Goodbye for Now...Kinda

Please join me here: http://muslimmamatheblog.blogspot.com

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 http://muslimmamatheblog.blogspot.com

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.

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.

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...

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!

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.

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...

We Have a Plan

We've switched Yusef's meds now. We're weaning off the Zonegram and have switched to valproic acid. The plan is to do another round of ACTH if the valproic acid doesn't reduce his seizures.

I have no problem with doing another round of ACTH. Yes there are side effects which include one cranky baby for six weeks. The ACTH helped Yusef so much the first time but now the seizure have slowly creeped into daily life again. The hope is the second time they will stop them completely. Obliterate them. Buh Bye.

So far the valproic acid has reduced them, but they're still around. Unless there's some miraculous turn of events in the next week and a half (I'm supposed to check in with the PA after this time), we'll see just a reduction of the seizures. They'll still be there. Lurking around in my little guy's brain. I want them gone and plan on being extremely firm about doing the ACTH again when we check back in.

If we do go with the ACTH and that doesn't work the second time, then we'll start the ketogenic diet. I've like the idea of this diet for quite some time, but it does require a 5 day hospital stay in it's start, and is not nutritionally complete which means drawing labs regularly to check electrolytes. It also is usually tried for 2-3 months before it is deemed either a success or a failure. So in other words, if it doesn't work then we'll be looking at that time wasted when we could have been doing the ACTH which has helped in the past.

So I'll stick with what I know will work at this point.

We also have an appointment next week with another neurologist to get a second opinion. If I really like this guy, I might take our care there since I haven't been that happy with the way our care has progressed thus far. I know Dr.'s aren't generally keen on stepping on each other's feet and "stealing" away patients from one another, so we'll see what he says.

I have to do what's best for Yusef.

In other health care news, Zainah had a follow up chest xray for the "spots" on her lung. It looked clear, but to be safe we're doing another CT tomorrow. So throw up a prayer to Allah, God, Jesus, Krishna, or the diety of your choice, or just send some positive thoughts our way that tomorrow goes well.

Calling All You Armchair Acitivists

I'm not exactly what you would call an activist when it comes to the cause of DS. I'm not particularly involved in any of the national groups that advocate for our kids. This little blog is the primary way I like to get the word out on how much my son is loved and adored, and how "normal" our lives are...full of joy and worry and beauty and tears. A Beautiful Life, hence the name I gave to this blog.

However, sometimes one has to step up and do what's right.

The NDSC recently had a photo contest in which many parents posted their sweet child's pictures in an attempt to show how similar individuals with DS are to their typical peers.

Well some sick fuck decided it would be funny to post these images on a forum and use them in demeaning and sometimes pornographic ways. I've rarely seen such cruelty and utter disregard for humanity in action.

Earlier today when it was realized that these photos were being used in an inappropriate manner the content was taken down when the online DS community became abuzz with what was going on and legal avenues were being explored.

Here is Christie's post on the subject. Her sweet boy was one of those posted on this twisted site. She has some links to the mods of this forum. Kindly visit her blog and take a minute to send out some emails and support her as she seeks legal counsel for misappropriation.

The original posters on the NSDC site have also been taken down. I'm not sure how I feel about this. Any images we post on the internet can be used for unsavory and just plain sick purposes. I'm a Muslim woman in a headscarf--a figure that has often been abused by hate sites and pornographic sites alike. I have a child with DS, which apparently makes him a target for cruelty and hate as well. However, that doesn't mean I will back down and hide. EVER. We shouldn't have to hide out of fear.

We're here and we deserve and demand respect. We won't hide. And we're not going to let you bully us into submission.

He's One Now But I Don't Feel Like Celebrating

Yusef turned one this past week. It’s been an extremely emotional time for me and I admit I’ve been depressed to the point of tears at times. I sometimes feel that I only post negative things on this blog, a fact that I hate. I also want to be an advocate for individuals with Down syndrome and I never want anyone visiting this blog to get the wrong idea. I don’t want to propogate the stereotype of children with DS suffering or their families being paralyzed with grief and medical issues. At the same time, I can’t just write out a lie.

This year has been difficult. However, much of the difficulties have had nothing to do with Ds, but rather his debilitating form of epilepsy called infantile spasms that have wreaked havoc on my every waking hour for the last eight months.
Children with Down syndrome no more likely to suffer from seizures than their typical peers. However, for those children that do have a seizure disorder, the likelihood of infantile spams being the type of epilepic disorder is much higher in children with DS than in the general population. Indeed, one of the risk factors for infantile spasms is chromosomal abnormalities.

The information out there on the internet regarding infantile spasms is incredibly scary and depressing. They are very difficult seizures to control and many of the articles will say that the prognosis is poor with this type of epilepsy. This means that most cases are intractable to current medicines and treatments and most children will have permanent developmental and cognitive delays. Of course, then I have to factor in Down syndrome, and well, I just feel bleak about my child's future and level of functioning he will be able to obtain.

While we have seen a reduction in seizure activity after our course of ACTH, and an increase in development, my Yusef has not had anywhere close to a total halt to these seizures. It’s very common to see him have at least a couple “spasms” i.e. seizures every day. Usually with no warning. If he happens to be sitting up in his excersaucer, he’ll have what is called a head drop meaning he loses all control of the muscles in his head and trunk and he’ll literally do a face plant on top of his tray and any toys that might be sitting there. This is, to say the least, traumatic to everyone involved.

My son is extremely delayed at this point. At one year old I see other babies with DS sitting, creeping, some even crawling, starting to talk or sign. Yusef is nowhere near sitting. He still doesn’t seem to socialize and smile as much as I would like to see. He’s only recently started rolling around consistently. I know people will say he’ll reach his milestones in his own time, but this is ridiculous. And so now I’m angry.

I’m angry at the neurologist for not being nearly aggressive enough with this. He just seems to blow everything off and want to continue the current treatment plan that we’re on which is not working! He is taking a wait and see approach and this is my child’s life, his future we’re talking about.

So my husband and I have talked about taking him to somewhere out of community to get another opinion, perhaps to Kansas City. As it turns out there is a second, brand new, pediatric neurologist in our community now! Our primary care pedi is in the process of setting up an appointment with him now and I should hear from them tomorrow.

There is still some hope. There are a couple different options that are promising. One is a med called Vigabatrin and the other is the ketogenic diet. Neither of which has our neurologist even mentioned. Not once. It took 5 months for him to even be on board with the ACTH which is a first line treatment, the gold standard really. I am done with this guy.

I’m pissed at myself for letting things go on for this long. I just kept thinking it would get better. The Zonegram helped which gave me hope. The ACTH helped quite a bit more which gave me more hope. But neither are enough. I want these seizures gone. Completely. And if I can’t have that, then at least I want the peace of mind in knowing that I did absolutely everything possible and that it is simply out of my hands.

My Thoughts About Today

This morning I made a post on my other blog about the "R" word. As I'm sure most of the bloggers within the Down syndrome community know today is the day the Special Olympics have set aside to raise awareness about that word.

To me the use of the word is more than just semantics or popular culture. It's an attitude our society has about people with cognitive and other disabilities. It's a reality that parents and individuals effected by a loved on with special needs have to face on a daily basis: Our children and loved one's are marginalized and laughed at by the society we live in.

This fact hurts me beyond all else when I look at my son. When I think of his extra chromosome, the one that resides in every cell in his body, the one that gives him his almond shaped wide set eyes and his short little legs propped up with the cutest little feet, society is what hurts me. Not that chromosome. It's the judgement and exclusion from this society that my child was born into.

Frankly, I don't know if we'll ever see attitudes change, at least in my or my son's lifetime. I guess all I can do is strive to change the attitudes of the people around me, the few souls that I collide with in my own little microcosm. I can only strive to give my child the best, expect great things from him, demand respect and inclusion from the people around him, try to change hearts one at a time.

That's the least I can do for you Yusef. I know you will do the same.

Worried

We just got back from a little getaway up to Kansas City. The hubs works so much and runs two of his own businesses so it's extremely rare that he can get away for any meaningful vacation time. Actually, it's a point of contention between us, but I won't get into that here.

Anyway, we all had a great time and the kids thought the motel room which was really just a really crummy, run down Super 8 was the greatest thing ever. Yes, we really need to get them out more.

I also got a new digital camera because I was wondering why my pics always come out so blurry and then I realized the old one literally only has 3 mega pixels so I decided it was high time for an upgrade. I bought one with 10 mega pixels in excellent used condition and got quite a deal. It also has a decent amount of zoom power on it which I really wanted so I can catch the kids in the act without them realizing I have the camera out because then they usually get shy or try to pose for the camera and I want to catch them in their natural cuteness. The only thing is it didn't come with the USB cable and come to find out it is a 2.o cable which is different than the ones I have. I actually had no idea there was differend types of USB's. So now I have to buy that. And then, I promise, promise, promise I will post some pics.

So anyway, the last 3 weeks have been stressful to say the least. First we were all sick. Then Yusef was in the hospital overnight with RSV. He's doing great now but then I got sick and wanted felt like I was going to die and turned out to be strep throat which hubby promptly got. Now see, this is why husband and wives shouldn't be kissing! Anyway, a course of antibiotics and prednisone later, I actually feel human again. Thankfully, the kids somehow managed not to get it.

In the midst of all this, Zainah had also been sick and had this nasty cough that just would not go away. You may or may not know Zainah is a cancer survivor and is in remission so to speak from a tumor that was found on her kidney. She had the entire kidney removed and went through chemo. So anyway, she had one of her routine CT scans and the next day the oncologist called me and said something funny showed up on one of her lungs and the radiologist felt it was either a mass or a pneumonia. I didn't think to ask why the hell couldn't the radiologist tell the difference. This was at the exact time hubby had her at the doctor's office for the cough. So now she's on antibiotics for what we presume is a pneumonia but the seeds of fear and panic have sprouted.

Cancer is the devil. It is like a dark shadow that follows you even to your dreams and never goes away. It's the bogeyman that can pop up at any time. I hate it. Leukemia is one of my worst fears for Yusef. We all know that in life there are no guarantees and horrible things can happen. We put it out of our minds so we can function and stay sane. But when the fear rubs up against you, into your pores, clinging, it's hard. Real hard.

People sometimes tell me I'm so strong, they just don't know how I do it and I always chuckle; Because really, does a Mom have any other choice. I'd do anything for my children. Anything. For now I just hold them tight, soak in their smell, revel in the sounds of their laughter, bask in the warmth of their little bodies...feel. Just feel them. And love them.

Back to ourselves

Just a quick note and update. We've had our follow up EEG and it is still showing some seizure activity, but it looks "a hundred times better". We've not been able to actually see any of the seizures since the ACTH. While things still aren't perfect (whatever that is), I'm thrilled that I've got my little man back. He seems to have awoken from a daze and is interacting with all of us. We're having so much fun!

Back to the neurologist in 2 months for a follow up.

I'll post some more pictures in the near future, I promise. I've been a horribly lazy blogger lately.