Hey, take a picture, it lasts longer!!"

Remember that old saying?  As a kid, God forbid if someone as much as looked at you for a second, this would be the immediate reaction.

The saying has renewed meaning when you have a child with a disability. 

I have tried to fathom why this is.  Sometimes, when I am in a giving kind of mood, I would tell myself, hey, people are curious.  They wonder what children such as Mishayla are like.   They don't stare out of meanness, and only have benevolent feelings toward my daughter.

Some of it is who is doing the staring.  Usually if it's kids, I think that is the case.  Children do have a natural curiosity about their world.  It's like the stories you hear often about children meeting a person of color, or other minority for the first time, they wonder solely about why this person is different from them. 

With adults, I'm a little more suspecious. I really feel they should probably know better.  They are not inexperienced with the world (or at least they shouldn't be, and my patience with them is a bit less.)

One incident of inpolite staring at my daughter actually involved her extremely protective grandfather.  My father, now in his 80s, knew nothing, and had never been exposed to, children with disabilities.  But when Mishayla was born, both my parents were loving and supportive.  When Mishayla and I lived with my parents for a few months during a time our family was deciding where to relocated after Tony's job loss,  my father became even more attached to his granddaughter. 

He was becoming a "mama bear."  Or I supposed in his case, a "grandpa bear."



"Grampa Bear," my dad



Sitting in a restaurant with my parents one Sunday morning, I noticed my dad kept looking across the table at the booth next to us. 

I asked him what he was looking at. "That guy over there keeps looking at Mishayla," said my dad. "I don't know what his problem is."

I just told him to blow it off.  "People do that all the time, Dad," I said. "Doesn't really mean anything.  Who knows? Maybe he has a kid with Down Syndrome himself."

"I don't care," he replied. "It's rude, and I don't like it."

Our meal continued.  Dad kept looking at the guy, munching on his toast.  When it was time to go, we were all sliding out of the booth.  I didn't look toward the table, just walking away.

From behind me, I hear this my father's voice. "What is you're problem?"

Oh, God, I'm thinking; what is getting himself into?

Then I hear him again "Take a picture, why don't ya? It'll lasts longer!!!"

With that, Dad followed us out of the restaurant.   When he caught up with us, he said. "I had just had it with him staring. Why was he staring at her like that? I just don't understand people at all."

Confronting people along these lines can be dangerous, but sometimes, it can get pretty aggravating to just tolerate it in silence. 

Maybe it would be better if people just come up to you and say what is on their mind.  For the most part, this hardly ever occurs. 

It happened to me, once.  I was in a public library, and Mishayla was maybe a year old.  I was carrying her with me on a weekday afternoon, just needing to get out of the house for a while and do something that didn't cost a lot of money.  For me, that place is the library. 

Out of nowhere, this woman comes up to me.  Compliments me on my lovely child.  Wants to know how old she is.  I felt comfortable enough to relay some details.  Seemed like a nice enough person.  Very empathetic and all.

She looks at me pensively, suddenly handing me a pamphlet.

It was from the Jehovah's witnesses.  "You know, children like her really need Jesus."

Sigh.  So that was where the interest was. Everybody's got their own agenda. 

Think I'll go back to the staring without the comments.  With that, I can just walk away!!!

The Mama Bear in the Special Needs Mom

WARNING: THIS BLOG CARRIES SOME OBSCENE LANGUAGE!!!
 
This was on my Facebook wall a few days ago, posted by Cyndi Wise Massey, who also has a child with Down Syndrome.
 
REASONS YOU SHOULD THINK TWICE BEFORE MESSING WITH SPECIAL NEEDS MOM: (I just had to share it)

1. Some of us have given up on social skills and don't care what we say or do.
2. We're not afraid to have a serious "meltdown" of our own.
3. We are tired and all the patience we have is for our kids.
4. We have a far shorter fuse for nonsense as a result of our responsibilities but A FAR thicker skin.
5. We can get you in a hold/lockdown position in less than 3.5 secs.
6.We can shoot you a look that would make a linebacker tremble in his boots.
7.Chances are it's been awhile since we've had a full night of sleep and that will give us a reason to plead insanity.
8. Our tolerance and patience is for our kids who didn't choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.
9. We're probably already on edge and it would be stupid to push us over.
10. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?
11. We've had to fight from the moment of our child's birth so by the time you piss us off we're seasoned battlers and could win a war.
12.We devote our lives to our children and don't need more stress and people who don't understand our life.
13. Wherever there is a cub, there is a mama bear...We're always watching.

While I got a real chuckle out of this, I admit, it does ring true, and I see myself in it, like so many other moms (and dads) of special needs kids.

I've fought with doctors, nurses, teachers, administrators, insurance companies, and weird and rude people of all varieties.

Here are just a few highlights of Mishayla's mom, the mama bear, in action:

THE NURSE THAT INSISTED GUN SHOT VICTIMS WERE MORE IMPORTANT THAN MISHAYLA

1. Mishayla's g-tube fell out and the gastrostomy hole itself was exposed.  We were told by her gastroenterologist that the opening could not be left empty for more than a few hours, or the whole could close by itself.  If this were to happen, Mishayla would have to go through another surgery to reopen it, because at that time, she was not eating fully by mouth yet.

So one night when the tube came out, and we couldn't get it back in, we were forced to take Mishayla to the emergency at a local Southern California hospital near our home.  It was a Saturday night, and the ER was filled with car wrecks and gun shot victims, all of these people, we were told, had priority over our infant daughter.

They put us in a room, and we sat and sat.  No doctor, no nurse, there we sat for an hour.  All this time I'm feeling more frantic.  I could feel the panic rising in me.  If the hole closes, she will go through another surgery.  Just as I was nearly having a panic attack, a nurse walked in.

Talk about being at the wrong place at the wrong time.

"Where is the doctor?" I said.  "This gastrostomy could close up.  We need someone in here now."

She looked at me apologetically. "Well, as you can see, we are very busy tonight.  We have a gun shot victim next door the doctors are working on.....

She never got to finish.  "Frankly, I don't give a flying fuck who got shot" I said, "Get a goddamn doctor in here right now."

She sheepishly backed away. "I'll see what I can do."

Nothing happened again for about another 15 minutes.  That was it.  If I had to make this happen, I would do it.

I ran out of the room, leaving my daughter with my husband.  I ran upstairs to the NICU, where I knew the neonatologist, who knew Mishayla, was working.

I found Dr. Kumar.  Frantically, I explained the situation.

He grabbed a new tube, and followed me down to the ER.  There he inserted the tube, and we were done in a few minutes, no thanks to any of the worthless ER staff who didn't think my daughter was important.

Sometimes, ya just gotta make things happen for your child on your own.

2.  THE INSURANCE COMPANY REP WHO TRIED TO TELL ME THE SPECIAL FORMULA FOR MISHAYLA WAS NOT COVERED BECAUSE IT WAS NOT NECESSARY.

Mishayla's first baby formula was something called Pregestimil.  This was a special, pre-digested formula to help aid in Mishayla processing her food easier because of the esophageal and bowel surgeries.

As I mentioned in a previous blog, the formula was very expensive.  Over 50 bucks a can to be exact. So since you had to have a prescription to obtain it, I figured the insurance company would pay for at least some of it.

WRONG!!

So I got on the phone to Blue Cross to have a chat with them.  I was told that they could not pay for the formula because, well, for one thing, it was not medicinal, it was food.

"Yes," I said, "but it's the only food she can eat at the moment.  Not to mention it's a prescription. Now, as far as I know, prescriptions are medicine."

She was very curt with me.  "Does the insurance company pay for your vitamins?"

I'm thinking: what the hell does that have to do with this conversation, but okay, I"ll play along.

"No, I said," but me taking vitamins is not absolutely necessary for my survival.  This formula for my daughter is."

She continued with her bombastic attitude.  "Why don't you just ask the doctor to put her on something else that you can afford."

I felt myself getting hot, my stomach starting to twist.  I was done.  "I don't think we have anything more to say to each other," I said.  "Give me a supervisor."

In a moment, a supervisor came on the line.  This was what I told her.

"I suggest the next time your staff dispenses medical advise, and tries to tell me my daughter doesn't need what her doctors tell me she needs, that she have an M.D. credential to back up their mouth, otherwise, she needs to shut the hell up about what she doesn't know anything about."

Then I explained, again, that this was the only formula Mishayla could eat.  That it was not a supplement, as this lackey had suggested, that it was a prescription medication because her stomach was surgically altered.

"I'll see what I can do," said the supervisor.

Needless to say, I got the formula paid for.  It wasn't the first fight for Mishayla, or the last.

3. THE NURSE THAT INSISTED TONY AND I WERE TOO STUPID TO UNDERSTAND OUR DAUGHTER'S MEDICAL CHART.

As we were waiting for Mishayla to go in for heart surgery, her chart was sitting on the table.  Bored, and I admit, curious, I started to poke through it.

A nurse came in and grabbed in away from me.  "We don't allow parents to look at those," she said.

I was offended, but I tried to blow it off. "I was just curious," I said, kind of trying to make a joke of it."

"Well," she said. "We discourage parents from looking at their children's charts.  There is so much there that parents just don't have the capacity to understand."

Now I was mad. "Let me explain something to you," I said as patiently as I could. "I know every procedure, every surgery, every anomaly my daughter has intimately.  I live with it every minute. So there is nothing in that chart that is going to be a surprise to me, let alone something I'm not going to understand. And frankly, the insinuation that I would not understand it is downright insulting."

She wasn't expecting that. 

Luckily, for her and for me, Mishayla's wonderful cardiologist Burton Fink entered at that moment.  "Anything wrong?" he asked.

"I was just telling Mrs. Moore that we don't encourage parents looking at the charts....

He stopped her.  "Oh," he said. "They're fine. They do know everything about their child.  They're great parents!!!

It's great to have someone on your side once in a while.  But I can hold my own when I don't.

I'm sure all of us special needs parents have stories like these.  It goes with the territory.  We have a great love, and a great passion for our kids, and to get them what they deserve and need.

Would love to hear any of your "war" stories.  Share them with me here!!!

The Grief that Evolved into Light

As I stated in another blog, the first person I ever met that had a child with Down Syndrome told me "it's a grief that never really goes away."

On hearing this, I remember I found it hard to associate "grief" with a living human being.  Wasn't grief something you did when someone died? It seemed weird to me you could experience grief about other things.

But what is grief really? It is, to me, in a nutshell, about reconciliation of loss.  It's about getting acclimated to someone or something that is gone, and moving on.

According to my friend, when having a child with a disability, that "moving on" wasn't possible. 

Let me tell you first hand: my friend was wrong.

My grieving process started while Mishayla was still at UCLA. As I said before, after about six weeks of running from the high desert down to Los Angeles, which is a 100 miles per day trip, I was exhausted.  Since I could call the NICU 24 hours a day, at the urging of my worried husband, I started to go down to UCLA only 3 times during the work week.  Tony went down with me on the weekend, so at least I was there most of the week.  But I could no longer go everyday. 

So on those days I was home, I was alone.  With Tony at work, and Jared at school, I had time on my hands.  I had an old antique oak desk at the time, and it faced the wall.  I would sit there, and I would contemplate.  It became my grieving place.

It would be more accurate to say, that I tried to get my mind around what had occurred, and what the ramifications of it would be.  Sometimes nothing tangible, or useful, would even come into my head. I was so overwhelmed by it all I just sat there.  I felt like I couldn't move.

I got to thinking one day; what did I really know about Down Syndrome? It was 1999; a few years before the internet really took off, so in order to get information, I would need to get a book.  I went to the local Barnes and Noble, and browsed the limited titles that were available.  I found one book called "A Parent's Guide to Down Syndrome: Toward a Brighter Future by Sigfried Puschel.  I would later learn that Puschel was one of the leading experts in Down Syndrome.

I bought the book, not even opening it till I got home.  At my desk, I opened the book.  What I read made me sick with fear.  I had no idea in the world children with Down Syndrome could have so many problems.  Everything from the stuff Mishayla had, like bowel and heart anomalies, to trouble hearing and deafness, eye problems, joint and bone problems, spinal abnormalities, and eating problems.  This was on top of having cognitive difficulties. 

So even with everything that was happening with Mishayla, there was a great potential for more problems.  All kinds of problems, problems that were not minor, that would need treatments and surgeries.  I felt as though the future looked pretty bleak.  I was filled with a sense of hopelessness.

All parents want to leave a legacy for their children.  They want their children to take something from them, and have it when they are gone, something that is a big part of that parent's humanity, a symbol of their times and existence on earth.

For me, that was my books.  In this room, with my desk, I was surrounded by case after case of books.  Jane Austen, Mark Twain, Charles Dickens, Nathaniel Hawthorne.  Some were bound in leather; really good stuff.  I had been accruing this collection for nearly 20 years, and they felt like a part of me. They represented something I loved, and a dream I had. I had gotten halfway through an English degree in the mid 1980s before Jared was born, and I still had that dream of achieving that goal someday. 

So I felt they were a symbol of me, of something I felt was important.  And I wanted that part of me to survive.  For my kids to, maybe not love it the way I did, but to at least have an appreciation of something I had a profound passion for. 

And I had given birth to a child that would be lucky if she could ever read anything at all.

I felt it was like a cruel joke.  God was up there laughing at me.  You vain little fool.  Nobody will care about you when you are gone; nobody will remember, especially your disabled child, if she even lives that long enough to see you grow old.

At the time, in my troubled mind, I didn't even think that while Jared was not one to read these books, he would probably one day have his own children, my grandchildren.  Or I could pass the books onto friends.  Or I could donate them. The fact that Mishayla couldn't read them was not the end of the world.

But it felt that way, that day, that moment.  And that is grief. 

A process had begun, of letting go of old dreams, and making new ones.  And it hurt like hell.

As time went on, I continued to have these little moments every now and then; these moments that would rush at me, leaving me shocked and breathless, and filling me with a crippling, profound sadness.

Another one occurred after a performance.  I had a been active in a local choir that performed a few times a year. In this particular year, four of us, including the choir director, were performing a quartet.  It had taken me weeks to get my part down; the harmony was abstract and difficult for me.  I was actually scared I would get out there and choke, but once I hit the stage, it was like magic; everything fell into place, the harmonies were perfect.  The song went off without a hitch.

I had loved music as far back as I can remember, and I always wanted to sing.  Very few things give me more pleasure.  I first sang in front of an audience at the age of 12, and it was an exhilarating experience.  I was hooked.

I was in choirs all through junior high and high school, singing in groups and as a soloist.  I had gotten away from it for a while, and had returned to it just before I got pregnant. 

Anyway, after our quartet was done, I was just sitting backstage, watching another soloist perform.  One such soloist was a 13 year old girl, with long golden hair.  She walked up to the microphone, opened her mouth, and began to sing "Somewhere Over the Rainbow." For her age she was extremely poised; her lovely soprano floated over the stage. 

As I was sitting there, enjoying this, recalling my self singing at that age,  it suddenly occurred to me. 

My daughter would never be able to do this, would never be able to enjoy performing or singing, or any of those things.

I felt the tears fill my eyes, the lump in my throat was strangling.  I got up, and ran out of the stage door into the green room, sobbing.

When I got there, the theatre house manager was there, who was also a good friend,  Of course, with the state I was in, she wanted to know what was wrong.  When I told her, she just looked at me.

"Cyndee, you don't have any idea what Mishayla will or won't do at this point.  Whose to say she won't ever sing? You just don't know what will happen."

Of course my friend was absolutely right.  But in the grips of that grief, you sort of lose prospective. 

And as the years have unfolded, I have indeed learned that, just  like any child, what a child with a disability can do is limitless.

There is no doubt Mishayla inherited my love of music.  At her age, I would sit with the headset on, playing James Taylor and Carole King and Chicago and Elton John for hours (yes, I grew up in the 70s!!) Now she has her MacBook and loves Lady Gaga, Kelly Clarkson, Rascal Flats, and Carrie Underwood.  Not to mention Adele!! She is as glued to her music as I was.

And a few months ago, she performed with the 7th grade choir.  She was shy, telling her father "Dad, I don't think I can do this," but once she got with her friends, she was fine.  She didn't sing a note, but she stood with the other young women in her class, and was surrounded by the music she loves. 

She will probably never be a soloist.  But she still is able to enjoy music.  And the truth is, she is not me. She would not have been me, even without the disability.  Our children have their own path to cut through in their lives. 

Mishayla, of course, does read.  And she enjoys books.  I read to her extensively, and her teachers say that it shows.  She may not read Faulkner, but then, a lot of people are glad they never have to read Faulkner.  As long as she is reading something that gives her pleasure and challenges her mind, what does it truly matter?

Many times, parents with children with disabilities put their expectations lower than they should be.  Mishayla has surprised us time and time again with her abilities, far beyond any of our expectations. 

And that is the key.  You need to throw away the expectations.  Don't make them too low, or too high. Take one day at a time. And just see what happens, making the adjustments that are best for your child, who is truly unique beyond measure.

I think this can also be true when it comes to medical diagnosis.  It is fine, and truly, essential, to know about your child's diagnosis.  But I wouldn't borrow trouble.  If your child doesn't have ear or eye problems, there is no need to believe, just because of the T21, that they will get these problems.  Focus on what is important, that is, what your child actually has.  And again, take things slow.  It's very easy to get overwhelmed.

I am pleased to admit that don't have those moments anymore.  And yes, they do go away.  They grow into something much deeper, much more endearing.  They are filled with hope, and with light.  The light my daughter gives me has made my life rich and blessed, and a better human being than I ever would have been without her!! She is truly my greatest gift!!

Mishayla fishing at Forest Lake, 2011

The child they said would never eat

Once all Mishayla's surgeries (with the except of the heart surgery) were completed, it was just a waiting game.  Make sure she doesn't have infection, make sure everything is working as best as it can be. 

The days stretched out before me, all the same.  I would get up in the morning and leave my house in the high desert at about 8am in the morning and drive to UCLA arriving about 10 am in the morning.  With the assistance of the nurses, I would sit and hold her, and sing to her, and talk to her. She would open her eyes and look up at me, but mostly she would sleep.

One morning I was watching one of the NICU nurses feeding her.  They would bring a one ounce bottle filled with formula to her, open up her feeding tube, or G-tube, and pour it down.

I had desperately wanted to be able to nurse her, but of course that was impossible.  Then I figured I would pump and bring the milk, but that didn't work either.  My milk never did come in. I had only just a drop of colostrum, and that was it.  We tried hot showers, we tried using a pump, which left me screaming in pain. So Mishayla was left with formula.  They claim this was due to the stress I was under from everything that was happening, I had no "letting down."

I was beginning to wonder when they were going to try feeding her by mouth.  I mean, her esophagus was repaired, it sort of seemed a pity not to use it. I figured the gastrostomy would be closed up before I took her home, and she would be eating. 

That same day, before I went home, the nurse said to me " you need to start learning how to use the tube."
I just stared at her, "Oh, I said, "I didn't think I would need to do that."

She looked at me, questioning, "well, you do want to take your baby home soon, don't you?

Well, what a stupid question.  Of course I wanted to take the baby home.

"Of course I want to take her home, I said.  but I assumed that G-tube would be removed before she went home."

She looked astonished "Oh, no, no," she replied.  "She will more than likely need this the rest of her life."

I felt a sick feeling in my stomach, a ringing in my ears.  "but her esophagus was fixed," I replied.  "Why would she continue to need the tube?"

She realized she was backed into a corner. "I suggest you talk to the doctors."                 

When I did talk to the surgeon, I was somewhat reassured.  "There is truly no way of knowing how she will do; that is why the tube must remain indefinitely.  The esophagus is a muscle, and right now, it is very weak.  It could take a very long time to work properly.  Some children need the g-tube their entire lives, some only use it for a while. There is no way of  knowing at this point what your daughter's needs will be.

But in my mind, how would they know if she could eat through her mouth at all if they didn't even try.

"Can we at least try to give her something by mouth?" I asked.

"Yes," he said, "but you will find she is not able to take very much.   It is going to be slow.  And you are going to have to use the tube."

At the moment, Mishayla literally had a tube hanging out of her side.  I was told when she grew a bit, they were going to put in what they called "a button," which was literally like a small cap, that you open to insert the feeding tube. 

But I decided, since the doctor said it was okay, to try and start feeding her.  The problem was she was extremely weak.  Eating is the hardest work a baby does, and for a sick, premature infant, it is a monumentus task.  I would sit with her, and she would suckle for a minute, and then she would become bradycardic.

This means she quit breathing.  It is like an apnea.  Since she was hooked up to monitors, I could see, after she ate, the oxygen monitors going off, and her oxygen saturation numbers starting to drop.  She could potentially die.

The nurses would take her back, give her oxygen, and in a few minutes, her numbers would go back up to normal. 

I would feel like the most horrible mother in the world.  Was it so important that she eat normally if it was going to jeopardize her life?  Maybe I should just say the hell with it.  It wasn't worth pushing her.  I felt like I was killing my own child.

I would get in my car for the long drive back to the desert.  It was my time, there on the San Diego Freeway. I screamed, I cussed at everything (mostly God; I really hated him), and cried to the point where I would have to pull over and puke on the side of the road.  I felt a helplessness so profound it was unfathomable.  My child was suffering; there was little I could do.

But each day, I would go back, and I would only give her a few sips from the bottle, and put the rest down the tube.  I kept just giving her a little taste, hoping maybe when she was stronger, she would eat. After about six weeks, I was so exhausted from driving nearly 100 miles per day, I was falling apart.  The doctors finally decided Mishayla could move back to the NICU unit of the hospital in Lancaster where she born. Here, she would stay for another two weeks, making her hospital stay a full two months long.  She was born August 3, and came home October 4.

When I got her home, I continued to give her just little bits of formula. The doctors had put her on a special formula called Pregestimil, which was a  predigested formula so the stomach literally does no work to break the food down.  It was by prescription only.  We took the prescription to the local pharmacy.  We order four cans to start with.

"That will be $200.00, please," said the clerk.

Tony and I looked at each other.  We didn't have the money.  Tony pulled out his credit card.  We had no idea it would be this expensive, no one told us.  I fought like a maniac, and finally got the insurance company to pay for it.  But dealing with insurance companies is another whole blog post!!

I got as far as 1/10 of an ounce one day, but she would either have an episode of bradycardia (we had to take a monitor home with us for that reason) or throw it up.  The doctors had her on a drug called Reglin for reflux disease, which was supposed to help, but as the weeks went by, she was not improving.

I called my pediatrician.  He recommended a doctor in the San Fernando Valley named Said Dallazdeh.  He was a pediatric gastroenterologist.  "This guy is amazing," the nurse said.

So I packed up my baby, with oxygen tanks and monitors and the whole deal, and went to see this doctor.  He was a tall, skinny man in his forties, with a thick accent, which turned out to be Iranian.  He came off as arrogant and unapproachable.  He told me  "I care about babies, and for babies to do well, they have to have good parents who understand what is going on with them.  Do you understand  about your  daughter's surgeries?

Terrific, I thought.  He was pissing me off. "Of course, I understand." I proceeded to explain in detail what had been done to Mishayla.

Of course through this whole antagonist interchange, Mishayla, for some reason, is screaming.  The doctor's anger rose "What is the matter with that child," he admonished me. "That child is uncomfortable.  Find out what is wrong with her."

Well, I had no clue what was wrong with her.  I was on the verge of tears, but I figured crying would not be such a good idea with this drill sergeant of a doctor.

He took her from me, and soothed her.  She quieted down.  "First she needs x-rays," he said.

The next day Tony and I were at Northridge Hospital, where the x-rays of our daughter's esophagus were taken.

When he showed us the pictures, we were shocked.  Her esophagus looked like an hour glass.  It was almost completely closed off.  No wonder the kid couldn't eat.

The doctor explained Mishayla needed to have her esophagus dilated.  He was patient, and explained the procedure in detail.  He would insert a balloon like device into her esophagus to attempt to stretch it out and open it.

But there were no guarantees.  "Sometimes, it works, sometimes it doesn't," he said.  "Sometimes it takes one dilation, and it opens up.  Sometimes it takes 20."

What were our options?  If we didn't try, what had been the point of going through all we went through to have her esophagus connected?

So about every two weeks, we started coming to Northridge Hospital, where Mishayla was admitted and prepped for the procedure.  Every time they would take her away, I would feel that same fear.  The fear she would never come back. 

But each time she did, and each time, the doctor was optimistic.  He turned out to be a very personable, caring doctor. 

"People are afraid of me when the meet me, " he said once. "But I'm really a nice guy," he once joked.

Gee, no kidding, I thought.

He was a doctor that would take a poor child, and help them for no money at all.  These kids had no insurance, no nothing.  Some were so ill they were near death. He would tell us because we had decent insurance, and could pay, we were helping him be able to work on these poor children.   He was a doctor that had a passion for children, and healing them, like I have never seen, and have yet to see again.

The last dilatation was on New Year's Eve day, 1999.  The new millennium was to begin.  The whole world was in the process of a massive celebration. Since we didn't want to stay overnight, we came home with Mishayla. I remember Tony had gone to bed, and Mishayla was asleep.  I put the TV on right around 11:45.  I remember the fireworks, the cheering, the big sign that said "2000" lighting up at midnight. 

And that was about all I remember. I never made it to the bed.  I was out, right there on the sofa.  I was exhausted.

But in a few days, Dr. D (this is what he told everyone to call him, since no one could ever say "Dallazdah" (it is pronounced DA-LA-ZA-DAY, nothing all that hard, really) called with the great news.  Mishayla's esophagus was open.  No more dilatations.  They were able to fully open it in four procedures. 

A month or so later, Dr. D. connected Mishayla's "button," which capped off the g-tube.  This made life much easier than to have to haul around a child with a long tube hanging out of her side. 

Mishayla at about 6 months; with her "button"



Not that this made the eating process miraculously fall into place.  Still, she would spit up, and tire easily. But Dr. D. said to feed her, that I should know by now what she could tolerate.  

Little by little, she was able to take more by mouth as time went by. I remember the first time she consumed an entire ounce of  formula at one sitting.  She was probably about 6 months old. 

Small "baby steps" that paid off.  She was eating fully, including solid food, by about 18 months. 

Is there a moral to this story? It would be a cliche to say "don't give up" or "perseverance pays off," because it's really not that simple. 

Why did it matter so much to me, whether she ate with a tube, or a fork? In retrospect, all these years later, that is hard to answer.  Maybe I was more worried about my own ego than I should have been; having a kid that never ate food by mouth.  Maybe I found it a little repugnant, or I was a little embarrassed.  All those things are hard to admit.

But they are also human.  I wanted her to eat, and I didn't give up.  She deserved to have one of the most endearing pleasures of being a human being, that is, to put a piece of food in her mouth, move it around, feel its texture, its taste. To take pleasure in a Happy-Meal, or Halloween Candy, or a piece of birthday cake. I wanted this for her more than I wanted my own life.

Those who know me the best know I am infamous for my stubbornness.  Taurus the bull, that's me.  When I want something I get it. 

But I also, with this experience, had to learn patience.  That my daughter was her own being, and would do what she needed to do in her own time.  I had to get into my daughter's rhythms, and take myself out of my own.  In the end, she was leading me, not the other way around. 

This is something that every parent of a child with a disability has to learn.  You take your cues from them.  And they will teach you. And it's hard as hell to do, but it comes after a while.

It's an experience, and a love, like no other.

Why did those in the medical profession tell me "she would never eat?" I can only surmise that they are        taught to give parents the "worse case scenario" so if the child does better, fine, and if not, there is no disappointment.

Which is crazy, because no parent ever, ever, no matter how bad things get, gives up on their child. It is as natural as breathing to hope for the best for our children.  It's been engrained in parents since the beginning of time. 

And that was it; I hoped for the best.  And by great luck, and a little failth, I got it.  Not to mention one cranky, curt, brilliant, wonderful doctor.

Thanks, Dr. D!!!

Mishayla enjoying her toast!!!

What Tony says I left out

Tony says there are important parts of this story I haven't written about. 

We'll, that is probably true.  So I have decided to devote this post to the things Tony thinks I should have put in here and didn't, and a few other things.

Tony has been supportive of my writing; but he thinks I should be writing a book.  I told him I want to do the blog, because with the blog, I can reach more readers, and in reaching more readers, I can help more people understand that while having a child with Down Syndrome is challenging, it is absolutely more than worthwhile. Maybe I'll write the book one of these days, we'll see.

I met Tony when  he was a graduate students at one of the most prestigious art schools in the country, that is, California Institute of the Arts.  He received a Master of Fine Arts Degree in 1992, and proceeded to embark on a career as a Scenic Designer.  He spent a few years working in the film industry, until in 1994, a community theatre opened in our growing desert community of Palmdale, and he was recruited to take the job as their Technical Director.

For the next five years, he devoted his entire being to this endeavor.  It was a new facility, and for him, it was a labor of love.  But it was also a job that took sometimes as much as 80 hours a week of his time.

So since he was so devoted to his career, and I was so wanting a career for myself as well, and I already had Jared, I didn't think having another child would be such a great idea.  We were satisfied with our life. At least I thought we were.  But as I've written before, I always, deep within, wanted another baby.

Because he was so devoted to his career, when I got pregnant, I was not sure what kind of a father Tony would be.  But Mishayla is truly the love of his life, of that I have no doubt.  I could not have asked for a more devoted father for my daughter.  The fact she has Down Syndrome never bothered him for two seconds.  In all honesty, I think it was more of an issue for me in the beginning than for him.  I felt more grief, more loss in having a child with a disability.  His only concern was her health and survival. 

Tony and his "peanut"

Anyway, these are things that Tony thinks should be included in the story of our journey.

The first thing, is that he wants everyone to know is about his trip to the hospital, which he achieved in lightning speed.  He was able to do this because he drove on the sidewalk.

He had the monumentus task, from the time I finally reached him and said, "You better get here, because they are wheeling me in the delivery as we speak," to get to the hospital to see his baby born.  It was 10am on a Tuesday morning.  You'd think there wouldn't be a lot of traffic, but then if you do think this, you must not be from Southern California.  In So. Cal, no matter where you are, there is traffic, 24/7.  So if you know the Antelope Valley, he exited the 14 freeway, turning right on 20th St W., which at the light, takes you to Avenue J, which takes you to the hospital.

He got to the light at 20th St. W. and J, and got stuck.  People were slow.  Nobody was moving.  So he drove up into a turn pocket, and up onto the sideway with our 1995 Saturn SC-2. This enabled him to make his turn onto Avenue J and proceed to the hospital. 

He was very lucky, because the Antelope Valley is rife with  Los Angeles County Sheriffs who are nasty, crabby people, and this would not bode well for even emergency journeys on the sidewalk.  He could have ended up in jail.  How he avoided pedestrians, bus benches, fire hydrants, and trees I have never been able to ascertain.  But he did.  And he made on time.  By the grace of God!!

Speaking of God, Jesus, Buddha, Alla, Zeus, whatever you believe, Tony also thinks I should relay another experience I had while giving birth. 

I didn't initially write about this, because frankly, I thought people would think it was a little corny; you know, spirits and ghosts and all.

There is a belief in the Jewish faith that when someone dies, it takes a while for their spirit to settle down, and go with God.  At the time of Mishayla's birth, my father-in-law, Jim Moore, had only been dead a mere six weeks. His loss was felt heavily by all of us, especially his oldest son Tony, whose child I was giving birth to, and his father would never see.

Jim was the protector of his family, not only to his wife and five children, but to his numerous nieces and nephews, and of course to his grandchildren.  He was the sort of the "go to" guy.  He was there for people, and he could be depended upon in a tight spot. 

So after they took me off the pitocin in the middle of the night, and the contractions started again, and I was lying there in a dark room with only the machines to illuminate the walls, I felt a presence in the room. The blanket that covered my feet and legs moved, as if someone was at the edge of the bed, as if someone was visiting me there.

I immediately felt it was Jim.  At first I felt startled, and a little frightened.  I had never experienced anything like this before.  People talk all the time about these types of experiences.  Just after my own grandfather's death, my mother claims she saw him at the edge of her bed one night.  She saw him, and once she was startled fully awake, my grandfather was gone.  It had been momentary presense, as if to say "it's okay, I'm still with you, so it's fine to let me go; I will never truly leave you."

Maybe Jim came to protect me, to see me through this labor.  Maybe he came to protect his granddaughter.  But for a tiny second, his presence was large in the room, and I felt a sense of comfort, a momentary sense of well-being.  It was his last gift to his son and I, and his first gift to the granddaughter that would be born that morning.

Some would say this is nonsense; that the dead don't go wandering around.  I beg to differ. Those we love never pass from us really.  They are always present, in our minds and hearts, and they manifest themselves in many ways.  Those ways are personal, and everlasting.

Tony and Mishayla at the California Poppy Reserve

In Santa Fe, New Mexico, 2001

So there you have it for what I left out.  Since my memory from nearly 13 years ago is at times sketchy, there may be a "What Tony says I left out" part II. 

Since after all, this story is as much his as it is mine.

The Living Child treated like Dead

Giving birth is a joyous time for most people.  Everyone is excited.  A new life has come into the world.  The possibilities are endless.  People swoon over all the baby's pictures.  They're filled with compliments. Congratulations are abundant. 

Unless that baby has Down Syndrome.

Your baby's birth is treated like a tragedy.  Well, isn't it a tragedy? I mean, this kid has a disability, right?

NO NO NO!!

People say I'm so sorry.  Everybody is sorry.  Like she was born dead or something.

Trouble is, we had a living breathing female child who was beautiful, and very much alive.  I would say, "Why are you sorry? I'm not sorry."

Then I would get, "well, it's so hard to know what to say."

I tell people, "Say congratulations.  That is what is said when anybody has a baby."

But you could tell, with some people, this concept of congratulating new parents who had just given birth to a child who happened to have an extra chromosome is, well, a big strange.  Like cramming your finger into a light socket strange. It just didn't fit. 

It's not like we didn't get it, to a degree.  We knew Mishayla had a disability.  We knew we had, as the doctors said, "a marathon" to run, that most people would never have to experience.

But it certainly wasn't a tragedy. 

People acted like it just didn't happen.  At the company Tony had been employed at for five years at that time,  there was no mention of our daughter's birth in the company newsletter.  At least three other births were listed for the month of August, 1999.  And they knew we had the baby. 

I would bring pictures to show people.  Pictures I'd taken at UCLA (most of the pictures I showed around to people were posted in a previous blog).  People would look at them, nod their heads, and hand them back.

Not a word.  Like they were looking at a picture of a plant, or a car, or God knows what.

Certainly not a picture of a newborn child. 

If I had to describe to you what this made me feel like, it felt like rejection. Like I had something wrong with me to be touting around these photographs of this newborn, thinking that I had something worthy to show. Like I didn't get it.

What I got was that people needed educating.  That their lack of compassion was shocking. 

And shockingly, the medical community, who should really know better, was one of the worst culprits when it came to this.

We had filled out a birth certificate before leaving the hospital where Mishayla was born.  Mishayla Rose Moore.  Her full legal name.  The certificate said "Live Birth."

But the people at UCLA would not call her by her name.  Stuck to the  front of the little plastic crib Mishayla was in, was the sign "Baby Moore."

This drove me up the wall.  Every morning I would go down to L.A. to see her, and I would say to the nurses, "Mishayla this," or "Mishayla that," when discussing my daughter.  They would come back with things like "Mishayla?" like they didn't even know who I was taking about.

Then the light would shine.  "Oh," they would  say. "You mean Baby Moore?"

It was like they were saying we can't give her a first name because, well, she's sick, and she just might take a turn for the worst.  Why bother giving her a name for that reason? Aren't you just setting yourself up for a lot of heartache?  I guess they presumed it would be easier to bury "Baby Moore," instead of "Mishayla Rose Moore."

As they say in the texting world, "WTF??"

One day I had finally had it.  I asked them to remove the "Baby Moore" sign from her crib.  "I don't want to see that on there anymore," I told them.  "Either put one up with her name on it, or leave it off."

Those of you that have had children in the hospital know the medical community does not generally take well to uppity parents like myself.  They think they know best. 

Nobody knows best when it comes to Mishayla but Tony and me, period.  And once again, to me, it was the same old thing.  If you don't act like this baby is here, she will not be here.

Finally a nurse listened, and did put a sign up on her crib with her name on it.  I asked that it be notated in her chart that she was no longer to be referred to as "Baby Moore."

I hope no other parents goes through what my husband and I did as far as this goes.  But if this does happen to you, stand up!!  Say "This is our baby, and she is perfect!!"

And spread the word. Teach people to say  "Congratulations" at the birth of any baby.  Because all babies, and all parents, deserve it!!

I challenge anyone to say this baby isn't beautiful
Down Syndrome and all!!



A Guide to Surviving Your Child's Surgery

There is no doubt nothing more disconcerting and more frightening than watching your child being taken off to surgery.

It is a feeling of utter helplessness.  You are trusting the life of a human being you love more than your own breath to other people. And anything could happen.

Of course they try to be positive.  "Oh, the surgeon has done many, many of these surgeries," or "Don't worry, everything will be fine."

By the same token, you are presented with tons of forms asserting the risks of the procedure your child is about to have.  They tell you not to worry, then hand you a piece of paper that says the anesthesia could kill them.  Of the medications they are given.  Or just about anything.

My first experience with this was the morning after Mishayla was born.  That night, they inserted the feeding tube in Mishayla's side, the most important surgery for her, because with a closed esophagus, this was the only way Mishayla was going to gain any nourishment.  This was done right after Tony left the conference room, meeting with all the many specialists that would participate in this massive endeavor to repair my daughter's anomalies.  I was not there yet, since I was yet to be released from the hospital where I gave birth.

But the next morning, after my release, the doctors were going to attempt to connect Mishayla's esophagus.  The surgeons tried to be positive, but the nurses in the NICU were less so.  One told us that what one of the other doctors had told us; that there may not be enough tissue to even connect the esophagus.  They may have to wait till she was bigger, when there was more tissue available to connect.

One nurse told us, point blank, not to get our hopes up.

Was this wrong of her to do? I guess it depends on how you look at it.  If you're a glass half full person, you could say it was wrong, that hope would have been more appropriate.  If you're a glass half empty, you could say she was right for her not to dash our hopes with such a negative prognosis.

I tend to agree with the former.  I think being positive to start would have been better; to say, "they are going to try this, and let's hope it works," and leave it at that.  To tell a parent "not to get their hopes up" regarding their child, is cruel.  And it's impossible.  Because no loving parent is going to believe, in their heart, that bad things are going to happen to their child.  Call it a survival mechanism, if you will.  In order for us to survive, we must believe the best when it comes to our children.

But in the medical community, this doesn't seem to be the prevailing notion.  Especially when it comes to a child with a disability.  We encountered this negativity again and again.

But on this day, we kissed our newborn daughter goodbye, and watching the team of nurses and doctors and surgeons wheel her off to the operating room.

The minute you can no longer see your child, you are left with a horrendous sense of loss.  Like someone had cut off one of your appendages.

Me; I spent about a half hour heaving in the women's room.  Heaving and heaving, with nothing coming out.

After that, we had to find something to do.  A diversion, a distraction.  If that was at all possible.

Food is one diversion.  I know, pretty gross after all that puking.  But suddenly, I was starving.  We ventured down to the UCLA cafeteria.

Filled with every type of culinary treat, the UCLA cafeteria has it all.  For a hospital cafeteria, health food was not the focus.  It had a pasta bar, a pizza bar, a deli, hot food like fried chicken and other meats, you name it.  And the desserts: wow; cakes, cookies, pies.  And junk food galore; chips, nuts, pretzels.  All you can eat.

And yes, there were a few token fruits, and yogurts and things that were healthy.  And a pretty nice salad bar too.

But you can't drown your worries in lettuce and tomato and vinaigrette dressing.  At least I can't.

So we did a fair amount of eating.  My personal favorite is always deli sandwiches.  Turkey and Ham piled high on a roll would always be my personal comfort food of choice.

As time progressed, and Mishayla has more surgeries, we spent a lot of time in hospital cafeterias.  We often joked that we should write a guide to the best hospital cafeterias in the city of Los Angeles.

Here is list of the best and the worst:

1. As I said, UCLA is the best, for its size and variety.   Nice patio, too, for outdoor dining.

2. The next best would be Cedar Sinai.  Quite a bit smaller than UCLA, but the highlight of this one is their mexican bar.  Great quesadillas.  We spent a lot of time there when Mishayla had her heart surgery at 10 months old.  Since she had complications, we were there two weeks instead of the five days we had initially anticipated.

3.  Northridge Hospital is next.  Small cafeteria, not much.  Some good soup.  We spent most of our time there at a local Jack-in-A-Box restaurant.  Also had a horrendously terrible meal at a local Sizzler restaurant.  And I mean terrible.

4. And finally there is Antelope Valley Hospital.  I don't know about now, but when Mishayla was born in the late 90's, all they had was vending machines.

So there ya have it; the best and the worst of hospital cafeteria cuisine.  I'm sure there are hospitals with better food, or worse food, but those are the only hospitals I know.  Thank goodness for that!! I don't want to know anymore.

Also, a word to former smokers; if your child has surgery, you may feel the urge to light up.  I know I did.  I hadn't smoked since right before I got pregnant with Mishayla.  And I wanted that cigarette; badly.

But then I thought...how stupid.  Will smoking make my daughter better? Nope,  not at all.  All it will do is make me stinky with cigarette smoke, and give me those horrible bouts of bronchitis again.  So I was strong, and did not partake.

Talking to God is also helpful.  Depending on your beliefs, and your needs, this could bring you solace. My conversation with God some would probably not approve of.  They were often along the lines of "why, me, why my kid, why us?"

Then the old Catholic guilt would set in; I would ask God, "Okay, what did I do to deserve this? Why was I being punished?  Was I too promiscuous in high school? Was it that candy bar I shoplifted when I was 13? Because I got divorced? Filed bankruptcy? What? What could I have done that was so bad to deserve such an ill child? And why didn't God punish me?  Why punish my innocent child?

I realized I was beginning to sound like that minister at the hospital that told me this was because of my sins.  Ridiculous.  I was essentially searching for an answer where there was no answer.

So I said forget it.  The only thing I did ask God was to save my child.  Yes, I know I wasn't the greatest believer.  Please, I asked, save her anyway.

I hope if your child has surgeries, you have lots of family and friends to be there for you.  My husband and I did not.  Since our families didn't live in the Los Angeles area, it was not easy for them to come. Eventually, Tony's mother and sister came, and my parents as well, but the days of the surgeries, it was just Tony and I.  

I know people are busy, and I'm not saying they don't care.  But don't be surprised if some people you call your friends don't show up at the hospital.  I think people have a real hard time facing a parent going through this.  They say stupid things like "I don't know what to say." I will elaborate on my thoughts about this in another posting.

But we got through it all.  As afraid as I was, I summoned the courage to walk out of the hospital during the surgery.  When a child has a surgery that lasts for many hours, getting out of the hospital is a essential to keep your morale up. We walked the streets of Westwood Village, looking in the shop windows.  We went in the stores.  You get into the rhythm of the world, and it gives you a sense that life has gone on, and not everything has changed, and that there are things you can count on.  The summer sun came up, people are going to work and going to school, the cars and the buses are running up and down the streets.  It provides a sense of comfort that some things don't change, even though you know your world will never be the same.

And maybe God, or the higher power, or whoever is up there, does listen, because a miracle did happen.  When we saw the surgeon, he told us he was able to connect Mishayla's esophagus.  There was just enough tissues to repair it.  And that she had done amazingly well.

Of course, I'm sure I missed a few things in my survival guide.  I'm sure other parents who have gone through this will tell you other things to do while waiting for a child to have surgery.  But one thing I think every parent who has been through this will tell you.

Never, ever, ever, give up hope. And don't let anyone take your hope away.  Just the fact that your child is here is a miracle, and with that, everything is possible.

Down Syndrome and the Sins of Eve? Bible scholars, please explain!

I  realized, talking not only to my  husband, but to some of my writer friends, that I need to back this story up.  I left something important out that occurred.

Please understand that it is not my intent to offend anyone.  I was afraid to tell this part of my story for this reason.  But as my cousin and fellow writer Heidi says: "Ya gotta make it real."

So I'm going to tell you about an incident that occurred before I left the hospital. 

I was raised Catholic.  Never liked it much, but I went through all the catechisms and such as a child because my mother, who was a non-Catholic, signed some sort of a paper when she married my father in 1950, which stated she HAD to raise her children Catholic.  She kept her end of the bargain.

But she also told my brother and I, after we were confirmed, we could do whatever we wanted to. 

So as a child of the 60s and 70s, who believed (and still do) in free will, which the church really doesn't support, after confirmation at 13, I never went back.

But after having Mishayla, I felt the need for some sort of connection to a higher power.  Tony and Mishayla had already left the hospital late that afternoon.  Jared and Scott, my son and his father, were gone. I was alone with this ache.  Guilt, sadness; so many feelings were just overwhelming me.  So I thought, "what the heck?"

I called the nurse. "What it be possible to send a priest up here?" I asked.

"Sure," she said, "No problem."

When the gentlemen I thought was going to be my priest entered the room, he was not wearing a priest's garb, or even the collar.  I found this weird.  Well, I had been out of the church for so long, maybe they didn't wear them anymore.

He took a chair next to my bed.  Introduced himself.  I don't remember his name now.  I asked if he was indeed a Catholic priest.  "Oh, no," he said, nearly insulted at the implication.  He said he was from some local evangelical church in town.

Well, that was fine.  With the condition I was in at the time, I would take what I could get. 

I can't, all these years later, remember my conversation with this man verbatim.  But I remember the important parts. 

I remember asking why would God do this to an innocent child.  That I just didn't understand. 

This is basically what he said.

"You must understand that man is sinner," he replied.  "We must be punished for our sins.  The sins of Eve we all must pay for.  Your daughter was born, and children like her, to pay for these sins."

I didn't say anything.  I didn't know what to say.  Is that why my daughter was the way she was? Because of my sins? What sins had I committed? I was a decent person.  I wasn't perfect.  Nobody is. 

I felt sicker and more full of anquish than I had before this guy had come in here.  I wanted to throw his ass right out of the room.

He insisted that we pray.  I don't remember the prayer.  I was too shocked to even think.  I remember closing my eyes, and faking prayer.  All I wanted by then was his absence.

He left, and I felt horrible.

He showed up again the next day, when Tony came back to the hospital to pick me up, and take me down to UCLA.  It was very important to Tony that Mishayla be baptized before her surgeries.  Tony was also raised a Catholic, and still very much a believer in most of the church's teachings.  He told the minister he wanted his sick daughter baptized, and planned on having this done before her surgeries this morning.

"Oh, I don't think you or you wife are ready for that. You have to accept Jesus Christ into your heart before you can bring it to your children.  I suggest you wait until she is older."

I don't remember how Tony replied to this.  Of course he didn't agree with this at all.  This child was going to have life-threatening surgeries. She could die.  Why would we wait?

I was discharged, and we got in car.  During the drive, Tony asked me "What was the matter with that guy? How could he believe we should wait to baptize a sick baby? 

I had done this intentionally.  I had waited till we were gone from the hospital to tell my husband what the guy said to me, that our newborn daughter, who was ill and had a disability, was basically a demon.

I will not repeat, for the sake of what is proper, the words that come out of my husband's mouth regarding this man's opinion.  Bullshit was one of cleaner words he used. 

He was enraged, and the more enraged he got, the more enraged I got.  How unkind and unfeeling could somebody be? Okay, maybe those are his beliefs. But isn't it his job to render solace and comfort to those in peril? In need of God's love and protection? 

When we got to UCLA, they were prepping Mishayla for surgery.  Tony told the NICU nurse we wanted to have her baptized.  "No problem, that's easy," said the nurse.

Within a few minutes, Father O'Malley entered.  He was a priest at a Catholic church in Westwood, near the hospital.  We talked to him, and he was kind and comforting.  He said once she was well, if we wanted, we could bring her down to the church, and he would do a tradional baptism with family and friends. 

We stood over Mishayla, and made the sign of the cross.  The priest placed blessed water on her forehead. It was done in 5 minutes.

We thanked him for his attention and kindness.  Our daughter was taken to surgery.

Our little fighter, at about age 3

Over the years, this story has nearly become legendary in the Moore family.  Tony told his mother, who of course, was outraged.  Dorothy Roberto Moore is from a very large family, and she told all her family members, which is surely over 100 people, of this story.  Everybody knew it, everybody was mad.  I've told almost every friend I've met in the past 13 years, my college professors, everyone.

They all think it was a heinous thing to say to a mother who had just given birth to a child like Mishayla.  Where was the compassion? Where was the benevolence?  

But as Mishayla got older, I encounter these sorts of beliefs more than once.  People saying our kids are here because of sin.  One woman saw an eight month old adorable Mishayla in the library said to me "Oh, that child needs to get to church."  Every time this happened, it would make my blood boil.

I've also encountered it as an advocate as well.  Occasionally, the case workers at California's Los Angeles County Regional Center would come across a consumer's parent, who would not want our help because their church pastor had convinced the parent the child was not worthy of this help.  It was the saddest things I ever saw.  One parent asked to have one of our case workers removed when this woman tried to convince this woman that Down Syndrome was a chromosonal abnormality, and had nothing to do with God.  She said the case worker "didn't respect her beliefs."

Beliefs or madness? We all believed it was borderline child abuse.  But there was nothing we could do for a 5 year old boy, who was essentially being punished for being born by his own parent under the guise of religion.

As an undergraduate English student, I had a class called Bible as Literature.  Of course we didn't study the entire bible, but I don't remember anything like that in the bible, saying kids with disabilities were here on earth because of man's fall from grace. 

I have looked myself as well.  Can't find a thing.  Was this guy making this stuff up just to be mean? 

All these years later, I would still like to understand. 

So if any of you out there understand what this man said to me that day, I would like to know. Where are the bible passages? Where is the proof of this?

I would like to understand, because I pray this doesn't happen to someone else.  My suspecions tell me it has. 

So whoever you are out there, I welcome a dialogue.  Open up the understanding!!

If it indeed exists.

A Litany of Anomalies; A Marathon begins

Tony went to UCLA, and waited.  They did tests, they did x-rays. 

He was then sent into a conference room.  There were at at least half a dozen doctors waiting to talk to him.

They presented him with the x-rays.  These were the results; our daughter had the following:

Esophageal atresia/Tracheoesphageal fistula

A disorder of the digestive system in which the esophagus does not develop properly.  The upper part of the esophagus did not connect to the lower esophagus and stomach.  The top end of the lower esophagus connects improperly to the windpipe.  This connection is called a traceoesphageal fistula. 

Mishayla was clearly very small.  They could probably repair the fistula, but connecting the esophagus would be tricky.  The surgeon was not sure there was even enough tissue to connect one end of the esophagus to the other.  They may have to wait till she was older, meaning she would be fed through a feeding tube for quite some time, if not the rest of her life.

Only about 1% of children with Down Syndrome have this.

Duodenal atresia

This is a condition in which the small bowel did not develop properly.   It is not open, and nutrients (food) cannot go through the body.  In other words, there is a blockage.  It is thought possibly this occurs because in fetal development, the bowel starts out solid, and as the fetus grows, it becomes tube-like for passage of nutrients and waste.  Mishayla never got her "tube."

This would have to be removed or she would not survive.  Bowel anomalies such as this in children with Down Syndrome run about 12%.
 
Ventrical Septal Defect 


Ventrical Septal Defect (VSD) is a heart defect where there are holes in the ventricles that separate the heart.  This is probably the most common congenital defect in any child, but with Down Syndrome, it's as high as 50%. 


The cardiologist was not sure she would need this repaired  right away.  It didn't seem to be affecting her in any adverse way at the moment.  She had so many other issues that were more pressing, this would could wait.

Atrial Septal Defect

In an atrial septal defect, the two upper chambers of the heart are not connected.  In fetal circulation, there is normally an opening between the  two atria (the heart's two upper chambers) to allow blood to bypass the lungs.

If the ASD does not close on its own, blood continues to flow from the left to the right atria.  This will allow blood to abnormally build up in the lungs.  If too much blood builds up, there will be too much pressure exerted on the lungs.  If this goes on too long, shortness of breath can occur, and death.

This is a relatively rare condition. Again, it didn't seem to be affecting her quite so much at the moment, but it would certainly be something that would need to be taken care of in the future.

Of course, the first thing was getting the gastrostomy (the g-tube) in place, and the bowel blockage removed.  The surgeon would do that surgery in the morning. 

"Your daughter doesn't have anything that cannot be repaired," the surgeons told Tony.  "But it's not a sprint.  It's gonna take time.  It's certainly a marathon."

Tony called me.  I listened to this from my hospital bed.

All of this was beyond comprehension.  How could one little 4 pound, 12 ounce person have so many things wrong with them?

This is hard for me to admit now, but at that very moment in time, the thought went through my mind. This poor baby is going to suffer beyond belief.  Maybe it would be better if.......

I heard Tony's voice on the other end of the phone. "Cyn, I hate to say this, but sometimes I think maybe it would be better if......

It was like he read my mind.  Neither one of us wanted to admit what we were thinking.

But I couldn't give up that easily, couldn't give in.  I had carried this child through four months of pain and struggle.  And she had survived.  She and I had fought together to bring her into this world, into life. I couldn't do it.  I couldn't say it would be better if.

"I know, Tony," I told my husband.  "I know what you are saying.  But didn't the doctor say they could fix everything?"

"Yes," he said. "That is what they are saying."

"Well, then, let's give them the chance.  Let's do everything.  Let them do everything they can."

Let's start the marathon, and let's win it.

UCLA Medical Center Photo Album

Our UCLA Medical Center photo album.  A place where we spent 2 months waiting for our daughter to get better.  It was also the place where we began this amazing journey.  This page is dedicated to the extraordinary doctors and nurses that gave us our daughter.

Here, Mishayla had surgery to correct a tracheo-esphageal fistula, a duodenal atresia, and an esphageal atresia. She had attacks of bradycardia and would stop breathing.  She would be fine one hour, the next minute slipping away from us.  It was a grueling, heart-breaking, gut wrenching experience, and at times it seems unsurvivable, insurmountable. 

 But living it taught me the value of life, and love, like no other.