A Beautiful Life

Goodbye for Now...Kinda

2010-05-13T16:22:00.000-07:00

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

2010-05-02T22:19:00.000-07:00

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

2010-04-21T22:07:00.000-07:00

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

2010-04-18T20:03:00.000-07:00

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

2010-04-09T22:39:00.000-07:00

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

2010-03-31T12:56:00.000-07:00

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

2010-03-22T12:05:00.000-07:00

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

2010-03-18T09:59:00.000-07:00

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

2010-03-12T19:15:00.000-08:00

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

2010-03-04T22:41:00.000-08:00

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

2010-03-03T11:17:00.000-08:00

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

2010-02-23T22:44:00.001-08:00

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

2010-02-01T07:56:00.000-08:00

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.

Finishing up the ACTH

2009-12-29T21:59:00.001-08:00

We're winding down on the ACTH treatments now. I'm giving the injections every other day this week and Thursday is his last shot!

For much of the course, we've seen really no improvement. In fact, for much of the last 6 weeks, Yusef's seizures and symptoms have actually been worse.

However, this week he's suddenly come out of his fog again and is smiling, cooiing and laughing! Yes, for the first time in his life I've heard his laugh! I can't tell you how happy that makes me; How my heart soars with pride, my own face reflecting his joy.

Right now, I'm cautiously optimistic...

Starting ACTH

2009-12-06T19:07:00.000-08:00

It's been a while since I've updated this blog and alot has happened.

The meds that Yusef was on for the infantile spasms just simply aren't working. His last two EEG's continued to show frequent seizure activity. Developmentally we are at a total standstill which is the most frustrating thing that has gone on. I'd say my 10 month old is still at a 3 month level, even regressing since this all began 6 months ago.

So two and a half weeks ago, we started the ACTH treatments. ACTH or adrenocorticotropic hormone is a treatment which is sometimes effectivce with IS for reasons not understood by medical science. The cost of the six week treatment is well over 100,000 dollars. No that is not a typo. It's craaazy. Apparently, Questor is the only drug company that manufactures it, and since it used to treat a rare condition, they can charge whatever they want! Well yay, for them, and thank God, thank God, we have decent prescription coverage.

These two vials costs $93,000, and there's more to come

It's quite stressfull to even have these vials in my house. I'm deathly afraid there's going to be a fire or something. Of course, even more stressfull is jabbing my sweet boy in the leg with a needle every morning.

The treatment is a six week course. We started at the highest dose 3 weeks ago, and are tapering down each week. The first week Yusef did great. He immediately became more alert and began cooing and gooing like never before. He had a light in his eye. He looked us in the face and truly studied us for what seemed like the first time. Then last week the insidious seizures started again, and he again became like a zombie, spaced out, seemingly oblivious to the world. Since then, the seizures have come and gone. One day, I'll see seizures, and the next he'll be back again, alert. He still hasn't smiled for what has seems like months. He's still never laughed.

ACTH is still considered the gold standard in treating IS, but there are still some treatment options that I'm quite interested in, namely the ketogenic diet which has shown to be as effective in some studies. There is also a drug called vigabatrin. I'm also seriously thinking about taking him to Children's Mercy in KC to get a second opinion as I fell like this Dr. has been dragging his feet with this. This has gone on now for 5 months! Why did we drag our feet so long before starting the ACTH and why did he never mention this ketogenic diet? I'm still learning about this, but I know that it will be the next step if this treatment doesn't work. I feel in my heart, it's not going to. And now I feel trapped since we're right in the middle of the ACTH and I feel guilty because I should have taken him for another opinion sooner when we weren't seeing results earlier in this journey. Then again, this could all be the angry rantings of a desperate mother.

This has been a heartwrenching experience and it isn't over yet. In some ways it feels like getting the diagnosis all over again, the same fears and grief, and in between glimmers of hope.

Make a Little Boy's Last Christmas Special

2009-11-07T21:10:00.000-08:00

This message came from a fellow blogger Salma whose blog can be found here.
Please take the time to make a little boy's day!

I just learned about a 5 year old boy named Noah Biorkman who is in the last stages of a 2 year battle with Neuroblastoma Cancer. His family is celebrating Christmas next week and Noahs request is to get lots of Christmas cards.

Please let's make this little warrior's wish come true.

Send cards to:

Noah Biorkman

1141 Fountain View Circle

South Lyon, Mi 48178

Lets see how many cards
we can get together for this brave little boy.

Thank You and God Bless.

Please also consider posting this very urgent message to your blogs.

2009-10-28T22:02:00.000-07:00

I just wanted to share this site A Little Extra by Connie Wenk. She takes the most extraordinary pictures of children with DS. It's such a gift to have these children in our lives and she says it so beautifully in her pictures.

Here's one:

We've Got Ourselves a Big Eater

2009-10-28T21:30:00.000-07:00

I started feeding Yusef solid's a couple monthes back. I wanted to get him into it slowly due to his seizures and just generally being in a fog all the time. I have to admit part of it was sheer laziness on my part as feeding babies has got to be one of the most monotomous tasks I can think of. I'm always so glad when they can start feeding themselves.

But a couple weeks back I realized that this is the one thing I can control and that we can work on. To my delight, it didn't take any work at all as it seems he's just a natural eater. In fact he loves to eat anything and everything. Three meals a day, he sits down with us and indulges in rice cereal and prunes or oatmeal and peaches. So here we are, officially in the club of big boy eaters!

Yusef's First Camping Trip

2009-10-15T23:17:00.000-07:00

My Dad's been in town all week, and as is our usual fall tradition, we went camping out on the lake. Before I had children, we would rough it in a tent and sleeping bag, etc, but nowadays we rent a cabin. It's complete with all the modern ammenities and creature comforts which makes camping with young children much more enjoyable and certainly easier.

The drive out is a beautiful one. I've often heard people say that Kansas is so boring and flat, but I find it beautiful. Sure, it doesn't have the majesty of the Rocky's or the wonders of Yosemite, but it does have a very real and subtle beauty. My favorite part of my state is the flint hills--a unique place that is the home to the nations largest remaining tract of tallgrass prairie. I'm a prairie girl alright. I just love it. These pics don't do it justice by any means.

Apparently deer really like the prairie as well because we hit one on the way in! Thank God my dad was driving and didn't panic and no one got hurt. Well, no humans got hurt, the dear deer didn't fair as well. The front left hand side of the van sustained considerable damage, but amazingly after filing a police report for insurance purposes, we managed to drive out of there and onto the lake!
The van

Actual deer hair in the rim of the tire. I cannot believe it didn't blow.

It was a cold and dreary day, but as soon as we got to camp we made a campfire of course!

Our cabin and the view off the front porch

We went to the playground and let the kids run off some energy.

Here's Yusef with Mommy all bundled up and cuddling in his sling.

Later, it was time for some serious hot dog roasting

And after dark, s'more makin' of course. I like my marshmallows nice and dark, like they literally have to catch on fire to be considered done!

The kids having a blast with their glow sticks

I would have loved to have been able to stay more than just one night, but we had to get back to reality, school, and life. So that's it. Our annual family camping trip, and Yusef's first, with many more to come, inshallah.

First the Good News

2009-10-09T01:44:00.000-07:00

The Good News:
Somaya is doing much better. We spent 6 hours in the ER Friday night getting IV antibiotics. They also gave her some morphine because she was in so much pain and Tylenol for the fever. The doctor said she could be admitted to give her another dose of antibiotics in 24 hours or we could go home with our current oral antibiotics and some Lortab. I didn't want to spend any more time in the hospital so I opted for going home and thankfully she's doing fine now--back to her old feisty self.

The Bad News:
Yusef's EEG still shows frequent seizure activity. We saw the neurologist on Monday and he thinks it's definitely a good sign that we're not seeing clinical seizures so he wants to give it 6 more weeks and redo the EEG. If at this time, Yusef is still showing seizure activity, we'll go ahead with the ACTH treatments. This also explains why we're not seeing any progression in his milestones and the limited interaction.

ACTH (adrenocorticotropic hormone) is generally a very effective treatment for infantile spasms. However, it comes with a whole host of scary side effects. Everything from irritability, to gastrointestinal bleeding, to sepsis.

The Dr. said these would be given weekly, and that I could do these at home. He knows I'm a nurse and I have worked with him before in the professional setting. I'm assuming Yusef will need a PICC line, which again, I've cared for many, many times.

Kudos to all you Mom's out there who've had to care for your little ones at home with NO medical training. I remember when Zainah had her Hickman and later a PICC line, how stressful it was caring for them, even with lots and lots of experience. I can't even imagine how intimidating it would be for someone learning everything for the first time.

Part of me just wants to get this over with and go ahead with the treatments. I want to see my my boy advancing and working on all his milestones again. Sigh. Patience is a virtue I guess. . .

Oh yeah, and now Zainah is sick with stomach cramps, vomiting, and fevers. Blah. I mean, can we catch a break with these kids. Sometimes, you just gotta laugh so you don't cry.

Update on Yusef's Infantile Spasms

2009-10-02T15:55:00.000-07:00

It occured to me that I never really gave an update on Yusef's progress on his meds. I'm happy to say that the second med we started seems to have done the trick and he's been seizure free for the last several weeks. He's on Kepra 3 times a day and Zonegram twice a day.

I have noticed that he seems to be a tad more sleepy since this all started and he hasn't progressed at all developmentally. From what I've learned from other mom's this is to be expected and often happens with the IS. In fact, I think it's safe to say, he's even regressed on a lot of his gross motor milestones. He won't roll over like he was before, and rarely ever smiles. He seems to avoid social contact and sometimes refuses to even look at us and interacts rarely. Our therapist seems to think it's a sensory thing caused from the seizures and meds. However, just the other night I was thrilled when I got several sweet smiles out of him!

We've got an appointment Monday with the neurologist and a follow-up EEG--I'll definitely bounce it off of him and see what he says.

Hopefully we'll be actually be able to make it to the appointment since big sis Somaya is fairly ill and might have to be admitted into the hospital for IV anitbiotics. She's suffering from a UTI that doesn't seem to be responding to the meds. Her pedi thinks there is a good possibility it's turned into a kidney infection in which case she'll have to be admitted. We do have vesicoureteral reflux in the females in our family. It's essentially what happens when the urine backs back up from the bladder up the ureter and into the kidney. It can cause chronic infections. Zainah and I both had it. Somaya has never been screened for it since she's never had a UTI before. Right now we're just waiting to see if her fever returns tonight and if it does we're to take her to the ER. Her last dose of ibuprofen was at 2:00 and it's now 6:30 so we'll see what happens here in the next few hours.

Oh yeah, our buddy walk is tomorrow and unless Somaya makes some type of miraculous recovery, I doubt we'll be able to go. I'm really bummed about this. I was so excited. It seems as if every time our local DS chapter has some big event, one of the kids is sick or there's something else going on. Sigh. I dunno, maybe Somaya will be okay. That's what I'm praying for right now--and my sanity--it's been a rough couple of days...

First Eid

2009-09-23T15:10:00.000-07:00

This past Sunday we celebrated the Eid al Fitr. Muslims have two main holidays, the Eid al Fitr and the Eid al Adha. The Eid al Fitr follows the holy month of Ramadan, and the Eid al Aldha follows the haj, or t he pilgramage to Mecca. On these holidays, the entire community gets together in the morning for a prayer which is followed by lots of feasting, gathering, and gift giving. It's an especially fun day for children, not unlike Christmas for my Christian brothers and sisters.

This was Yusef's first Eid! He didn't seem to have an opinion of it one way or another, and spent a great deal of the day sleeping. Oh, well someday, he'll look forward to it with glee and excitement like my other kids.

Yusef on Eid morning, getting ready to leave for the prayer

Yusef and Mama

Family picture

Eid Mubarek everyone!

We're Doin Our First Buddy Walk!

2009-09-11T20:23:00.001-07:00

I finally got our team registered today! If anyone is interested in donating here is our team page. I'm so excited!

https://www.syssolutions.com/WichitaBuddyWalk/main/Team.aspx?FundraiserId=03ce4553-ed4f-4877-a219-bb45b999f403

For Those With a Prenatal Diagnosis of Down Sydrome

2009-09-11T07:00:00.000-07:00

I have more than once noticed that people have made their way to my blogs while googling termination and Down syndrome. If you have found your way to my blog and find yourself with a new and scary diagnosis, I want you to know that there are thousands of women that have been in the same place you find yourself in now.

All of us in one way or another found out our child has Down syndrome, rather it be a prenatal diagnosis or after birth. We all understand the feelings of grief, the fear; And on the other side, we all share the intense feelings of love we have for our children.

Please give your chld a chance at life.

You will love this child with an absolutly pure and overwhelming conviction, one that you might not ever have imagined. This child will teach you more about compassion and humanity than you ever thought possible. If you are a religious person, this child will increase your faith in God and his perfect plan for you.

If you find yourself here in your darkest hours, please take some time to link to the blogs on my sidebars. There you will find families and children living normal lives, doing normal things. You will also find extraordinary people doing extraordinary things.

You might find some little ones with health problems. There you will find an unwavering and loyal support group. You will more often find kids perfectly healthy doing all the things that children do.

You will find children with Down syndrome lighting up the world around them.

So if you find yourself here, and you think that you cannot bear it, you can. Be strong, come to us who are on the other side. We'll support you when you need it.

Give your child a chance.

This child is a miracle. With time you will be able to see through your tears and be honored to witness the miracle that I know.

Well the Meds Aren't Exactly Working

2009-08-28T17:13:00.000-07:00

Well we're now on the maximum dose of Keppra and Yusef is still having 0-2 seizures a day. I've been in constant communication with the Dr.'s office and he wants us to come in sooner than was originally planned. So Tuesday we'll go in and discuss what he wants us to do.

I'm a little ticked off at the Dr., frankly. When I was there last week, we dicussed the treatment plan and what steps we would take if this med didn't work. He said we could add in another med, I think it was Zonegram. I fully expected him to call out a script for this, but instead he didn't want to make changes in the medication, and just wants to see us in his office. I guess I'll find out more on Tuesday.

I'm nervous because I don't know what he's going to say that's any different than what we discussed previously.

I've posted a video of a baby having infantile spasms if anyone's interested. It's not my Yusef, sorry I can't figure out how to post my video. I can't get my video to save on my pc so I can publish it. If anyone has any ideas or advice, please post.

Sometimes infantile spasms are misdiagnosed or overlooked, so if you have any suspicions about your little one you should call your pediatrician right away. It's also a good idea to video tape any unusual symptoms of behavior if you can, so your pediatrician will know exactly what's going on.

A Day in the Life

2009-08-17T22:50:00.001-07:00

From my other blog...

Today was Nathan's first day of second grade! He goes to a magnet school whose focus is on environmental education. They get to do all kinds of cool outdoor projects and even have camping trips.
Here's him in the car as we were leaving:

I forgot to take the camera in with us as we got him settled in his classroom. Oh well, it would have just embarrass him anyway.

We had a nice downpour as I was driving back

Back to the house and the other little ones were up and ready for breakfast

Yusef had his as well. He's getting pretty good at holding his bottle!

Next is bath time

All cleaned up and ready to run our errand to Wally World for some supplies

This is how we roll

Back to the house for Dhuhr

I do a little decorating with some cheap stuff I bought at Walmart

Pleased with the results

Lunch and now time for a little cleaning

Gotta have my coffee and Mp3 player for this. I download free audiobooks from my local library's website. I'm currently listening to a garden variety serial killer suspense type thriller. It makes the chores so much more fun!

Picking Nathan up at the bus stop

Cookin' up some dinner for the family. I made BBQ chicken tostadas ala Weight Watchers from this recipe. It was really good and something different

Here's my plate. Yummy and not too calorically disastrous

This is the point in the evening where all hell breaks loose as usual. Cleaning up the dinner mess, squabbling cranky children, getting them ready for bed. The usual. Poor little Yusef had another seizure at this time as well. It's so stressful seeing this happen to your child.

Time for

I finally got them off to bed by 8:30 when a thunderstorm moves in and they all end up congregating in my bed. I love Kansas thunderstorms, but they don't go well with little ones. So I made myself some green tea with lemon and ginseng and enjoyed the storm

Finally got them off to bed and I'm curling up with my hero, Frederick Douglass.

Nighty Night all...

Alhumdu lillahi rabbi al Aalameen for blessing me with another day. Ameen.

Neurologists appointment and increasing meds

2009-08-16T10:28:00.000-07:00

We had our first visit with the neurologist Thursday. He seemed extremely knowledgable albeit a little quirky. I've actually worked with him before at the hospital, so I was prepared for his eccentricities. Little Yusef gave him a big ol grin when he was examining him, so looks like Yusef doesn't mind his personalilty one bit.

Unfortunately, Yusef is still having seizures, although fewer. We've gone up on the meds twice now, and he's still having about two episodes a day. We went up to 2 ml's yesterday, which is double his original dose. Yesterday he had two seizures, so far today, none. We'll see how today goes and if he has any seizures, I'm to call the doc tomorrow. If need be we will add another med to the regiment, and if that doesn't work we will start ACTH treatments. ACTH is a hormone and Yusef would have to be admitted to the hospital for these. It is a hormone naturally produced by the body and has alot of side effects. I'm praying that these other meds will do the trick and we won't have to go that route.

The good news is that Yusef will outgrow these types of seizures (infantile spasms). The Dr. thinks that we're looking at 6-12 months of treatments. In the meantime, it is imperative that we get control over them because they can be damaging to the brain.

I've also noticed that Yusef is so much more fussy since this has all began. After he has a seizure he literally screams bloody murder. It's absolutely heart wrenching and I feel so out of control and powerless.

EEG Results and Starting on Meds

2009-08-10T18:30:00.000-07:00

Thank to everyone for your kind comments and prayers! It really means alot to me.

And yes, to no surprise, the EEG showed seizure activity. To tell you truth, I'm mildly relieved, because I know sometimes EEG's will come up negative if the patient doesn't have a seizure at that time, even if they really do have an underlying seizure disorder. I was able to get the EEG done late Friday afternoon and the neurologists office called later that evening to call in a script. It was also nice to know the doc (we haven't actually met him yet, our actual consultation is Thursday) is on the ball and didn't blow us off until Monday.

So we're starting off with Kepra. I'm keeping my fingers crossed it does the trick and we're not having to constantly play with the meds to stop the seizures. I know this is a possibility though.

After I filled the script as I was driving home, I felt some tears come to my eyes. I just love my baby so so much and naturally I'm feeling quite a bit of apprehension.

He's been on the Kepra for 3 days now. It seems to be working! He had two seizures the first day we started it, but none since then. A couple of moms on the DS board at BabyCenter.com mentioned that the meds may make Yusef drowsy or not as active as usual and thereby slowing his development. I can say I've seen some very minute changes. He doesn't seem to smile and engage with me quite as much, although i can still manage to lure out a smile here and there. Apparently this is a common side effect of the meds and not much can be done about it. It's better than the flip side which is continued seizures which would inevitably lead to brain damage.

We're meeting with the neurologist on Thursday so I should know more about the plan and where we go from here. I'm assuming and have been told that he'll most likely want to do an MRI as well to see if there's been any scarring or any other anatomical issues going on.

I'll post more after our appointment on Thursday God willing.

Infantile Spasms and EI update

2009-08-06T18:21:00.000-07:00

First, the good news:

It looks like we'll continue to get our EI services. The organization that provides it now is filing Chapter 11, but will continue all homebased services, all praises to God.

Now, the bad news:

Last night I noticed my little one would tense up and throw his arms up very similar to a startle reflex. This happened in a very repetitive manner for a time lasting approx. 4 minutes. I knew right away this had to be some type of seizure activity. It happened again later in the night and I actually had the presence of mind to videotape part of the episode.

In the mean time I got out my handy dandy "Babies with DS" book and looked up the chapter on epilepsy. It said the most common type of seizure in babies with DS is called an infanile spasm. My husband and I felt our hearts sink as we looked at some videos out there on the internet of kids having infantile spasms and it looked exactly like those our baby had.

Obviously this morning I called my pedi first thing and after seeing the video and examaning him she also felt that was probably what is going on. We'll be getting an EEG, possibly an MRI and an appointment with a neurologist either tomorrow or Monday (prob. Monday).

He's had 3 more episodes over the course of the day (my pedi also knows about those). I feel like I'm on pens and needles waiting for another one to happen. He gets really grumpy and fussy afterwards also. Apparently this type of epilepsy can be quite damaging and sometimes hard to control. Fortunately, at least from what I've read, our kids tend to respond well to the treatments.

From what I was told the treatment for thses types of seizures are ACTH. I don't know much about this. I also think I read that they have to be admitted to the hospital for these treatments but I'm not sure.

Please keep us in your thoughts and prayers.

First Hair Cut and EI Madness

2009-08-01T13:40:00.001-07:00

At the tender age of 5 months I gave Yusef his first hair cut. I didn't get any before shots but as you can see from the previous post it was really quite shaggy. I wish I would have gotten a shot of the back. It was down past his shoulders!

Here's the aftermath. That's alot of hair!

And my new hansome little man.

In other news, it looks like there is a good possibility we are going to lose our EI services. The major organization that provides them here is going bankrupt. They serve about 2600 kids in this area. This just months after they opened a brand new multimillion dollar facility. I'm so upset and dissapointed with them right now.

They've realeased a couple of statements saying that they'll be restructuring and will do everything possible to coninue to help kids. Then just a couple of days later, they said they were going to close a couple of facilities, lay off 70 employees and focus on services for 3-5 year olds.

Needless to say, I'm not putting any faith in the hope that Yusef can continue his therapy with these guys. There are other organizations here but I don't know anything about them. I have the feeling they are all going to see a huge influx of people seeking services. I'm getting on the phone first thing Monday morning to try and figure out where we can get his therapies. Also, I'm going to contact our insurance to see if they'll cover anything if we have to go private. I'm stressin...

Yusef With His New Bumbo Seat

2009-07-24T23:43:00.000-07:00

I started sitting Yusef in our old walker that we have. As you can tell he likes it quite a bit...

(someone else had to sneak in the pic)

Reaching out for a toy:

The only problem is I have to stuff a bunch of blankets in around him to support him and put some pillows under his feet. I was mentioning this to his OT and she suggested we get a bumbo seat.
Well it just so happens we have one that my SIL gave us. I really didn't know what it was for at first; I thought it was just some kind of weird looking booster chair or something. I thought he still might be a little small for it, but it's shaped in a way that's really supportive.

Isn't that just the cutest thing. He get's to sit up among the other kids just like a big little man. Eventually, he sometimes kind of leans to the side and then I have to reposition him.

It really good excercise for him. I think it's good to further develop trunk and neck strength. He doesn't seem to tolerate it for more than 30 minutes or so. It's alot of work you know!
And on to other cuteness. Yusef played with his new baby friend Norah today.

Obviously, she wasn't too happy about having her pic taken, and he's wondering what all the commotion is about.

Ahh, all is copacetic again. Aren't they just too adorable? And can you believe how long Yusef's hair is? There's definitely a trip to the barber's in his near future!

Culture and Down Syndrome

2009-07-21T22:41:00.000-07:00

I originally posted this on my other blog here. If you want to check out the comments,there was some interesting discussion.

I never though I'd be a mother of a child with special needs. Now that I am in this place, though, I've taken it on as somewhat of a personal mission to educate people about Down syndrome in particular. Within the Down syndrome community it is generally thought that most Americans are very ignorant about Down syndrome and it is seen in a very negative light. Yes, this is true, and the most stunning example of the prevailing attitudes can be displayed in the atrocious termination rates of fetuses that have had a positive diagnosis (either by amnio or cvs). These rates are believed to be at about 90%. This haunts me. The reason most women give for having an abortion when they find their baby has Down syndrome is they don't want their child to suffer. I've heard that one over and over again. I don't believe it for one second. In truth , I believe that these parents fear the stigma of having a child who is different; a child with cognitive delays and a set of physical characteristics that are outside of the norm. Many might think raising a child with Down syndrome will just be too difficult and aren't willing to sacrifice any piece of their perfect life in order to raise an individual with DS (yes I am bitter). Unfortunately, the medical establishment has been known to encourage termination on expectant mothers. Most women at best will be given the diagnosis, some outdated information, and then sent off into the world with absolutely no support.

So yes, the average American isn't very educated about Down syndrome, but we do have many organizations here that work for the rights of individuals with disabilities. Parents with children of Down syndrome are very, very vocal about advocating for their kids well being. They're also extremely proud of their kids and will put anyone in their place who might make a disparaging or insensitive remark. Kids with DS start early intervention therapies as young as two weeks old to increase their potential. Many groups and brave individuals have fought the good fight to allow their children inclusion into the education system, right alongside the "typical" kids. Along with medical advancements to treat any underlying health issues, kids with DS can live up to their potential and exceed all expectations.

This brings me to the Muslim community. Since my husband is Arabic, this is (besides the American converts) is the ethnic group that I know the most. I've found that for the most part the Arabs I have run across know very little about DS and although no one is rude will sometimes say some very ignorant and insensitive things.

Caution: VENT ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Just this evening we had dinner with a very nice couple and we started to talk about our little Yusef. First off, alot of people from the Arab countries don't even know what DS is, at least by that name. They call individuals with DS "mongoli" or the English translation "mongoloid". This in itself is an extremely offensive and racist term to use, and isn't used in the US anymore because of those reasons. I've gotten used to that term and I can't really blame people for that if that's the term they know. To me it's just a reflection of how far behind their society is in thinking about this particular issue. So anyway, when my husband told them that Yusef was a "mongoli" the man got the most disgusted look on his face and stared at my son in disbelief.

Ok, I know he wasn't trying to be rude, but my protective motherly instincts went into hyper drive at that point.

The man : What causes this?

My husband: The women's age.

Me: Uh, no, that is not a cause, only a risk factor. The chance of having a baby with DS goes up with maternal age, but even a 20 year old can have a baby with DS. It's a random occurrence where a child receives an extra 21st chromosome during conception. blah blah blah...

Man: My mom had her last child at 43, she was fine.

Me: Stares at him

Man: Maybe it was something in your house.

Me: My head explodes and with what was left of my mouth I say: This is Allah's will. We should say alhumdullilah (All Praise is for God).

Seriously though, I've got a whole variety of responses. Some people imply that maybe Allah will cure him. Well, first of all there is no medical cure for DS. You can't just remove an extra chromosome that resides in every cell in his body. That would be like removing the gene that says you have blue eyes, or are a male or a female, or whatever. There has never been in the history of the world a case of Down syndrome being cured. Obviously, God can do as he pleases by just saying "Be", but my son already is a miracle. As Muslims we believe in submitting and accepting the will of God. The fact that my son was born to me, extra chromosome and all, is His will. Why are you questioning it? Why is this an imperfection something that needs to be cured?

An way, back to culture. I was once told by a woman that had spent alot of time in Lebanon, that it's almost like people with disabilities are invisible there, like they don't exist. I have never been to the Middle East so I have no if this is true.

Just curious for those of you out their from other cultures, or familiar with other cultures or countries, do you find this type of attitude in said place or among said peoples?

Son

2009-07-21T22:14:00.000-07:00

You were the one I knew in the womb
Like a dream I never wanted
A spark gleaned from darkness
Sweet and surreal
A shadow gliding on silver tipped wings
The myth of perfection
Shattered like ice
You came howling among
hot blood and tears
Drawing in air as I myself wept in gratitude
to The One, The Eternal

S.H. 2009

The Journey Begins: A Prenatal Diagnosis of Down Syndrome

2009-07-21T19:56:00.000-07:00

This is a story that I have been meaning to write for a long while. It was difficult for me to begin because it meant reliving a time of great pain in my life. This is the story of how I found out my unborn son would have Down syndrome.
My husband and I married five years ago. I have a son from a previous relationship before I converted to Islam, Nathan. After we were married for about a year I gave birth to our first child together, a little girl named Zainah. Zainah was a beautiful olive skinned baby with light blue eyes and lots of light brown hair. However, it became clear to us, that something wasn't right when she just wouldn't eat and wasn't gaining weight. Finally, after almost three months my pediatrician finally got us into see a pediatric cardiologist, who told us our baby girl would need to be airlifted to Kansas City for immediate surgery. She had a condition called an aortic coarctation, which is essentially a kink in the aorta. The cardiologist also said that there they would do a genetic test to see if she had Turner's syndrome. Apparently, that particular cardiac anomoly is seen frequently with Turner's. Zainah did fine through the surgery, but was in heart failure due to the stress the coarct had on the aorta and continued to need to take diuretics and antihypertensives. During this time, we awaited the results of the karyotype, and finally, we got the call that she did indeed have Turner's syndrome.
Turner's syndrome is a lack of an X chromosome in girls. There are some very subtle physical characteristics associated with the syndrome such as thickening of the skin in the back of the neck, a wide, protruding breast bone, and low set ears, to name a few. The big thing with Turner's is that it affects the ovaries, and they are essentially non-functioning. Therefore, girls with Turner's syndrome are almost always (99%) sterile and also have to take hormones to stimulate puberty. They may also have to take Human growth hormone since low stature is also almost always associated with the syndrome.
Approximately two years later we had our second baby, Somaya, a curly headed, dark eyed girl, who alhumdullilah has always been very healthy. But our worries with Zainah weren't over yet. We soon found out that she had a Wilms tumor, which is a cancerous tumor of the kidney. She underwent surgery to remove the entire kidney and went through chemo for about 4 months. After it looked like her cancer was for sure gone and (hopefully) wasn't coming back, we decided to get pregnant again, my husband hoping for a baby boy.
So at this point in time, I thought for sure that all our troubles regarding our children were over. I mean, how much bad luck can one couple possibly have regarding their children's health? Little did I know that our world was about to change forever.
At this point I want to say that I am about to reveal some of the emotions and thoughts that I had during this time. Some of them may be offensive; they are definitely dark and I don't mean to offend any one with anything I am about to say. I certainly want to stress that these are the feelings I felt at the time and in retrospect, thank God, know that this is not what having a child with Down syndrome is even remotely about.
It all started at 18 weeks when my doctor asked me if I wanted the quad screen performed. I said yes, I had had this blood test with all my others and I would want to know if there was a problem the baby so I could be prepared. I gave the blood and expected to never give it another thought. One afternoon about a week later the nurse from my OB's office called. I thought she was going to call out some antibiotics for the urinary tract infection I thought I had, and had given a sample at that last appointment. She told me my quad screen came back positive for Down syndrome. I remember going into immediate denial. She told me the Dr. wanted to move up my ultrasound appointment to make sure my dates were right, since that can skew the results. I told her no that wasn't necessary. Why did it matter? There was absolutely no way I could possible be pregnant with a child with Down syndrome.
"Do you have any questions?" she asked.
"Do you have the results of my urine test?" I said dumbly.
I hung up the phone and the fear rushed in. I immediately went on the internet to find out everything I could about the quad screen. I learned that the results are given in a ratio. Generally, your results are considered "positive" if that number is greater than the normal risk for your age. I did remember the nurse giving me some numbers. What were they? So I called back.This time it was a different nurse who told me that my results were 1:256 for Down syndrome and my normal risk for my age was 1:350. Well those were good numbers. She also was very kind and told me sometimes she didn't like these tests because they often have false positives and worry mothers for no reason. She told me to try and not worry, she was sure everything would be fine. I told her I did want to move up the date of my ultrasound and so we rescheduled that.
The day of the ultrasound I remember feeling somehow removed from it all. I took my seven year old son with me. The tech looked carefully at the baby and told us it was a boy. Nathan, my son, got a grin on his face because he was happy to have a little brother. When she was done, she told me that everything looked fine with the baby and my dates were spot on. It was good news that the baby looked good, but I had been hoping my dates were off, and that the quad results were wrong.
Fast forward a week later and my husband and I went to see my doctor regarding what we were going to do. My husband really wanted to push for the amniocentesis because he had to know for sure if there was a problem with the baby. He was not at all happy with the prospect of having a baby with Down syndrome and even wanted to discuss termination. I firmly told him there was absolutely no way in hell I would ever, under any circumstances have an abortion. He reasoned it wasn't just my decision to make, that this effected the whole family. True, but ultimitely that would lay on my conscience, not to mention religious injunctions prohibiting it (more on this later...).
We discussed our options with our doctor, continuing the pregnancy with just more ultrasounds which is not diagnostic for Down syndrome but will, 50% of the time pick up markers or doing the amniocentesis. She didn't seem overly concerned giving the numbers and seemed slightly annoyed that my husband wanted the amnio done. I will say, though, that she was very supportive through the remainder of the pregnancy and never, ever pushed termination on me as some providers do.
So I agreed to the amnio, even though I was sure at this point that my baby was fine. I wanted to enjoy the rest of my pregnancy and wanted to put my dear husband at ease. We went to see a high risk OB for the procedure. It really wasn't bad considering she inserted a very large needle into my abdomen. I had a little cramping but nothing major. I left there not worried at all. I declined the FISH test which would have given us the results in two days as opposed to two weeks, so the wait began. During this time I was amazingly calm. My husband kept asking me if I thought the baby was okay, and I did.
Approximately two weeks later the phone rang one morning. I knew as soon as I heard it that it was the call. When I answered I heard my OB's voice on the line as opposed to a nurse and I knew then that the results were positive; My baby had Down syndrome.
"Is this a bad time?"
"No." I said robotically.
She went on to tell me that our baby boy had Down syndrome. She gave me the name of a local Down syndrome support chapter and said a few encouraging words. I remember thinking my voice sounded so cold and forced.
I hung up the phone and just went numb. I honestly don't know what happend in the next several minutes after this. At some point I started to cry. I still felt numb. The reality set in. Pain. More crying. Grief. Sobbing now. My husband wasn't home at this time and since he works late hours I knew I had to keep this to myself for the rest of the day. My seven year old came home from school. I couldn't control my grief and continued crying. He asked me what was wrong. I remember laying with him in his room and telling him the baby had Down syndrome and I was sad about that.
"What's Down syndrome he asked?
"I told him the baby may be a little slower than other people. He may look different. He might not be able to learn the same things as other kids his age.
"Will he be able to talk?"I said yes, but he may talk a little differently.
He shrugged "Okay." No big deal.
This was a small blessing to me even at the time. Children are sometimes so much wiser and less judgemental than us big people.
When my husband came home, he was unloading things from the car and I asked him to come sit down for a moment. He was busy and blew me off. I told him I needed to tell him something. He was getting irritated now, so I just blurted it out. I could tell he was angry. I asked him to come talk to me about it. He left. He was gone for about an hour. When he returned he told me he didn't want to talk about it. He was silent for days afterwards.
It was really hard telling my parents. I didn't want to. I felt like I was to blame somehow and didn't want to disappoint them. I knew that they would be grieving too, and I had enough of that of my own. I felt like I couldn't handle the burden of knowing I was giving that to someone else too. My mom wasn't hard to tell since she already knew about the amnio. She just said she was sorry and that it would be a challege. I don't think she knew what else to say. My dad was harder, my parents are divorced and my Dad doesn't live near me. He just kept saying "God Damn" over and over. He was in shock.
In the meantime, my shock was wearing off and I was descending into my own private hell. I would wake up crying. I would go to sleep crying. I cried in the shower. I cried while driving. I cried at work. I cried when talking to friends. I couldn't sleep because my mind kept playing random scenarios over and over. Would I have the patience to raise a retarded child? Would he be sick and in the hospital all the time? Would people stare at me when I was out in public; would they coo and dote over my baby the way they did the others? Would he have friends to play with? I would always have a child to look after; I'd never be able to do anything independently again. What would happen to him when my husband and I are gone from this earth? Would he have to live in some horrible group home? Would his siblings consider him a burden? I felt nothing towards the baby kicking inside of me. I thought it would be for the best if I miscarried. I looked at different names for him because Yusef was the name I had picked out for my "normal" child.Eventually time passed and the days became a little easier.
Sometimes I would have to push my thoughts to the back of my mind because it was time to move on and deal with it.I realized I really knew nothing about people with Down syndrome. I only knew of the "handicapped kids" that went to my grade school but were generally kept away from the rest of us. I had seen groups of them at the mall or at Walmart, chaperoned by someone, from a group home, no doubt.
One of the things that helped me throught this difficult time was a wonderful Down syndrome and Down syndrome pregnancy support groups at babycenter.com. It was refreshing to see women who were experiencing and dealing with the same emotions I was, and also, women on the other side of it, who already had children with Down syndrome and loved them dearly. At first it was hard for me to look at the children on this website. My child was going to look like them. He was going to have at least some of those physical characteristics. It was hard to think that he wasn't going to be the boy I had envisioned. But he was going to be my boy and I started to suspect that he was about to steal my heart.
And steal my heart he did on Februauy 25, 2009. After a very short labor, he came into this world with a loud, strong, cry. My husband and I immediately fell in love and found ourselves marvelling at just how perfect he was. I stare at him for hours, just as I did with my other babies. Luckily he hasn't had any major health problems. We recieves early intervention services twice a month and they come right into our home and work with Yusef. So far things have pretty much been the same as they were after I had my other kids, except that Yusef is by far the best baby yet.So that's the story of our prenatal diagnosis. Throughout the pregnancy I told everyone that I was thankful for the diagnosis because it gave me time to prepare, but in retrospect I don't know if that was true or not. It was a long, painful, difficult journey and I sometimes wonder if it would have been better to find out after I had my precious baby in my arms, knowing already how much I loved him. I sometimes regret that I spent so much time grieving what my son was, a person with Down syndrome. I forgot that I was actually having a baby, not a monster, not a diagnosis, but the sweet, precious, cuddly bundle that I have today.