Tag Archives: autism

The Park Bench

Posted on by tenaciouscee

Every day while I sit in my car waiting for my daughter to be dismissed, I do my best to avoid looking into the park that is next to her school. I don’t like to watch the perfect little pre-schoolers running and playing in the playground while their mamas sit and chat on a nearby bench. It always looks so easy for them from the outside. So… normal.
I never knew what that felt like. By the time my daughter was old enough to play in the park, I had a demanding newborn to attend to. I don’t remember ever sitting on a park bench calmly watching them, even after they got a bit older. I always maintained eagle eye focus, ready to leap to their aid in a nanosecond. Ever vigilant and awaiting that spark in my son’s eyes that signaled he was about to run out of the playground and into the street. I never had time for easy chit chat with anyone. That’s not a bad thing necessarily, as I find it tedious and painful, but having the option would have been nice. To have had a choice.
I’m angry and sad most the time that none of this is easy. It’s a rare day that I’m not trying to put out a metaphorical fire for one or both of my children. It seems like even when things are sailing along, a torpedo strikes us out of nowhere. I always feel like I’m on high alert and at times, it’s overwhelming.

A week ago, Sunday, my son came to me and said that his mouth was hurting him.
He never complains of pain. Ever.
As all of his baby teeth have needed assistance from the dentist to come out because of their extraordinarily long roots, I’m always looking inside of his mouth. I’ve rarely looked at the base of his gums in the front. When I pulled his bottom lip forward to visualize the source of the pain, I nearly fainted. I was able to see the entire root of his permanent front tooth. The other secondary teeth were pushing it out of his lower jaw. The root of the permanent tooth was barely contained by the thinnest sliver of gum tissue.

I made an emergency appointment with the dentist for the next day. After a brief exam and an X-ray, she knew the problem was too big to manage with just a shot of anesthetic. He needed an oral surgeon to remove two teeth- one on the bottom and one on the top as well.
We went straight to the oral surgeon and scheduled the extractions for the following morning. Thankfully the surgeon allowed me to hold my son on my lap during the procedure. I was able to feel his breathing and watch his heart beat and oxygen saturation on the monitor. My son is such a brave little guy and within minutes, thanks to the IV sedation, both teeth were out.
Unfortunately that wasn’t the end of the story. We needed to take him to an orthodontist the very next day. Three different dentists had previously mentioned that my son would likely need a palate expander to make room for his permanent teeth. The orthodontist we saw disagreed. He also looked like he was about fifteen years old so I’m seeking another opinion. While I surely don’t want to put my son through that torture device, I don’t want him to lose his teeth either. Once again I have to make an awful decision and second, third, and fourth guess myself.

I’m tired. I’m so very tired of making difficult decisions.

If that were the only issue I could focus on, it would be a lot simpler. As life dictates, it’s not. Our boy is also currently finishing up testing with another specialist to find out why he can spell a complicated word, can write that same word, and yet can’t read that word. The doctor believes that he suffered a small stroke during his delivery.

A. Stroke.

We get the results at the end of the week along with a plan to scaffold his learning with additional supports. I don’t have a clue as to what those supports might be. I still haven’t processed the possibility that my perfect little baby quite likely had a stroke caused by an incompetent obstetrician during delivery.

My children are my life. I would walk through a hungry lion’s den on fire for them. I don’t have a single regret about having them. I love them more than I ever thought I could love anyone. They are my reason for living.
Once in a rare while though, when it gets to be so hard and there doesn’t seem to be an end in sight… there isn’t much I wouldn’t give to be one of those mothers on the park bench.
Just for one worry free afternoon.

*** I completely suck because my daughter’s birthday post is still sitting in my draft folder, unfinished. It will be completed shortly. It was too wonderful to not write about (see? I’m not always misery and pain, I promise). ***

Nine

Posted on by tenaciouscee

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Yesterday morning, my little dude jumped into my bed and greeted me by accidentally slamming his skull into my nose while I was still asleep, jolting me instantly awake. It was an appropriate metaphor for how he arrived into the world on the same day, nine longshort years ago.

It was a most wonderful ninth birthday. While he still had to attend school, it was far from a regular academic day. The entire third grade was participating in a “Dances of the World” exhibition. Nine years to the day after my baby was born, he was dancing in a show with the entire third grade! Despite missing an entire week of practice due to the flu, he did great! He sang the songs and danced all of his steps in perfect harmony with his classmates. His Daddy and I were so proud.

After the show, all of the parents were invited to a buffet lunch with all of the third graders. It was extremely crowded and very loud so after snatching a few sweets, we headed out into the hallway to sit in a calmer environment. My little pal crawled into my lap to rest. He had definitely earned it. I’m more than happy to have him in my lap any time he wants to be there. I know that the days that he will be able to fit on my lap are numbered and I wish I could freeze time, just for a little while. Here, in my arms, he is safe and protected. It’s calming for both of us.

His dad and I were able to join him when he and his friends headed back to the classroom. We brought cupcakes and sang happy birthday with his friends and wonderful teacher and para.
We watched (from across the room) as the class made special gifts to surprise their families with for Christmas.

When we arrived home it was gift opening time! The Hess helicopter, a Lego set, some books, and the long awaited Nintendo 3DS were waiting for him. His requested “favorite” dinner (a cheese quesadilla) and his favorite ice cream with nine candles in it (he was definitely “caked-out” at this point) finished off the day.

We are so blessed to have this little boy in our lives. He is funny and kind, smart and creative. He loves everyone he meets and charms all he encounters with his toothy smile.

Raising a child with autism comes with some tremendous challenges. Our kids learn and interact differently than typical children but they aren’t any less loved. They aren’t any less miraculous. My little boy danced his heart out on that stage and the thing that stuck out to me the most was how easily he blended in with everyone else. He fit perfectly into place with every other typical third grader.

Today especially, I feel incredibly blessed.

Happy Ninth Birthday, baby! We love you!

Catharsis

Posted on by tenaciouscee

I’m tired of the bullshit.
I’m tired of the lies.
I’m tired of the phony smiles that come with dagger eyes.

I’m sick of people in our lives
Who try to knock us down.
I wish things could better
But I end up as the clown.

I wanted so much more
For the children that I have.
I wanted unconditional love
To be a healing salve.

I wanted to know laughter,
Happiness, and joy.
But instead we just hear criticism
Tossed upon our boy.

Know that I slay dragons
I will fight you to the death.
I will make this world a better place
Until my dying breath.

You will never be permitted
To cast harsh judgement upon my babies.
For if you do, you must know this-
I shall see you burn in Hades.

You had a choice, you made it.
You only want to see the bad.
I feel only pity towards you.
You knew not what you had.

My babes are light and love and joy
And full of happiness.
You are dark and miserable
And will die of loneliness.

My girl makes this world better
With all the good she has inside.
My boy melts strangers that he meets
With his smile, bright and wide.

Understanding and compassion
Are ideas you just don’t get.
It must be awful to be you
On that, I’d surely bet.

Autism and ADD are not things
That bring us shame.
They are simply only challenges
And we will win this game.

You tell us that you love them
Then you judge behind our backs.
What you fail to understand
Is that I’m made of sharp, brass tacks.

You can no longer hurt me
Long ago you died to me.
I will not let you hurt my kids
You’ve made an enemy.

Our world is so much better
With our children part of it.
You should try to see them as we do
Instead of being full of shit.

The Schools Are Failing Our Kids

Posted on by tenaciouscee

As a parent, I’ve watched the NYC public school system change rapidly over the last few years. I’m both saddened and frightened to say that I feel those changes will be detrimental to the majority of today’s students.

Our government is so determined to keep up with the Chinese that we are forgetting that it is just not possible. The change in the school system that includes lesson plans geared towards the top fifteen percent with the hope that the rest will “catch up” is a disgrace. Unlike China, we don’t have the employment opportunities for those who simply cannot keep up in the academic world. We don’t have – nor will we ever again have factories and areas of industry for those who just can’t cut it in school to fall back on for gainful employment. Our labor laws and minimum wage salary have priced us right out of a production industry and there is no going back. Those in Washington who are trying to sell you a different story are LYING to you. Don’t believe them.

So what IS happening inside of our children’s classrooms these days?
Well, for starters, our children are expected to know how to read basic picture books by the end of kindergarten. They will also soon be required to sit for mandatory state testing. Those who cannot keep up will be held back. Kindergarten has always been optional. Now parents are seeking out academic programs for their three year olds in the hope that they can keep up by the time they are five. How wonderful to discover a fear of failing at the tender age of FIVE.

Fiction is also being phased out in favor of non fiction. The theory is that since most of what we read in our adult lives is theoretically non fiction, we no longer need an imagination. Our children will no longer require the creativity inspired by great authors such as William Shakespeare, F. Scott Fitzgerald, J.R.R.Tolkien, Lewis Carroll, and of course Dr. Seuss. We are raising robotic, literal minds now. Check your creativity at the door, please.

What was once ninth grade mathematics is now fourth grade algebra. Buckle your seat belts, parents. You are embarking on Mr. Toad’s wild ride.

So what might happen to our children when faced with insurmountable pressure? Well, we will have to just wait that out but I have a few predictions…

1. Burnout.
Our children will be under so much pressure to succeed that only the most competitive will do well. Many of the rest will find themselves so stressed that by the time they are ready for college, they will be too exhausted to attend. I also fear that the drop out rate will increase as a result.

2. A World With Less Beauty.
How can we ensure the future of such things as visual art, music, dance, theater, and literature when we teach our children that those things are nothing more than extraneous variables?

3. An Expanding Lower Class.
Without extra help and expensive tutoring, many of our children will be lost in the educational cracks. What happens to those kids who can’t succeed in high school and go on to college? They surely won’t be able to qualify for most jobs. Most civil services jobs now require a college degree. How are individuals who struggle with their education supposed to gain employment in civil service? Quite simply, they won’t. Then what?
No cops.
No firemen.
No paramedics.
No transportation.
No sanitation.
No parks.
THAT’S what.

Our education system has been broken for a long time but these new developments have it spiraling downward at warp speed. The control group for this educational experiment is OUR children. As parents, we need to be the change. We need to insist on change. Our children deserve that much. We need our voices to be heard in unison because pressuring our kids like this is not the answer to our economic problems. Our kids deserve to enjoy the process of learning. They should be filling their minds with possibilities and stretching their imaginations. After all, weren’t some of the world’s most innovative discoveries imagined first? What happens to our future when we crush that at such an early age?

I don’t have the answers on how to fix these problems. I have some ideas but it will take more than just my voice to make a change. We need to join together for the sake of our children and their future. I’ve spoken off the record with teachers who agree with me about everything I have posted here. If you agree, start a discussion of your own with other parents. Get more on board with this. We have the power to change things if we come together to make it happen. Let’s make our voices heard so that all of our children will have a bright and successful future.

Tonight

Posted on by tenaciouscee

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Some days are just difficult.

Some days I’m forced to pull my head out of my own ass and face the fact that my little boy won’t always be little.

The days are going by quickly. The baby that was placed into my arms will soon be out of grade school and forced into a world where I might not always be there to protect him and keep him safe.

He will be pushed into society and forced to fit in or… Or what?

It’s the unknown that keeps me up night after sleepless night.

Will he have friends? Will he find someone to love who will love him back? Will he graduate high school, go on to college? Have a career? Have a family? Or….I can’t even bring myself to write the words to describe all of the *other* possibilities.

Tonight my little pal had a hard time sleeping because I stupidly allowed him and his sister to watch Goosebumps. He crawled into my bed, and put his little arm around my neck. Then the questions came…
“Mommy? Will you love me forever?”
“Of course.”
“Mommy, can I live with you forever?”
“Umm, well one day you may want to try to live in your own house.”
“Mommy, will I get married?”
*sucker punch*
“Do you want to get married?”
“Yes! And I want to have kids!”
“You do?” (interesting because he loathes babies).
“Yes! I want three boys and two girls!”
(In my head- One in eighty eight today. Dear God, what will the stats be then?)
“You want FIVE children?!?! Wow!”
“Yes! and I want you to live with me!”
(Of course. Built in babysitting. Uh huh. This kid is SMART!)
“How will I fit in your house with your wife and five kids?”
“You just will. Because I love you.”
He loves me. This little angel really does love me. I know it in my soul because for the first three years of his life he hardly seemed to even care who I was. But now? Oh HOW he loves me. It’s my oxygen.

I told him I loved him too and it was time to go to sleep. He fell asleep holding my hand.

Those questions he asked? Those are the same questions that keep me awake all night, every night.

Too often, many typical parents take for granted that their child will grow up, graduate from college, start a career, get married and start a family. That’s how life is supposed to go, right?

Parents of kids with special needs don’t take anything for granted. Every single word out of my son’s mouth is a miracle. Every thought, story, and idea he creates is A Gift.

Tonight I will try to squash the fear that is ever present in my mind and celebrate all that my little guy has become since they placed him in my arms not too long ago. He has come so very far. Instead, I’ll be awake because he’s snoring and I just don’t have the heart to put him back in his bed.

Tonight? He stays here with me. Safe and protected.

I Hate Being Right

Posted on by tenaciouscee

Yes. You read that correctly. I wrote “I Hate Being Right”. Well, ok. I exaggerated a little. I hate always being right about people. Since I was a kid, I have possessed the ability to read someone accurately within ten minutes. I have never been wrong, either. Well, I have gone against my gut and tried to see the good in someone only to learn that I should have followed my instincts from that first tingly meeting. Unfortunately, family is not exempt from my ability, although being wrong where they are concerned is a lot more painful.

If you have read my “Vicious Cycle” post, you know that I didn’t grow up having a rose colored childhood. My shades were definitely more of the black and blue variety. Shortly after my father died, my mother took me to see Saint Patrick’s Cathedral in New York City. She told me that if I made a wish when I entered a new church, it would come true. Since I was still drinking the holy water catholic cool aid back then, I stupidly wished for my father to come back to life. Naturally, that didn’t happen so I started wishing for something a little more possible. I wished for a family.
A REAL family. The kind you would see on tv in a 30 minute show. Sure they’d have problems but nothing that couldn’t be fixed at the end of the program and all was well again. Everyone loved each other and there was always a happy ending, right? Yeah. Not real.

My mother severed all ties with my father’s family after he died. Then she reunited with her long lost family- a bunch of narrow minded, right winged, racists. I did NOT fit in there at all. In addition to being an only child, I was the only cousin in my age range. I was too young to sit with the cool teenaged kids and too old to be one of the adorable, doted on toddlers. It’s not fun to feel like an outcast in your own family but over the years I tried ( despite my radically different opinions) to fit in. I bit my tongue a lot and stayed quiet as a church mouse at most get togethers. As I got older and graduated college, I became more accepted by the older cousins because I loved to travel and participate in adventurous things. I gained a little of their respect and tried again to form a bond. My cousin Mark took that as an invitation to stick his tongue down my throat one Christmas Eve Needless to say, ties were severed.

The day I married my husband was unquestionably the happiest day of my life. I was happy for so many reasons but one of the biggest was I felt like I was finally getting the family I had so desperately wanted. My husband had an older brother and an older sister and I was so excited to accept them as my own siblings. Unfortunately, that didn’t work out quite the way I had hoped. My new parents in law were the loveliest people. They never once made me feel unwelcome in their home. I have always felt close to them since even before my husband and I married.
Unfortunately, that closeness didn’t carry over to the rest of his family. My brother in law and I have a lot of similarities. I get him. He’s different, quirky, and likes to push buttons as well as envelopes. He is brilliant and funny and unpredictable. When he is “on” , there is nobody I enjoy being around more than my brother in law. And now, his new wife.

My sister in law however, has been a constant enigma to me. When I was pregnant with my first child, she threw my baby shower. I named her as my daughter’s godmother. I thought of her as one of my closest friends. I was overjoyed with the thought of finally having the sister I had always wanted.
When she found a boyfriend however, all of that perceived closeness instantly evaporated. She disappeared from our lives. I was left sad and frustrated. Where was this person who came over and visited weekly? Where did my daughter’s aunt run off to? I tried calling her to talk about it, I even cried to her about it (hello? I don’t cry, people. Not in front of anyone, ever). While the relationship never really got back on track, it waxed and waned and I accepted it for what it was, friendly but distant. It was ok. Until she ended her nearly ten year long relationship. Then she was over at my house weekly again, offering to watch the kids, hang out, even stopping over on weekends to take them to breakfast. The kids LOVED it. They soaked it up like little sponges.
(can you see where I’m headed with this? Because I called it three months ago).
Now she has a new boyfriend. And she has once again disappeared. I’m fine with it frankly because I know the drill. This ain’t my first rodeo with this woman. However, this afternoon my son asked me a question that I found myself too raw to answer.

My innocent little boy asked, “Doesn’t Aunt J. love us anymore? She never comes around to see us.”.

How do you answer that? I hate lying so I answered as truthfully and protectively as I could. “Of course she loves you, she is just busy right now.”. Then I went into distract him mode and put on a video game as fast as I could.

I should NOT have had to answer that question. It never should have had to been asked as far as I’m concerned.

Long ago I gave up ever having the ideal version of a loving extended family. I will never have that. After my mother died, I cut ties with her family. I felt no need to pretend anymore and I surely didn’t want to subject my children to some of their bigoted ideas. Now that my child has autism, I’m even more thankful they aren’t around. I can only imagine the comments I would have had to deal with.

A parent always wants more for their children than they had. I gave my kids even less family than I had when i was a child. It breaks my heart that my little boy, who is thankfully oblivious to most things, feels like someone he adores no longer loves him. My daughter says nothing, though I’m certain she shares some of her brother’s thoughts about this.

As their mom? My gloves are off. I’m done playing nice. You hurt my child and you have made a grave error in judgement. I’m done giving out second chances. You don’t get to pop in and out of my children’s lives on a whim. You’re in or you’re out.
You know who you are.
It’s time to make a choice.
I suggest you make the right one.

Buckle Up!

Posted on by tenaciouscee

When your child has autism, the successful completion of even the smallest task is cause for a celebration. There are no small accomplishments in autism world.

It’s with tremendous pride that today I can shout from the rooftops that my son, at age 8 1/2, has learned how to properly put his seat belt on!!!

To a typical parent, that is probably one of the silliest sentences they have ever read.

To an autism parent? It is HUGE.

That one seemingly small action is the direct result of not hours, but YEARS of visual learning, occupational therapy, physical therapy, and motor planning coming together. An autism parent understands and appreciates all that it took for everything to come together for my boy to perform that one task. You see, we know that one task is broken down into so many tiny parts and they all need to be done in perfect sequence for that “one” action to be completed successfully. Years of therapy have taught my son how to reach across one side of his body and pull the seatbelt down long enough to reach the buckle. He had to know the correct way to slide one part of the strap under one part of the seat, untwisted, and then he had to know to take both straps and slide them under the other side of the seat to click the buckle together.
Then he needed to pull the lap part of the belt tightly so that it was safe and secure.
For the record, I know adults who still don’t put their seat belts on correctly. My son can now teach them a thing or two!

He started asking me a couple of months ago if he could try putting his own seatbelt on. Now, if you know anything about me at all, you know I am a safety freak. Too many years spent treating trauma victims in the ER turned have me into Sergeant Seatbelt. I don’t care if you are two days old or one hundred and two years old- if you don’t wear your seatbelt, I won’t move the car. So when my little boy asked if he could try to put his own seatbelt on, I was simultaneously thrilled and terrified. But I let him try. Today, I knew he really had this task conquered when I noticed the strap was twisted – and so did he!!!! Without me having to say a word, my little guy said “oh wait- hold on a minute” and unbuckled, untwisted, and re-secured his seatbelt. I watched silently as he pulled it snugly across his lap, looked up at me and said “let’s go, mom” with a huge smile on his face.

There are no small accomplishments in autism world. They are all huge because we know how hard our kids have to work to be able to do what most others take for granted. This was indeed cause for a celebration, autism style… we hummed the Star Wars theme song the whole way home!

Memory Lane has a lot of Potholes

Posted on by tenaciouscee

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My husband has been on a photo kick lately. He has been digging up lots of old pictures and videos from when the kids were much younger. While many of the images have been wonderful to see, they have also stirred up emotions that I had mistakenly thought were buried.

The single recurring theme in every photo?… GFY autism.

The above photo was taken at my daughter’s first and last ballet recital. It was held on a stage at the local community college. We had third row seats. It should have been an incredible experience but thanks to (GFY)autism, what I remember most is the pain.

The pain my little boy felt in his ears from the loud music.

The pain he felt in his eyes from the flashing lights.

The pain he felt in his body from the show lasting nearly two hours beyond his bedtime.

The pain I felt in my heart because I had to abandon my coveted third row seat at my sweet girl’s ballet debut in favor of a seat in the last row of the theater to shield my baby boy from the sensory overload. I sat, rocking in the last row, with his ears squished between my chest and my arm while covering his eyes with my other arm to help him endure the seemingly endless torture.

Yes. I was selfish.
I refused to leave the theater.
And yes, I still have guilt about that but my daughter needed me there.

That was just the beginning of the endless internal mama battle of what’s right for one child is so NOT right for the other….

My daughter was beautiful. She was graceful. She was HILARIOUS! (At one point in another class’ performance, she darted diagonally across the stage to run to us in the audience. The entire audience “awwwwwwed”) It was pretty darn adorable. We had a bouquet of miniature pink roses waiting for her for after her performance. We had hoped to take her out for ice cream afterwards. We hope for a lot of things that just never seem to pan out thanks to (GFY)autism.

We SHOULD have been able to linger afterwards with her friends and join the celebration. We SHOULD have been able to stick around for the socializing and the photos. We didn’t realize at the time we were a group of five, not four. Our little tribe consisted of myself, my husband, my daughter, my son, and that invisible but ever present bastard (GFY)autism.

Some days, I really want to meet that effer in a back alley with a lead pipe.

My life with autism.

Posted on by tenaciouscee

I know I owe you a part two. I’ll get there but there just isn’t time right now.

All i have is this…

My life with autism is like sailing on a beautiful sunny day. Life gently rolls along until the tsunami hits you and flips the boat. You twist and spin in the tumultuous waves praying to reach the surface before your lungs run out of oxygen.

Yup. That pretty much sums it up.

Gut Instinct- Part One

Posted on by tenaciouscee

When you work as a registered nurse in a busy NYC emergency department for over a decade, you tend to have pretty well tuned instincts about certain things. When you’re a MOM, those instincts are intensified. When you combine the two… those instincts grow exponentially.

  • My pregnancy with my son was mostly uneventful. My delivery however, was anything but. Being this was my second child, I KNEW something was going very wrong right from the induction. I was a week past my due date and my OB decided to induce me. He discovered meconium in the amniotic fluid when he broke my water. Not a lot…but it was present. Instead of immediately doing a c-section, they hydrated me to the point of nearly TEN liters of IV fluid. (I counted). My son’s heart rate decellerated with each contraction. I again asked why they weren’t doing a c-section. At that point – his head was already crowning. He was sideways. His shoulders were stuck. I had a resident pushing on my stomach with all she had (as in her feet were off the floor and ALL of her weight was on my abdomen AND my baby) to get his shoulder under my pubic bone because not only was he trapped there, but his umbilical cord was wrapped TWICE around his neck. Before this party began, I had to insist that because I was group B strep positive, I demanded to be treated with prophylactic antibiotics to protect my baby. THAT was the moment that I became his advocate. I haven’t looked back since…

From the first time I held my son, my gut instincts started buzzing. I felt it. I knew something was not quite right. Sure, Nick had ten wrinkly fingers and toes and looked perfectly normal on the outside (with the exception of the mottled purplish full head bruise that was present from his neck up thanks to the umbilical cord). I was told by the “experts” that he was fine.

I knew better. My gut told me they were wrong. I felt it.

Fast forward three weeks and the cough and congestion began. As did the daily trips to the pediatrician. Literally. We went daily. For nearly two weeks. Since I was an RN, the pediatrician knew I could be relied upon to administer meds and observe my sick infant so we kept him out of the hospital for that time. In the meanwhile, we saw a pediatric cardiologist to evaluate the new onset of a heart murmur (thankfully it was benign and he has since outgrown it). We saw a pediatric orthopod for the shoulder dystocia thanks to the resident who nearly broke his shoulder so that we could get him out. Did I mention that I also had a two year old in tow for every single visit? Yeah. Good times. Except not.

After two weeks of daily doctor visits, Nick’s condition worsened. At week 5, he developed a fever. I lost it. I knew fever in infants meant spinal tap and hospital admission. It meant needle sticks and pain. It meant exposure to godknowswhat and possibilities of a nosocomial infection. But parenting isn’t about taking the easy way out. It’s about doing whatever you HAVE TO DO to help your child. No matter how hard it is to watch. So…I threw a set of clothes and my toothbrush into a bag and left for the emergency room.

Right one cue…needle sticks, IV access (not fluid), x-ray, blood tests, urinary catheter, and then the dreaded spinal tap. They tried to kick me out for that one but I told them I wasn’t going anywhere. The nurse protested – she literally stomped her foot and scolded me like a child. I laughed in her face. I wasn’t leaving. Needle stick after needle stick after needle stick after needle stick after needle stick (yes FIVE TIMES) they MISSED. I demanded they stop immediately. The attending physician tried to explain how important it was that they get a sample of spinal fluid. Fine. I stuck a deal. ONE more try by a neurologist ONLY and I hold my son during the procedure. Not that idiot nurse who stomped her foot at me. Mission accomplished. Sample obtained. Antibiotics started. As did the diarrhea. Cue dehydration and admission to hospital room.

Intravenous fluid started after I stomped MY foot because my baby with diarrhea was now not nursing either. He was becoming paler and looking sicker and yet NOTHING more was being done. I gave him drop by drop of formula in hopes of getting SOME nutrients into his tiny little body. (Oh yeah – forgot to mention… that diarrhea he had… that took care of the first set of clothes that I had on. I was very happy that I remembered to toss an extra set in a bag). I awoke the next morning just in time to see my child stop breathing and turn grey. I did what any parent would do. I screamed for help. LOUDLY. The floor nurse managed to stimulate him enough to get his breathing started again and his color returned. They tried to give him oxygen but nobody could find the regulator to stick into the wall to even attach the oxygen. Nice. I then insisted on a device called a pulse oxcimeter to be attached to my son for the duration of his hospital stay. A pulse ox takes constant recordings of heart rate and oxygen level in the blood and alarms if the level goes below a certain number. I insisted on a pulmonology consultation. I was a walking, breathing pain in the ass until I felt that my son was receiving the proper care in that hospital and I refused to leave until I was given oxygen and a pulse oxcimiter for my home. We left after a five day admission…

To be continued…