free tickets. Somaya was terrified the first good hour of the show--literally screaming "wanna go bye bye" right up until the intermission. Our ever skeptical girl soon warmed and was dancing and clapping by the end. The show was just so so, but we were all mutually impressed by the finale consisting of flaming motorcycles whirring around in a little circular cage type thingy. Fire and torque always rock I guess, no matter who you are.

You can tell Yusef was real impressed. I swear that kid can sleep through anything!

Wednesday, March 31, 2010

Punched in The Gut

So it happened. Someone, a mere aquaintance, was apparently speculating at why I didn't have an abortion when I found out Yusef had Down syndrome. The wife of one of my husband's friends, a doctor of course, and supposedly a person of faith and a Muslim (not that that really matters).

Even though this was relayed by my husband from his friend and was a casual conversation that occured in passing, it hurts. It angers me. It's heresay, since I didn't actually hear it out of her mouth, but still I know in my heart of hearts that those words were said.

I'll never understand the mentality that my child, a child with Down syndrome, who is perfect and sweet and funny and bright, would be better off dead.

He's not a mere thought in the memory of my womb, an enigma. He's real. His heart beats and my own hearts burns with a fierce love for this little boy.

I love every inch of him. His big brown teddy bear eyes and his pink tongue that peeks out between his little heart shaped mouth; his thick wavy brown hair that always seems to be in a perpetual state of "bed head"; his pudgy little arms and fat fingers that love to grab my glasses and hair and earrings. I love his little shy smile that appears at the sight of my face or the sound of my voice.

More than anything I love him and I love that he's here with me to share this time that is my life. Alhumdullilahi rabil alamin.

That is why. That is why I gave him life.

Monday, March 22, 2010

Good Morning Sunshine

Very few things can make Mama smile first thing in the morning...

Before I've chugged down at least half a pot of coffee, read the blogs and watched half an hour of CNN...

But this can...