Wishes

M was about four years old when he was able to truly walk; when he could walk a short distance without falling or needing his wheelchair. It was winter time and he had become bored with his traditional therapy sessions.  His physical therapist suggested it might be more enjoyable for M if we moved out therapy sessions into the mall.  The sights and sounds of the mall environment might be a good motivator for M.  He could learn to navigate walking through crowds.  He could practice stepping on and off an escalator.  The goal was for M to ambulate in a community setting.

I would take M to the mall on my own so he could practice his walking on days when it was too cold or too snowy to be outside.  We had a favorite mall we liked to visit.  M particularly loved the fountain and tossing pennies into it.  I would sit several yards away on a bench.  I would hand M one penny at a time. He would make his way to the fountain and would take particular delight as he would watch the penny splash into the water.  He'd smile and clap his hands and would then make his way back to me for the next penny.  We'd continue until he became too tired to walk anymore or when I ran out of pennies.

As I would watch him, I would remember myself as girl, tossing my own pennies into fountains.  I would make a wish with each penny I'd toss in.  Doesn't every child?  I'd wish for more wishes.  I'd wish for all the candy in the world.  I'd wish for a million dollars.   I doubted M wished on his pennies, so I would make wishes for him.  Wishes for health.  For a good life.  For people to always love him.  Every time he'd toss in a penny, I'd wish for something wonderful for him.

One particular day we were at the mall, on our bench tossing pennies into our favorite fountain, when an older lady sat next to me.  She didn't say anything, but I could feel her watching us.  

Finally she spoke;

"He is a blessing, you know.  You should be thankful."

As a mother of a child with special needs, I have had quite a number of "he's-a-blessing" conversations with perfect strangers.  They don't bother me.  

""Yes, he is."  I told her. "He's a great kid."

She continued, "You know, I have a boy too.  But he grew up.  He met a girl when he was in college and got married and moved away.  He has his own family now.  You are the lucky one.  Your boy will always be like a child.  Your boy will never grow up and leave you.  Your boy will always be with you."

I didn't know how to respond.  I know this old woman meant no harm by her words and I could feel the pain in her voice as she spoke.  I have wished and prayed and hoped for many things for M, but never once have I wished for this.  I would gladly give away all my pennies if my son could grow up and someday have a family of his own.

Fear.

It was difficult to witness M, laying on the bathroom floor in his yellow Sponge Bob pajamas, having a seizure.  I've never felt so helpless, so alone, so terrified. I've replayed the image in my head over and over. I can't make the image go away. I think the Sponge Bob pajamas he was wearing will serve as a constant visual reminder of today.  I'd throw them out, but they are his favorite.  Today he was given an orange and green stuffed mouse by the paramedics in the ambulance.  I added it to the ever growing collection.  Most of these lovies have some sort of connection to a hospital or illness.  Most were acquired during hospital stays and ER visits and as part of  post-surgical get well wishes.  Frankly, there are far too many.

I am exhausted, but I am afraid to sleep.  I am afraid to take my eyes and ears away from M.

Today Miss J asked me, "Mama, when God made M, do you think He just took random, leftover parts and just threw them together?  Because M is a pretty mixed up kid if you ask me."

Do I tell her I have been wondering similar things myself?  

911

Yesterday we brought M in to the pediatrician with a high fever and vomiting.  M was sent home, slept most of the day away and felt well enough to sip Sprite last night.  By 7pm  he'd fallen asleep for the night and slept solid until 7:15am this morning.

He awoke and emerged from his room, slightly unsteady on his feet.  He said he needed to use the bathroom and asked me to hold his hand while he walked.  We'd almost made it into the bathroom when M went limp and began to fall to the ground. Since I was already holding on to him, I was able to grab him before he hit the floor.  His body stiffened, pitched forward and he began seizing.  His face was sheet white, his eyes rolled back, arms and legs jerking and M gasped for breath.

I screamed for Mr. A and woke Miss J in the process.  She ran into the bathroom and witnessed  her brother's seizure. Mr. A ran in and took M and laid him on his bedroom floor.  I dialed 911.

I knew at the onset that we were dealing with a seizure.  M's prior seizures were all focal seizures;  his eyes glaze over and he stares into space and then falls into a deep sleep. This was the first time he'd had a seizure that involved his entire body jerking.

I talked myself through it.  Stay calm.  Call for Mr. A.  Lay M on the floor.  Call 911.  In my mind, I knew exactly what to say.  I knew what to do, how to react.  However, as I tried to dial 911 my fingers couldn't work the phone.  I could hear the panic in my own voice as I gave the information to the operator.  It was my first time placing a 911 call.

The seizure didn't last long at all, a minute, perhaps.  It felt longer though.

The paramedics arrived within a few minutes.  I immediately recognized their faces.  They'd brought the fire truck to our block party a few months ago.  I have a photo of M with a big grin on his face posing with the firemen in our front yard. They remembered M.

They loaded M into the ambulance.  I rode with them.  They took vitals.  They asked M questions.  They gave M an orange and green stuffed mouse to hold on to. They called the hospital to let them know to expect us in ten minutes. M looked pale and frightened.  I probably did too. It occurred to me that I had not brushed my hair or my teeth.  I threw on whatever clothes were closest and I was terribly mismatched.  I remembered to grab my purse but forgot to take my coat.  I didn't really care.

We arrived at the hospital.  An IV was started.  Blood was drawn.  Urine sample collected.  M was dehydrated and feverish.  His nurse was patient and kind, both with M and with me.  The ER doctor examined M and asked him questions.  M's speech was garbled and his answers made little sense.  M told the doctor he had to fasten his seatbelt.  He told him that the car lights were bright and the noise was loud. He said he was seven and in second grade.  I realized then that M was recalling his ride in the ambulance and was, just now, giving the answers to the questions the paramedics had been asking on the ride to the hospital.  The ER doctor said that this was normal and expected behavior following a seizure.  M's brain was just coming back "online" and needed time to reboot.  He said he should be fine within a few hours.

After a while, M was given apple juice and a cherry popsicle.  In the end, as we had figured, it was determined that the stress of the fever/dehydration/viral infection was too much for M's body and it had induced the seizure. We were given our discharge papers and follow up orders and were allowed to leave.

While I was sitting in the ER with M, Mr. A had taken Miss J for a walk around the hospital to stretch her legs.  He'd stopped at the gift shop and had picked up a newspaper for me.  I read a story about a nine year old Indiana girl who'd been murdered and dismembered by a convicted sex offender. Just nine years old.

As lousy as today was for us, we have little to complain about and so much to be grateful for.

Rough Day

My parents came to visit for Christmas.  I insist they stay with us, but they always opt for a hotel.  For their entire visit, the kids like to stay with them.  Miss J and M love sleeping at the hotel and swimming for hours in the  indoor pool.

My mom brought the kids home last night and told me that M had wet his pants.  This is rare and it usually means that something is brewing.  I noticed that his gait was off and he was falling down.  These two things happening together usually mean that M is getting sick.

M, normally an early riser, slept until 9am this morning.  He woke, called for me, and threw up.  As I peeled off his pajamas, I could feel the heat radiating off his body.  I took his temp:  103.8.  He threw up again and I knew that getting Tylenol into him was not happening.  I called the pediatrician and put M in the car.
With M's kidney disease, he is at an increased risk of dehydration.  When he vomits, he has to be seen by a doctor.

I drove to the office with one hand on the wheel and one arm reaching into the back seat holding a large bowl for M to vomit into.  Each time he'd vomit, I'd pull over and dump the bowl.  It took twice as long to get there as it should have.

M managed to walk into the office, but upon his arrival, he laid on the office floor.  Thankfully he was taken to a room where he quickly fell asleep.  The doctor examined him.  I'd gotten him there soon enough that it wasn't necessary to go the ER for an IV.  Instead he got a shot of an anti-nausea drug in the butt.  He yelped, but he was just too sick to really care.

The drug made him drowsy but it enabled us to get some Tylenol into M and M managed to sleep for four hours straight.   When he awoke at 6pm, he was able to sip some Sprite.  So far it has stayed down.

While M napped, I armed myself with bleach and lysol and cleaned the entire house.  Mr.A took Miss J to a movie.

I just really hope it passes soon and spares the rest of us.

Kidneys.

The phone rang the next day with the results of M's tests.  I was summoned to the hospital to discuss the results. Good news, I know, can be delivered over the phone.  The doctor calls, tells you that everything looks great, and to have a nice life.  Simple.  I knew that if I was being asked to come to the hospital, this wasn't going to be a simple answer.

M's infection was clearing, which was good.  The not-so-good news was that M did need surgery.

We learned that M's enlarged bladder was of concern.  It held three times more fluid than it should.  This sounds convenient, but it is not good.  A large bladder that holds more urine increases the likelihood of bacteria growth.  Excess fluid in the bladder means more to backflow into the kidneys and more pressure on the kidneys, thus causing more damage.  It means that the stretching of the bladder damages nerves.  Other tests showed that M wasn't fully emptying his bladder, which could be a sign of existing nerve damage.

For this we would have to have M empty his bladder every two hours in an attempt to shrink it.  Imagine a stomach...the more food you put in it, the more it stretches.  Put less food in it and it shrinks.  It is the same with the bladder.  If less urine stayed in the bladder, it may shrink.  If this did not work, we would have to catheterized M several times a day at home.

The enlarged bladder explained why M had been so easy to toilet train.  His huge bladder and damaged nerves allowed him to hold his urine for hours on end.  Once his bladder filled up, urine back flowed to the kidneys, which became a reservoir of sorts.

Additionally, we learned that M was not concentrating his urine. Whenever he peed, his urine was the palest yellow, almost clear.  The scar tissue in M's kidneys had made them inefficient at filtering.  We were warned that this put M at a higher risk for dehydration.  If M were to have diarrhea or vomiting, we were to take him to the ER for IV fluids.

The tests had showed that M's right kidney had not grown at all.  It was underdeveloped, atrophied and flat.  It was believed to be non-functioning. The left kidney, working overtime to do the work of two, was swollen and larger than normal.  The lower pole was scarred.  Of M's kidneys, only the upper pole of the left kidney was functional.

He was functioning on one half of one kidney.

The good news was that the one half of the one kidney was doing enough work to keep M out of renal failure.  The little bit of kidney was chugging along and doing its job. This was a huge relief.

The doctor did say that he could possibly lose the kidney function he had.  When M had the adolescent growth spurt at puberty, the kidney may or may not be able to keep up.  It is entirely possible that M will require a kidney transplant.

Surgery was discussed. The ureters would be trimmed and reimplanted into M's bladder.  If necessary, the right kidney would be removed.

A date for surgery was set.

Back to the Mothership

The four-hour sleep-deprived eeg was over.  There were no answers for us, but we managed to put concern on the back burner.  Christmas was coming.  My parents would be arriving later that day and  I was planning a big Christmas Eve dinner. Fear and Worry were not invited to our celebration.

But sometimes, like an unwanted house guest that overstays its welcome, Fear and Worry show up anyway.  They crashed my party on Christmas Eve, 2009.

M had seemed a bit off.  I didn't give it much though...he'd had two seizures, two trips to the ER and a four-hour, sleep deprived eeg.  No wonder he looked a little shredded.

I knew something was wrong when he had wet the bed.

I know it may not seem like much, but he'd been remarkably easy to toilet train.  The entire process, from the first time he ever sat on a toilet to the point when we felt safe tossing all the diapers, was a period of six weeks.  He was trained, day and night, before his fourth birthday.  He'd never wet the bed. Until now.

I took his temperature:  99.6.  Not alarming.  I called the pediatrician anyhow and was instructed to bring M in . The pediatrician's first suggestion was to start with a urine sample. I took the plastic cup and M and headed to the bathroom. As he filled the cup, I knew we'd found our problem.  M's urine was cloudy, almost milky.  There was blood.

The urine was dipped..  It was positive for infection.

The day after Christmas we were sent back to The Mothership to see the urologist. If you have kidney disease and an infection like M had, you automatically move to the front of the line.  No questions asked. His urine culture showed considerable bacteria growth. His white count was soaring,  There was a raging infection.  This is what likely induced the seizures.

The next few days were a whirlwind of appointments, tests and procedures.

There were countless blood tests.  There were urine cultures.

There was a renal ultrasound to measure the size and shape of M's kidneys and to monitor the reflux that we already knew he had.  M had plenty of these and he knew the worst part was the sticky gel that got all over your back and stomach and made your shirt stick to your skin.

The next test, a VCUG, was harder.  For this test, M was to lay still on an x-ray table while a catheter was inserted into his bladder.  Bottles of fluid would be attached to the catheter and drained, one at a time, into his bladder.  As the fluid drained into M, the radiologist would watch the fluid on a computer monitor.  I noticed the board in the corner with velcro straps.  They told me if M could lay still, he would not have to be strapped down.  I was instructed to lay my body across M as he was being catheterized to help keep him still.

The nurse assigned to M was so kind, so gentle.  She gently stroked his hair and whispered to him, "It's okay, baby.  I'm going to take good care of you."

To me, "My boy is named M too." She pulled a picture out of her pocket of a beautiful little boy with a mop of black hair and chocolate brown eyes.  He had Down Syndrome.

She nodded  knowingly to me and turned back to M,  "M, I have to take this tube and put it in your pee-pee.  It won't hurt you, but you have to lay very still.  Can you do that for me?"

The nurse turned to me, "Does he understand?"
I looked at M and saw the large tears silently rolling down his cheeks.
"Yes.  He does."

M was unbelievably cooperative.  There was no need for him to be strapped to the board or for me to hold him down with my body.  I simply held his hand and talked to him.

The room was quiet and dim as all eyes watched the fluid travel from M's bladder up into his kidneys.

The final test, an RNC, is done in the basement of the hospital.  Radioactive dye is injected into M's bladder (via catheter, again.) and images are captured.  This test requires total stillness in order to obtain clear images and young children are often sedated for this test.

Here is the tricky part:
It was determined that this test was necessary.
It was determined that sedation would be unsafe for M due to his respiratory history.
It was determined that general anesthesia would be used.
It was documented that M had three adverse reactions to anesthesia.

Your perfect catch-22.

For the test, M would have to be admitted for day surgery.  As long as he could get out in 23 hours or less, insurance would not count it as a hospital admission.

M was prepped for anesthesia.  I was allowed to carry him to the OR and hold him until he was asleep.

M had the test and was transferred to the special care recovery unit.  Typical to M, he was unable to wake up from the anesthesia for several hours.  His breathing was shallow and his oxygen levels dropped so he was kept on oxygen. When he awoke, he was transferred to the regular recovery unit.  He would stay there until he could eat, drink and pee.  It was 7pm and he hadn't eaten since the day before.  He was hungry and ate graham crackers and apple juice.  The anesthesia was still in his system and he promptly threw it all back up.  An hour later we were allowed to leave.  They gave me  a small carton of apple juice and a vomit container for the ride home and wished M well.

The next day I would receive a phone call that would, once again, put our lives into a tailspin.

More Bad News.

M was back in the ER.  The events mirrored what had happened two days ago:  M was pale.  Eyes open, but vacant.  Awake, but unresponsive.  A deep sleep followed.

We were in a different ER this time.  The hospital staff agreed with the school nurse and felt M had been having seizures. For several hours, they attempted to get in touch with M's neurologist.  The pages and phone calls went unanswered.  We were discharged with a card with the name of a new neurologist.

We had our follow up appointment with  Dr. Brain and immediately liked him.  He carefully reviewed notes.  He spoke directly to me, and to M.  He took his time.  He asked and answered questions.  He was considerate.  He was kind.

 His first step was to order a four hour eeg.  For the test, we were instructed to deprive M of sleep and  keep him awake for as much of the night as possible. He was to come to the hospital the next day where leads would be attached to his head and brain wave measured for a period of four hours.  They would study M's brain waves and hopefully catch a seizure as it was happening.  M's brainwaves were measured while he was awake, as he slept and as a strobe light was flashed in his eyes for several minutes.

The results of the test only showed "background slowing."  It was a common finding in people with developmental delays. Diagnostically it meant little.

At that moment, we had no idea what had caused M's seizures.
It didn't take long to find out.
Before long, we were back in the hospital for an entirely different reason.
This new diagnosis was likely the explanation for the seizures.

The Mothership was calling again.

Grateful

Our adventure to the photography studio sucked the life out of me. Should I have just skipped the professional pictures?  As cute as they are, I could have just as easily printed out my own photos.

Perhaps I had lost what Christmas is about, even if for just a moment.

Recently Miss J asked me why we give gifts at Christmas.  I explained that it came from the Christmas story of the three gifts being brought to the baby Jesus.

"Then why do we buy so much?  Why don't we just give three gifts? Maybe then we would think more about the gifts we gave and we wouldn't just buy stuff for the sake of buying stuff. I appreciate what you get me, but I really don't need it all."

She had a point.

Each year our church gets together to buy gifts for senior citizens who are needy.  A tree is set up at the church will the name of a senior on a tag and an item they would like to receive.  Each year I Miss J and M pick a tag off the tree and we buy the gifts.  We've done this since they were very young.

One day we were at church and Miss J had wandered away from me.  I didn't pay much attention until she returned with a handful of tags from the tree for the seniors.  She was so proud that she had selected the tags herself and that she had written her name down on the list showing that she had committed to these people.   I began to panic a bit.  I was proud of her good intentions, but began to fear this might get a bit expensive.

Before I could say a word, Miss J said, "Don't worry mama.  I am going to buy these with my own money."  She did just that.

Thank you, Miss J.  Thank you for teaching me your simple but valuable lesson:  Expect less. Give more.

Holiday Spirit:  Restored.

All I Want For Christmas is a Xanax.

I do it to myself every year.  I have no idea why.  It is never easy.  It is always stressful.  Each year I swear that this is the last time I will put myself through this.  I am speaking about my annual Christmas photo.

Taking your kids for a holiday  photo the week before Christmas is the perfect storm for disaster. I know this.  It is my own fault.

Tradition is important to me and years ago I decided that our family Christmas tradition would include a professional holiday photo of the Miss J and M.  We decorate frames and each guest receives a framed photo at their place at the table for our Christmas Eve dinner.  Our guests consist of grandparents and a grandparent-like friend and they look forward to getting their photo each year.

Today was our appointment to have the photo taken. Miss J and M had fresh holiday haircuts.  They had new outfits to wear for the picture.  We were ready. It was going well. Until Miss J informed me (twenty minutes before we had to be out the door), that she was unable to find her tights.

 Let me explain my Miss J.   Miss J will lose anything you give her.  She cannot keep track of anything to save her life.   Also, being that she is nine years old, we are in a perpetual battle on the condition of her room.  I like neat.  I like tidy.  I like to be able to see the bed and the floor.  I like things put away in their proper place.  For Miss J, "cleaning her room" means tossing things behind the bed and bureau or cramming whatever will fit into drawers.

Tension was rising.
We were short on time, yet I found myself delivering the "How-many-times-do-I-have-to-tell-you" speech.
"Miss J, I have you those tights and asked you to put them in your top drawer.  Did you?"
"Yes, I am sure I did."
"Then where are they?"
"I don't know."
"You need to find them.  Now."
"I don't need tights. I'll go without."
"No.  You won't. Go find your tights."

I left Miss J to locate her tights and found that M has helped himself to the apples in the bowl on the kitchen counter.  Seven of them to be exact.  I found seven apples, all with several bites in them, all over my kitchen and living room. There are apple bits in M's hair, on his glasses and all down the front of his new sweater.

It gets better:

The day before, my black lab, had unwrapped every gift that was under our tree.  She ate most of the wrapping paper and tissue.  Now she had diarrhea.

Missing  tights.  Apples everywhere.  Dog diarrhea.

I am now yelling.  At everyone.  I am muttering words under my breath that I do not allow my children to say.

We have no time.  I have Miss J put on different tights.  I change M's sweater.  I hope for the best with the dog.  I load everyone into the car and amazingly, we arrive at our appointment on time.  I look at Miss J and realize she has not brushed her hair.  I fish an old comb out of the bottom on my purse and do what I can.

We are called for our sitting.  The photographer's day seems be be going no better than mine.  I am sympathetic.  I picture pushy parents and screaming children and know her job is not an easy one.

My sympathy did not last long.

The session begins.  The photographer tells me that I need to remove M's glasses, otherwise there will be glare.  I explain that 1.  M needs his glasses because he is practically blind and 2.  I want M to look like M.  Without glasses, M does not look like himself.  Photographer huffs and tells me that  now a lot of the pictures will not look good.

Point a camera at M and he will tell you, "I say, 'cheese!'"  He knows his part.  He tells the photographer this. She ignores him.  She tells M, "Stand next to J.....not that close....put your head next her hers...tilt your chin down...put your hands in your pockets....no, put your hands in your pockets but leave your thumbs out...no, hook your thumbs on your pockets....no...just put your chin down a little, don't look at the floor."  He is confused.  He has no idea what to do.

"I say 'cheese!'" M offers, happily.
The photographer is now maneuvering Miss J into position.
"Cheese?"

Clearly this isn't working.

"M might do better if we let him sit.  Miss J can sit next to him.  I'm not picky about the how they are positioned, I just want a nice smile."

The photographer rolls her eyes and agrees.  "This is as good as it is going to get," she tells me.  I go to brush Miss J's hair out of her eyes and the photographer reminds me that we don't have a lot of time.  She snaps a few more shots and announces we are done.

I send M and Miss J to play at the Lego table while I view the pictures.  I tell her what I really want is a nice photo of the two of them together, but clearly, I am not escaping until I have heard the entire sales pitch. She shows me each photo in color.  Then in black and white.  Then with special effects.  Then the montage.

M is losing patience.  Miss J is just plain bored.  I am on borrowed time.

The photographer tells me I can order a calendar, a mug or a mouse pad.

"No thank you.  I really want this picture with  this package."

M is now announcing to the patrons in the waiting room that he is ready to go home now.

The photographer continues, "But if you order that package, you won't get the complimentary CD."
"No thank you."  I am calm, but crisp.
"If you opt for this package you can get our newest product, a photo on stretched canvass."

M's announcements that he is ready to leave are getting louder.  Miss J, trying to be helpful, is talking equally loud and telling M to be quiet.

"But the canvass makes a very nice gift."
I just want to leave.  And this woman is trying to torture me.
"I don't want a canvass. You are about one minute away from witnessing my son's total meltdown.  Just give me the package I want.  Now. Please."
She finally notices M's impending meltdown and rings me up.

I left feeling utterly shredded.I want nothing more than let out a primal scream. Once again I have vowed that I will never do this again, that the stress and aggravation are just not worth it.

I glance at the photos and see the smiling faces of Miss J and M.  I think about the grandparents who will be receiving the photos as gifts.  I smile and head toward the car.

In the eyes of Miss J.

Miss J is amazing.  She astounds me.  She humbles me.

I've been mostly sharing about M and the journey we've been on with him, but tonight I feel the need to share about Miss J.

I want to share a conversation I had with her when she was just five years old. She was in kindergarten at the time.  She had studied Martin Luther King at school that January.  In February, she studied Abraham Lincoln.  Miss J is a regular Sunday School attendee and Easter was upon us and she was learning about the life of Jesus..

We'd been in the car and she was not her usual very chatty self.  She was more quiet, pensive, deep in thought.  I asked her if everything was okay.  She said she was thinking.  She told me she was thinking about the different people she'd been learning about in school and church.  We began talking about all that she had learned and how these people had helped shape our world.

I told her, "Miss J, these people did some very amazing things.  I have no doubt you will be like them one day."
"No.  No, I won't." she said.
"How can you say that?" I asked her.  "You are so kind, so bright, so good hearted.  You have amazing ideas.  I know that you could change the world."
"No, mama."

I was puzzled.  Did my five year old doubt herself?  Was she struggling with self-esteem?  At five?

"Why would you say such thing, J?"
"Because mama.  If you have good ideas, and you share them with the world...they kill you.  And you die."

I got it.  Martin Luther King Jr.  Abraham Lincoln.  Jesus.  All intelligent, outspoken, pioneers for change in the world.  All killed because of it.

This is my Miss J. This is my girl for whom I sometimes cannot find the right words for.  My girl who sometimes makes me wonder if I am worthy of her.

Genetics 2.0

When M was six weeks old  and we were inpatient at Children's Hospital, he was evaluated by the geneticist.  Extensive testing  was done....a general chromosome karyotype,  tests for specific genetic abnormalities, blood chemistry.

Eight weeks later, we received the doctor's final report. The report was three pages long.  The first page summarized the evaluation.  M's height, weight and other vitals were listed.  Individual body systems were listed, along with the words, "Normal unless otherwise noted."   Almost every body system was "otherwise noted" in M's report.

The final page read:  "Normal 46 XY Male.  Diagnosis not obvious.  Follow up in one to two years."

I was confused.  I called the genetics clinic.
"I don't understand. There is obviously something wrong with M. His report is three pages long outlining one abnormality after another. You ran so many tests, how come we don't have an answer?  Why don't we know? How can the report say 'normal' when M isn't?"
I was told that sometimes, especially with a very young child, that we have to "wait and see what he shows us."  We had to wait an see if anything new cropped up.  I'd never felt so frustrated.

He'd already been diagnosed with:
Hypotonia
Joint Laxity
Joint Hypermobility
Renal Duplication
High Grade Vesicoureteral Reflux
Enlarged bladder
Tracheomalacia
Laryngomalacia
GERD
Focal seizures
Adverse anesthesia reaction
Dysmorphic Features
Global Developmental Delay

I couldn't imagine adding more to this already long list.  Yet, by the time M was two and it was time to go back to genetics, we had indeed added more.  Much more:

M was severely nearsighted.  He also had alternating exotropia, meaning that his eyes turned outward.  He had difficulty with visual tracking.  He began wearing glasses full time as an infant.

M had developed allergies.  He had two anaphylactic reactions where his throat closed and he required an injection of epinephrine.

He'd had difficulty with tolerating cold and heat and with regulating his body temperature.  M had several episodes where overstimulating environments would cause him to "shut down" and he would fall into a deep sleep.

M had several episodes where his white cell count would unexpectedly drop.  Sometimes it would drop so low that he required daily antibiotic injections to protect him from getting bacterial infections.  For his own protection, he had to be home bound until his white count began to rise.

M began getting nasty ear infections.  His eardrums began to rupture with almost every ear infection. Infections took weeks to get rid of.  It was decided that oral antibiotics were just not working fast enough on him and he would go straight to antibiotic injections whenever he had an ear infection.

Whenever M caught a cold, it would hit him harder and last longer than it would with a typical child.  He experience difficulties breathing and would almost always require a course of steroids to help him kick the infection.

His skin was velvety soft and stretchy.  He bruised easily and cuts were slow to heal. He could dislocate his own thumbs. He had extremely long fingers and toes.

He began growing at a rapid rate.  Mr.A and I are both tall people, but M's growth is considered to be abnormal. Both height and weight were far, far off the charts.

M showed signs of having Autism Spectrum Disorder.  He began to perseverate on certain things and developed self-stimming behaviors.

He had gross motor dyspraxia, meaning that there was a disconnect between his brain and limbs making him appear quite clumsy.  His movements were ataxic; movement that should have been smooth and fluid were uneven and choppy.

I now understood what the geneticist meant when she said, "We need to see what he shows us."

We returned to genetics when M was two.  We discussed more possible syndromes.  More tests were run.  There were newer, more sensitive chromosome tests available.  We agreed to all the suggested testing.  We waited another eight weeks.

The results came back:  "Normal.  Diagnosis not obvious.  Follow up in one to two years."

I did not ask as many questions this time.  I already knew the answer:  "Wait and see what he shows us."  Science had not yet caught up to my son.

Honesty & Miracles

mir·a·cle 

noun \ˈmir-i-kəl\

an extremely outstanding or unusual event, thing, or accomplishment

hon·es·ty

 noun \ˈä-nəs-tē\  
adherence to the facts

I am on the fence about miracles.  I want to believe in them. In order for miracles to exist, honesty must also be present.  I am a skeptic.

Raising a child with special needs gives you a crash course in honesty.  Honesty is can be sweet and endearing,  but it is also frequently hard on the ears and bitter on the tongue.  Honesty  requires a growing a thicker skin.  It is never easy to hear the doctor's honest predictions on what your child may or may not be expected to do in life.  Words sting like a hard slap on your cheek, but as a mother, it is your duty to separate yourself from what you want and what is.  Honesty is having strength to make the conscious decision to do the correct thing with the information you have.

I have done my best to be an honest mother.  To be anything less is a disservice to M, and to me. It is not easy. The hardest thing for me has been  to learn to receive honest information about M's development.

I reflect back to the first appointment with the neurologist, the one who said there were no guarantees that M would ever walk independently.

I reflect back when I placed the order for M's wheelchair stroller.  The sales representative told me it was an excellent model and that it would hold M until he was 100 lbs.  One hundred pounds seemed like an awfully long way off...was it true he would still need it by then?

I recall  the Early Intervention people asking me if I wanted to order a bath lift so I would not hurt my back lifting M in and out of the tub.

I remember discussing with Mr.A if we should sell our home and move to a single story home so that we wouldn't have to carry M up and down stairs.

Bitterly honest conversations.

Other parents I knew were picking out tricycles for their kids and I was picking out a wheelchair for mine.

My friends were pushing their kids in adorable Peg Perego buggies and my kid was cruising in a Convaid.  They were able to gush over the fancy extras like the cup holder and extra large storage basket on their stroller.  I suppose I could gush that mine was "school bus ready" and complete with tie-downs, so when M went off to school we could just roll him right onto the short bus.  Oh goodie.

Other parents were enrolling their kids in swim lessons and I was contemplating ordering a bath lift for safe bathing.  Yep, it sucked.

At nearly three and a half years old, M was still not walking.  Progress was painfully slow and both M and I were growing weary of the therapy sessions.We'd had success in therapy in getting M to stand.  The therapist and I would lift him up and place him in standing position, making sure that his ankles, knees and hips were all in proper position.  We'd help him steady himself and then we'd let go. We'd count the seconds he was able to stay upright.....one....two....three.....four.....five....before his legs would give out and he'd collapse.  It wasn't just an issue with strength, there was also concern that M seemed unable to balance himself.  We did have one session of great success where we were able to get M into standing and he stayed upright long enough to manage a single step.

One particular day, M's physical therapist had come to our home to work with him. Before we got to work with M, I got out my laptop so I could show the PT a video I had found about a little girl, Teya, who had learned to walk independently at the age of seven.  The video is amazing.  The song, "Better Days", plays in the background.  To this day, whenever I hear that song, I get a little teary.

The PT and I sat on the floor and watched the video together.  M was standing against the couch next to us.

And then, out of the blue, M walked five feet to another couch.  Just. Like. That.

And then he did it again. And again. And again. And yet again.

The PT exclaimed, "When did he start this??!!"
Umm....just now.

He walked!  By himself!  I had a witness!  A professional witness!

I called Mr. A and told him that he needed to come home right away because M was walking.  I could hear the doubt in his voice.  He must have thought I'd lost my mind. I kept M walking between couches until Mr. A got home, so fearful that if we stopped, the moment would pass and M would not walk again.  He did continue to walk. In the weeks that followed, five steps became ten.  Ten became twenty.  Finally, there were so many steps that I stopped counting them.

Just maybe, this is my miracle.  I chose to believe it is.

Here is the link to the video we were watching that day.:
http://www.cuevasmedek.com/teya_mov.html

Inching along.

If you have children, then you most likely have a baby book to record all of your baby's milestones.  Perhaps you have tucked away some little momentos in the book as well...the i.d. band placed around your baby's tiny wrist shortly after birth.  A lock of hair.  Maybe even a first tooth.

When Miss J. was a baby, I loved taking the time to work on her baby book.  I wrote down every new thing she did, every word she said.  I saved every little momento.  I tucked her first drawings in her book, and then the first letters she would scrawl on paper.  Her book nicely documents those early years.

On the other hand, M's book had remained empty for quite a long time.  Partly because there were no milestones to record.. Part of it was that it was bittersweet when milestone did emerge.  They came, eventually, and were celebrated.  But they emerged so late in M's development that a certain sadness always lingered.  Avoiding the baby book was less painful.  For a long time, it lived tucked away in the back of a very high shelf in the closet.  

M's baby book has a section called "Visiting My Doctor". Most parents with typical children will record a cold their baby contracted or an ear infection.  Perhaps even a flu or roseola.  M's page reads like a medical journal.  The single page was not enough and additional pages were inserted by me.  When those were not enough I just moved all that to a three-ringed binder.

Baby books record milestones....but parents of children with special needs know that since milestones are not always a certainty.  We celebrate the inchstones.    Our children's baby books look quite different.

As parents of special needs children.....

We document head control and the emergence of visual tracking.

We document the first time our baby crosses mid-line.

We document pushing up on extended arms.

We document when they can finally side-sit and no longer W sit.

We document when our child can manage a pincer grasp or when they can place objects into a box and take them out again.
We document wrist rotation.

We document our child being able to build a tower of six blocks using one-inch cubes.

We document turning a doorknob.

We document being able to eat food without choking and drinking without aspirating.

We document when our child is able to independently transition from laying to sitting and then into a tall kneel.

We document not only how many words our child can say,  but also word approximations and how many signs s/he uses.

We document our child's use of PECS.

We document being able to correctly pick an object from a field of two, then four, then eight.

We document our child being able to follow first a one step command and then a two step command and a two step command with multiple attributes.

We document the first therapy sessions, the first pair of AFOs, the first set of Theratogs.

Do you know what PECS is?  Or AFOs or Theratogs?  If you don't, hug your child and be glad.

For many children with special needs, skills blossom slowly.  A new skill emerges and may take weeks, months or even years for it to become solid.

When M was 15 months, he figured out that he could get from one side of the room to the other with a primitive commando crawl.  It wasn't a typical commando crawl where the child uses their knees and elbows to push forward.  It was more that M would roll on his side and then would forcefully thrust his body to the other side.  In that thrusting motion,which was primarily using all abdominals,  he was able to move forward an inch or two.  He was able to travel about four feet in five minutes using that motion.  Technically it wasn't crawling, but it was locomotion.  I celebrated that M could cognitively decide that he wanted to get to an object somewhere else in the room and would use everything he had to get there.  A "true" commando crawl  would emerge several months later when he was two.  He managed a proper four-point crawl, on hands and knees with belly off the floor, at the age of  two and a half  years.

When medical professionals want to know when M achieved certain milestones, at times I am unsure of how to answer.  Do you want the age he was when the skill began to emerge, or do you want to know the age he was when a skill was mastered?

I once was sitting in the food court of a mall enjoying the rare treat of being alone.  I observed a mother holding a baby on her lap.  The baby had taken the paper placemat off the plastic food tray and was joyfully tearing the paper to bits. The baby was completely amused, the mother was not.  I could tell she was growing tired of having to bend over to pick up the bits of torn paper.

Clearly she and I saw this scene through very different eyes.

Perhaps this tired mother only saw the mess her daughter was making.  In my experience of parenting M, I was well aware that I was witnessing a neurological milestone.

Tearing paper, as simple as it may sound, is a big deal in child development.  Many neurons need to fire in rapid succession for a child to be able to hold paper steady in one hand and rip it with another.

I know this because I have spent thousands of dollars and many hours in therapy with M to teach him this.

I said nothing to the mother.  I quietly sat and sipped my coffee.

Blind Date

One day, quite out of the blue, M's Occupational Therapist set me up on a blind date.  Of course I was giddy with excitement, totally scared and nervous at the same time.  What would I say?  Will I make a good first impression?

M's OT had said to me, "I am not supposed to do this, and it goes against the rules of my job, but there is someone I think you should meet."

She continued, "There is another family I work with, they have a little boy similar to M.  They also have a daughter the same age as Miss J.  The mom is great and I think you would really hit it off and she wants you to call her.  Here is the number."  She pressed the paper into my hand.

Another mom?  With a kid like mine?  Someone to talk to?  A potential friend? 

Dear readers, let me explain the social life of a mother with a young child with special needs.  It is easy to sum up:  There isn't one. 

You are going through life, minding your own business and enjoying yourself when, BAM!, your world shifts on its axis and you are suddenly thrust into medical appointments, therapy, bills, fear and worry.  It doesn't leave much time for a social life.  You barely make time for old friends, let alone taking the time to cultivate new friendships. I  had already detached from many friends.  They hadn't done anything wrong, but simply put, it was just too hard to be with people.  I felt I no longer had things in common with my friends. None of them could understand or relate to anything I was experiencing.  At times it was painful for me to watch their children grow and thrive while the future for my son was so uncertain. I'd find myself annoyed after listening to a friend talk about some great new thing her child had done or frustrated when  friend complained how she had little sleep the night before because her child was up with an ear infection.  I felt my friends could only watch me break down or listen to my complaints so many times. I was tired of repeating the latest news with M.  I was worn, weary, tired.  I had little energy and felt I brought little to the proverbial table. I had taken, but had nothing to offer.  I was swimming in my own chaos and could not return the favors and generosity that had been showered upon us since M's birth. Deep inside I was ashamed of the changes I had allowed in me.  I loathed myself. Through no fault of those nearest and dearest to me, I pulled away.  It was never about them.

So now here I was, with a phone number in my hand.  I dialed.  She answered.  We made small talk.  She invited me to her house so we could meet, face to face. I was in the backyard with Miss J while I was talking to her and took down her address with a piece of chalk because I didn't have a pen.  I wrote on the concrete patio and it had rained later that day, erasing the address. I called her  for the address again.  

She told her daughter, Miss A. all about Miss. J.  I told Miss J. that she would soon go play with Miss. A. My M and her son L were too young to understand the significance of their meeting, but we mothers held enough excitement for both of them.

The day of the blind date arrived.  I pulled up to K's house and Miss. A was standing on the front steps, jumping up and down saying, "You're here! You're here!  You're finally here!"  As I was struggling to free M from the car seat, Miss J bolted out of the car and over to Miss A.  The girls ran in the front door, through the house and out the back door to Miss. A's backyard and up into her playhouse. 

I rang the doorbell.  She answered.

"Umm...hi.  I'm S...and that blur that just ran through your house was Miss J.  And this is M."

We sat in the shade of a tree in her backyard with our boys on that hot summer day, sipping iced tea and getting acquainted.  We discovered we had much in common.  Conversation flowed easily. There was comfort.  We understood each other.  No explanations were needed.  

Another get together was planned.  Then another.  And another. Before long our families were spending weekends together or planning mini vacations together.  We began spending Easter and Christmas together.  New family traditions were born.  

This bond, this amazing friendship, helped save me.  It brought me back out again.  It reconnected me to the world again.  I relaxed, I laughed.  I had FUN.

Miss J and Miss A share that special bond as well.  The girls are quite different.  Miss. J is outgoing, fearless, free spirited, impulsive, silly.  Miss A is articulate, serious, conscientious, calm.  They give each other balance.  Each has what the other needs.  

Through the years, K and I have grown quite close.  There is no need to pretend, never a need to force a happy face.  No need to hide.  She accepts me at my best, and even still when I am showing her my absolute worst.  She is always there for a shoulder, an ear, a hug or a solid kick in the butt when I need it.

Perhaps it was some Divine intervention bringing this family to ours. Perhaps this journey with M had caused me to be more aware and more appreciative of the value of true friendship.  Perhaps I was in a place where I was ready to be open to receiving friendship.  

However it came to be, they are in my life.  For that, I am forever grateful.

The Amazing Miss J.

M was nearly a year old now and Miss J. had turned three.  There is a palpable sadness for me when I reflect on the previous year, not just for M, but also for Miss J. The endless medical appointments and time spent in the hospital had taken me from her.  So had therapy: driving to therapy, fighting with insurance companies on the phone to cover therapy and the hours spent practicing all that was recommended in therapy at home.  I too, had taken myself from Miss J.  Too many time I was in her physical presence, but had been far away emotionally.  My heart breaks to think there were times she must have believed that her mother was too tired, too sad, too angry, too busy to enjoy her.

Miss J. was never your typical child. She was just...different. She glided effortlessly through most milestones.  She spoke her first word at 6.5 months and by 11 months she was putting two words together.  Shortly after her first birthday she was speaking in sentences.  She was inquisitive, bright-eyed, deep, logical.  Her depth of understanding made her an easy baby and toddler.  If there was something we wanted her to do/not do, we simply told her and she understood.

I remember a day when she was just two and we were at the grocery store.  I was in the meat department contemplating buying chicken legs for dinner.  Miss J. looked at the package, then at me, and said with utter surprise, "There are fourteen chicken legs in here!"

"Yes, you are correct!  Nice counting!"
"No mommy! You don't understand! This means seven chickens had to die."
No, I didn't understand.  I didn't understand how a two year old had just put all of that together.

When she had just turned three, I had walked in her room one day to find her curled in a ball and rocking back and forth, sobbing heavily. I was alarmed and ran to her.

"Oh mama, " she cried, "There are so many hurting people in this world and I cannot help them."
She was just three years old.

Shortly after that she had decided, on her own, that she would donate her hair to Locks of Love.  She was three and a half the day I brought her to the salon for the twelve inches of baby-soft golden hair to be cut.  The hairdresser looked at me, scissors poised at the base of my daughter's ponytail and said, "Don't cry, mom!"

Clearly annoyed by the remark, Miss J. looked at the hairdresser and told her, quite firmly, "Excuse me, this isn't a sad day.  This is a happy day.  A little girl who has no hair is getting some."  Three years old.

I think she had sensed too, that initially we were concerned about M's survival in those early days, for one day she looked at me and said, "Mama, I have figured out death.  When a person is born, it is already decided how many days they will live. Some people get a lot of days.  Some, not so much.  And when you have lived your days, you are done.  You die.  It is okay, mama, because that is how it is supposed to be for that person."

Again when she was three and Christmas was drawing near, we were heading into the grocery store to buy ingredients to make cookies.  Outside the store, the Marines were collecting for Toys for Tots.  Miss J. stopped, looked at me and said, "Oh, so I guess there is no Santa."

"Why would you say that, baby?"
"Because if there were, there wouldn't be that," she said, pointing at the Toys for Tots collection.  She shrugged her shoulders and went in the store.

Yes, this was Miss J, the old soul packaged in a tiny body.  The girl whose depth and innate intelligence both awed and frightened me. The girl who rarely cried.  Who never got angry at Mr. A or I. Who never resented her brother.  A girl far too logical for her three years on the planet.

She is mine. She is a gift.
How could I have missed so much?

Strong

Mr. A had been laid off.  Mr. A had been laid off!!  Mr. A had been laid off?? How could this be?  Even with all the stuff gong on with M, he'd hardly taken time off. He'd just had a glowing review.  What the hell?

Our minds were racing.  What would we do?  What about health insurance?  What about therapy?  Would we lose our house?  How long would it take for Mr. A to find another job?  Oh crap. Crap. Crap.

We had our initial freak out.  We worried and we cried.  We talked...and talked....and talked some more.  We talked into the late hours of that night.  When we had nothing to cling to, we clung to each other.

In the storm circling around us yet again, I unexpectedly felt calm, comfort and peace. I understood so clearly in that moment that, together, we were strong.  We had survived (and thrived) that first tumultuous year with M and we would survive this.  This could be fixed.

I had so often felt that the past year had slowly been chipping away at me and that I would soon be broken in my weakness.  At times I had been so overwhelmed and overcome by that feeling that I had failed to see the gift that had also been given to me.  It was strength, courage and wisdom.  It was hindsight and insight.  It was because of what we had endured during the past year that we found our strength to make it through the next challenge.

Mr. A and I pulled ourselves up and forged ahead.

Mars and Venus.

Remember that book, Men Are From Mars, Women Are From Venus ? Like most men and women, Mr. A and I have different ways of doing the same thing  . Raising a child with special needs is no exception. We are each neither right nor wrong, we are simply different in our approach.

Even under the best circumstances, marriage still has its challenges. Half of all marriages today end in divorce and if you happen to have a child with special needs, that number jumps to 80%.

When M was born, our life abruptly changed.  We had two children to raise and one had very significant medical and developmental concerns.  Managing M's doctor's appointments and therapy schedule required that one parent assume the role of full time care giver.  We'd now become a single income family, not by choice, but by necessity. A new line was added to the family budget for the ever growing pile of M's medical bills. There was no negotiating.  No way around it.  This is how it must be.

There was the emotional toll too.  Initially, Mr A. and I were in a a state of shock.  When the shock wore off, Mr. A and I each dealt with things in a different way. Frequently I cried.  I yelled and screamed and threw (and broke) a few things along the way.  I worried obsessively.  I Googled everything and had self-diagnosed M at least a dozen times. I opened up to my closest friends and family.  I talked to my pastor frequently.  I dabbled in therapy until my insurance company decided I should have all matters worked out in ten sessions and cut me off.  I devoured books on special needs parenting.  I joined an on-line support group.  I threw myself into M's therapies and diligently worked with him at home each day.  I kept lists of questions for the doctors for upcoming appointments and created a three-ringed binder to organize all of M's reports and evaluations. This was the something I could do.  I felt informed.  Organized.  Knowledgeable. Strong.  Powerful.  I felt I was regaining what the past year had so cruelly ripped from me....a sense of control. I could not control what had happened to M, but perhaps I could be in control of how I dealt with it.

Mr. A was quite different.  Mr.A was quiet, calm and solemn.  Mr A. didn't cry or yell or scream.  When the doctors would throw out a name of a possible diagnosis, he never Googled it and simply said that, logically,  it would do no good to worry until the results came in.  Mr. A felt no need gather the guys for some wine and a good cry.  He was uninterested in sharing his feelings with a support group or reading up on the latest therapeutic approaches for kids like M. At times, he'd even close down from me.  There were times I was incensed by his calm and had mistakenly taken it as being uncaring, insensitive or unloving.  I now understand his subdued reaction gave balance to my intense one.  I hate to imagine what might have happened had we both been crying, yelling and breaking the good china plates.  I now also know that his reaction gave him the exact same feeling:  Strength.  Power.  Control.

Mr. A survived by throwing himself deep into his work.  Work gave him a temporary escape from the chaos of our lives.  Work became his refuge.

There is a day that stands out clearly in my mind.  It was two weeks before Miss J.'s third birthday and was at home planning her celebration.   It was around 9:30am and Mr. A's car pulled into the driveway.  It was odd that he would come home so early and I went outside to meet him in the driveway.

"Go in the house," he ordered quietly.
"What?"
"Go in the house.  Sit down. We'll talk inside."
I panicked and immediately began to cry, even though I had no idea what I was yet panicking about.  "No, I am not going inside!  I am not sitting down! I refuse to sit down!"  (Somehow in that moment I rationalized that bad news could not be delivered in a standing position.)

I don't remember going inside, but I do remember his words:  "I've been laid off."

Welcome to Holland

When M was born, things got blurry.  I went numb and for a while I turned inward. Perhaps initially I though I was just passing through Special Needsville, just a quick stop before moving on to the beautiful landscape of Greener Pastures.  But alas, it had been determined that we would forever reside in Special Needsville.

When I reflect back on those first frightening months, I imagine it being like in the center of a tornado's path.  You have no warning and you don't see it coming, having little time to plan and then you are left in the stunned silence of  the aftermath.  It takes time to make sense of what just happened, to formulate a plan and to pick up the pieces and carry on.

In the utter devastation, you wonder how you will ever live a normal life again.  Will fear and despair give way for joy and happiness?  Initially you cannot see past the glaring shock of what has happened and into the future of  possibility and what may be.

But...the dust does settle.  You rebuild.  You live and laugh and smile again.  You find joy and happiness, but most importantly, eventually you find peace.

Through the years of parenting a child with special needs, I have been given some beautiful essays by others who have traveled this road before me.  Many I have read so many times I can recite them by heart.  One piece in particular is "Welcome to Holland." Chances are, if you are parenting a child with special needs, you are quite familiar with this essay.  Some parents love this piece.  Others hate it.  Regardless, to those who are new to it,  I find it worth sharing. Here is the piece:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Hypotonia 101

HYPOTONIA: (′hī·pə′tō·nē·ə) (medicine) Decrease of normal tonicity or tension of muscle tone.

In short, a person with hypotonia is floppy and like a rag doll.  Muscles are soft and doughy.  There is no tension, no resistance in the muscles.  Imagine picking up a child who is in a deep sleep.  This is what a child with hypotonia feels like in your arms.

The tone you have is the tone you are born with.  You cannot change your muscle tone.  You can exercise and develop muscle strength, but a person with low tone will always have low tone.  Hypotonia is not a diagnosis in itself; it is almost always a symptom of a more serious condition. Central-based hyptonia (the type M has), originates in the brain.  Seeing a neurologist is the next logical step.

Mr. A and I sat in the office with M waiting for the neurologist to enter.  He came in and sat down at his laptop and started reading M's file.  He didn't say hello.  Didn't introduce himself.  Didn't glance in M's direction.  

"Why are you here?" he asked, eyes never leaving the computer screen.

"Well, our pediatrician said he has hypotonia and the neurologist at Children's thought he might be having focal seizures and he's developmentally delayed."

He looked at me.  "And?"

"Well...naturally we thought since M has all these neurological things going on, we should see a neurologist.  Do you think...."  I was cut off mid sentence.

"I will ask the questions."  He continued to read M's file and then measured M's head circumference.  He pulled M to a sitting position and checked his reflexes.  He asked what milestones M had or had not reached.  He asked about family history. Finally he said he could order an MRI of his brain and added, "But perhaps you should wait until he is older since he had some trouble with the anesthesia."

"Okay....what else can you tell us?  What do we do now?  Do you know what is wrong with M?"

"No, I do not know what is wrong with your son.  You should continue with therapy.  Talk to your pediatrician about getting an MRI.  The biggest concern now is for his cognitive abilities.  Ninety percent of people with mental retardation have hypotonia.  I cannot say if your son will ever walk.  But my guess is  not before age five and not without a walker. Follow up in a year."

This time, I cried the entire way home.  I called the pediatrician.  "We'll be needing the name of a different neurologist."

Darkness and Light.

Sitting in a hospital with your newborn son, wondering if his fate will be to live or to die, is a sobering experience.   There was so much fear in those days.  Fear that he would die.  Fear that he would live and I wouldn't be a strong enough mother.  Fear of the anger and resentment Miss J would have.  Fear of what would happen in my marriage.  And the deepest fear...what if I just didn't want to do this?   What if I can't love him? The fear of, "Oh crap, what have I gotten myself into and how do I get out of it?"  The accompaniment to the fear was the heaping side of guilt for even allowing such thoughts to enter my head.  And really, who do you share such thoughts with?  What mother wants to openly admit that her mind goes to such deep, dark places?  Darkenss.  It felt a veil of darkness had covered us.

Those days marked the lowest, darkest days of my life.  And then....one of the most joyous.

It was the emergence of M's smile.  He was six weeks old and that beautiful social smile had emerged right on  time.  Just exactly as the "What to Expect: The First Year" had said it should. It was angelic, pure and perfect. M's little body was weak and broken and hurting, but his soul and personality were shining through. It was I who could elicit that smile.  He wasn't just smiling at me...he was smiling for me at a time when I most needed it.  For the first time, I felt a true connection to my son, as though an invisible line had connected our hearts.  A wave of love had washed over me and I wanted nothing more than to see that smile over and over again.  

In those days when I felt I was in an endless ocean of  black despair, that smile was a lighthouse safely guiding me home.

Finally, I could hope for light after darkness.

The Mothership

I have a friend whose child spends far too much time at Children's main hospital.  My friend has dubbed this place, "The Mothership."

I clearly remember the drive to The Mothership.  We passed a grocery store and I saw customers grapple with their bags on the busy city streets.  University students hustled off to their next destination, piles of books in tow.  People out for an evening jog.  Anger washed over me on that ride. I wanted to do that too...any of that. Instead, I'd been given a summons to The Mothership.  How much life had changed in six short weeks.

The were ready for us when we arrived and we were taken to M's new digs on 4 West.

We stayed for one week. You begin to lose track of the days.  You forget if it is day or night.  During our stay, the month passed from September to October and it occurred to me that I hadn't paid the mortgage.  Or the growing piles of bills accumulating in the mailbox.  I hadn't showered in days. And my six week postpartum check up...did I miss that too?

And my sweet Miss J.  Who was with her?  My parents?  Mr A's?  Was she okay?  Was she missing us?  Was she scared...sad...angry? When had I seen her last? Had I kissed her?  Told her I loved her?

One specialist after another came in to poke and prod M.  In that week he'd gone under general anesthesia, had an adverse reaction to the anesthesia and ended up in the special care unit, had a broncoscopy where a scope was inserted into his lungs, an Upper GI, endoscopy, EKG and Echocardiogram on his heart, an EEG and CT scan of his brain.  He was seen by the ENTs, Cardiology, Neurology, Genetics, Gastrointerology, Urology, and a feeding specialist. I wanted to grab M and run.  Every single "ologist" who saw him added another diagnosis to his ever-growing chart.

M was six weeks old and he'd been diagnosed with:
Failure to Thrive
Renal Duplication
High Grade Urinary Relfux
Enlarged Bladder
Underdeveloped Kidney
Laryngomalacia
Tracheomalacia
Possible Focal Seizures
Hole in heart
Gastric Reflux
Apnea

The head of genetics paid us a visit and her examination of M was calm and thorough as she went over every inch of him.
 I asked her what she was looking for.
"Abnormalities," she said.  "Dysmorphic features that would suggest he has a genetic syndrome."
"Do you see any?"
 As soon as the words left my tongue, I regretted it.  I already knew the answer.  I just didn't want to hear it.  Hearing it said would make it too real.
"Yes, " I do.  She said.  She listed the abnormalities she saw.  The more dysmorphic features that are present, the greater the likelihood of a genetic syndrome.. She listed twenty two abnormalities.

Twenty two.

In that moment the strangest thought came into my head :  M didn't have a stuffed animal of his own.  One hadn't been given to him and I hadn't bought him one.  I was so certain that it was possible M may not live and I wanted a stuffed animal to be placed with him if the time came.

Bombshell

The pediatrician sat me in exam room #2 with four week old M and began, "Well, there are some things that showed up on M's renal ultrasound."

We've been with this pediatric practice since Miss J had been born two years prior and had grown to love our pediatrician.  He was kind and gentle and always had a warm smile.  Playful and fun, Miss J had always been at ease with him.  Today the smile was replaced with a look of serious concern.  He got right to the point,

"M's right kidney is very small and underdeveloped.  Both kidneys are duplicated, so basically instead of one ureter leading from the kidney to the bladder, there are two ureters on each side.  Both kidneys have high-grade reflux and the urine from the bladder is flowing back up the ureters and into the kidneys.  His bladder is larger than it should be. You'll need to see a pediatric urologist."  

I sat, stunned, taking in all this new information.  Before I could respond, the pediatrician continued, "I am listening to him breathing and I don't like the sound. I want to to also see a pediatric ENT."  He took M and listened to him carefully.  

"Do you hear that?  He has tracheomalacia.  His airway is floppy.  It isn't uncommon and usually isn't serious, but I want you to get it checked out."

Within a few days, we were sitting in the Urologist's office.  He confirmed what M's pediatrician had told us about the kidneys.  We were scheduled for a battery of tests.  He would need regular ultrasounds to monitor growth of the right kidney and to make sure damage didn't progress.  M would start taking antibiotics every day to prevent any urinary infections.  He cautioned us that if M were to get a urinary tract infection and that infected urine back-flowed into the kidneys,  serious damage could occur. M would need monthly urine checks for bacteria.

The appointment with the ENT was for the following week, but M's breathing seemed to be getting worse.  I called to see if the appointment could be moved up and was told that babies with tracheomalacia do breathe very loudly and not to be concerned, but that they would move the appointment up for the next morning anyway.

I hung up the phone and looked in on sleeping M.  His breathing was loud and ragged and he looked more gray than pink.  I put M in the car and took him straight to the pediatrician. 

The doctor looked at him and said, "He's not safe to be at home.  He needs to go to Children's.  Now."

Tomorrow:  The Mothership

The Beginning

If I am going to share the story of M, I should start at the beginning.

I should also introduce the cast of characters: Aside from M and me, The Mama, there is Mr.A.  Mr. A has been my husband of nearly 14 years and partner for nearly 22.  There is also Miss J, our spunky, kind hearted and beautiful nine year old daughter. These are the key players who make up my life.

People will often ask me when I first realized something was "wrong" with M.
At birth.
Immediately.

People will often describe moments when their lives changed dramatically in an instant.  Mine happened on Saturday, August 14th  2004 at 11:52am.  There is a clear divide in my life where on one side "Before M" lives and the other side is "After M."

The pregnancy was uneventful.  Labor was uneventful. His actual birth, was not. M was born and he was silent.  There was no cry.  Suddenly there was more medical personnel in the room.  People were moving in all directions.  No one spoke and an eerie silence fell on the room.  M was ambu-bagged.  A mask was placed over his face and air was forced into his lungs. Someone said it was a boy.

The NICU nurse came and whisked him away.

The neonatologist explained that M had aspirated on meconium which is why he didn't cry.  When he was bagged, the pressure of the air being forced into him had collapsed his tiny lung.  He was on oxygen and had a feeding tube inserted through his nose and into his stomach.  He had an IV of antibiotic dripping into a little vein.  We were told he'd spend a few days in the NICU, but he was otherwise fine. There was nothing to worry about.

And just like that, I was discharged from the hospital without M in my arms.

When we could finally take him home, he was pronounced healthy.  There was some concern about the amount of weight he'd lost and we were told that until he gained weight, he'd need frequently weigh-ins with the pediatrician.  And then we were told to get a renal ultrasound.

"You said he was fine.  That he is healthy.  Why do we need to check his kidneys?"
"Well," the neonatologist explained, "Some babies that have lung problems also have kidney abnormalities.  It is a one-in-a-million chance, but we recoommend you do it.  Don't worry, I'm sure your son is perfectly fine."

I scheduled the ultrasound and off I went with M and Miss J in tow.  The ultrasound took a long time.  Longer than it should have.  It did not go unnoticed that the tech, who'd started out so friendly and chatty, had grown quiet and serious and was very much focused on the screen in front of her.

When I got the results the next day, "perfectly fine" seemed little more than a pipe dream.

Tomorrow:  Bombshell.

Waiting.

Waiting.  

I have a son.  He's seven and he has special needs.  He is a complex boy and the list of needs that make him "special" is a long one.  The fact that he is a child with special needs is obvious within the first three seconds of meeting M.  Usually one of the first questions I am asked is, "What does he have?"

His diagnosis? I don't know.  

"Well, have you had him tested?"  Um...yes.  Multiple times, in fact. And  I can tell you a few hundred things he doesn't have, though.

M was six week old the first time he was examined by a geneticist She ran a battery of tests that all came back normal and clearly, M wasn't.  "What do we do now?" I asked her.

"We just wait and see what he shows us.  Come back in a year or two." she replied.

Waiting.

It cost several thousand dollars to be told, "Wait and see."

When M was a baby, I'd ask his specialists, "Will he walk?"  

"We'll have to wait and see."

"Will he talk?"

"We'll just have to wait."

"Will he be able to live on his own, hold a job?"

"Well, we will just have to wait and see,"

Waiting.

Recently we were advised by M's neurologist to go back to genetics for more testing.  When I called to make the appointment, I was told they were booking six months out.  More waiting.  After a quick call from the neurologist, our appointment was moved up to six weeks out.  

The geneticist had two specific syndromes in mind for M.   Of the two, one syndrome isn't so bad. I mean, if your kid had to have a syndrome, this wasn't the worst that could happen.  M could live with it and so can we. Strange as it may sound, this is the one we are "hoping" for.

The other syndrome, if the test is positive, will be harder to digest. This is the one I have googled obsessively and have hoped and prayed and wished will not be diagnosed.  Frankly, this one will suck.  

I was told to call for the results in 4-6 weeks.  At four weeks to the day, I called.  The tests are still processing and  I was told to "Wait another four weeks and call back then."  More waiting.  That was one week ago.  I have three more weeks to wait.

Waiting gives you time to think.  And I think I will give a blog a shot and share this journey with you.....