Friday, June 24, 2016

The Teacher

We all have that teacher that we remember as a student.  The teacher that encouraged and believed in us when we didn't see it ourselves.  Regardless of how old you get,  you look back with fond memories.

But as a parent, it is rare to find a teacher that touches you so deeply that they make an impression on your family that will last generations.  We have been lucky to have a first grade teacher that helped us transition our girls to general ed.  It was the deep trust and communication that helped the girls blossom.  As they are about to complete third grade, I can still point out the skills that they learned in 1st grade.  And while, I will always be deeply appreciative, I was never moved to tears until our baby boy entered her class.

It was a leap of FAITH.

Kindergarten had been so rough for him.  A majority of his day was spent dealing with the crisis team.  His behavior issues were so great that he barely was able to learn.  About 5 months into Kindergarten, he started learning his letters and shapes.  He constantly told us that he wanted to go to the Church school with his sisters.  We explained that he couldn't go if he behaved the way he did. We took him to the girls' school events and he loved it.  He smiled, laughed and rarely acted out. Academically, he was struggling, simply because he missed so much instruction and we worried that while his behavior was going well, the frustration of being behind might be too much for him to handle.  But every day he asked at pick up to go to that school.

There is no other teacher that we would have trusted to be his first grade teacher other than Mrs. H.  I watched him walk in and try to be a gentleman.  He looked up to her with hero worship and the goal was to make her happy.  He tried so very hard from the first day to be the perfect student.  And when he couldn't control himself, he would quietly withdraw so that he wouldn't be disruptive.  We watched him mature.  

He struggled with the work at first but he caught up.  He still struggles with his handwriting and he's hard on himself when it isn't as neat as he wants it.  We've explained that some people's hands work differently and eventually, he'll get there.  And he believes that, not because we say it, but because Mrs. H told him.

I saw him get honors this year.  I watched him cry because he was so proud of himself when he was named Student of the Month.  I saw him feel.  FEEL!  He disappointed Mrs. H one day and was so remorseful that he used money from his savings account to buy her a gift that he thought she would love as an apology.

I saw him adopt some of her mannerisms and encourage his love of learning. And while a child's behavior can be a compliment to the parent, I know that we did not succeed alone.  Mrs. H is a teacher that has made her mark on this child and I cannot be more thankful.

When I heard that Mrs. H was retiring, I cried.  I cried in thanks that my son was in her last class.  I cried for the students that will not be lucky enough to grace room 24.  Our son is completely integrated and entering second grade on grade level.

On the last day of school, he turned to me and said, "Mom, I know how to spell faith. Mrs. H taught me. F-A-I-T-H."

She taught me that too.

Thank you.  I'm glad we took the integration journey together.

You will be missed. 


Saturday, February 15, 2014

Mommy's Miracles: Acceptance

Mommy's Miracles: Acceptance: I've come to realize that there are stages of acceptance just like grief. My first run-in with acceptance happened when the girls were...

Acceptance

I've come to realize that there are stages of acceptance just like grief.

My first run-in with acceptance happened when the girls were 18 months old.  It was during the week that my little CEO regressed.  I remember the horror of the first time she smacked herself across the face and the instant denial that anything was wrong.  I ran around to different doctors asking their opinion but really not understanding their responses until one doctor used the word Autism.  I had never met anyone with Autism.  What did that mean?  Was she mentally retarded?  Is it a seizure disorder?

I had no answers.  I called MOST-Mothers of SuperTwins-they had helped me with all aspects of my triplet pregnancy and life so far.  They would have the answers.  I don't even remember my questions because there were so many but I remember one answer so clearly...

"Just when you have your footing, you'll see something that will concern you and your comfort will disappear.  You can go years on a great path and for some unknown reason something will change and you will fight to get your child back.   My biggest piece of advice is to enjoy every moment that you can and cry when you have to...ask for help, you'll need it."

*******************************************************

"Come on, Baby Girl.  Say my name.  Ma-Ma.  Ma. Ma.  You can do it.  Please."

I grab your hand as you are about to punch yourself in the face.  I wrestle with you on the floor so that you don't hurt yourself.  I watch your eyes glaze over as you realize that I am going to overpower you.  I see your survival instinct kick in and I prepare for the hit.  You smash your head back into my chest.  I feel my strength leave me.  My heart feels like it's missing some beats.  I vomit on the floor next to us and wrap my body around you.  I begin to rock as violently as you like it except that I am protecting your head from hitting the wall.  I'm protecting your arms with mine.  I take each hit that you want for yourself.  I feel you calming.  My shirt is wet from sweat and tears.  You fall asleep in my arms and I slowly stand and place you in your crib.  I'm exhausted.  I turn and see two little faces staring at me.  The Baby is silently crying and the Bugabuga is looking past me to her sleeping sister. It's time to focus on them.  You'll sleep for an hour.  I can do this.

As the days passed, I felt a disconnection to the violence that was surrounding you.  You were completely silent at this point.  Every morning I woke up with you with the memory of your voice in my head.  Every morning I was determined that this was the day.  This was the day that I heard my baby speak again.  Every night I cried myself to sleep knowing that I failed you.  I couldn't find you in your head.

The therapists calmly checked on me and whether I was at breaking point.  I kept a positive outlook but one day they offered respite and they offered to have a therapist show my how to hold you so that I wouldn't get hurt anymore.  I wonder what they saw.

My denial was powerful but my acceptance in you as a person never wavered.  If this was the limit of your capabilities then I determined to change the world to accept you.  I accepted that things were going to different-not harder-just different.

I learned sign language.  When the therapist told me that I had to find a new way to communicate with you I recoiled.  I heard your voice every night in my dreams.  I knew it was there but it had been months since we had spoken.  I signed, "More?" and pointed to the bottle and you nodded.  You signed, "More."  I cried for hours.  We were communicating.

Months of intensive therapy and you started saying some words as well as signing.  I was over the moon.  You were coming back.

I began to accept that our home was always open to therapists.  I accepted that I couldn't randomly grab you to tickle and cuddle with you on the couch.  You were busy working at therapy.

There were days that were good and there were the other days that almost broke me.  There were days that I wanted to send everyone away and just accept you as you were and screw the world.  Then I would remember that I was 30 years older than you.  One day you will be without me and you need to have the skills to survive.

I started teaching you how to use the microwave at 2 years old.  You would make popcorn for the therapists as I stood behind you.  Everyone was impressed.  I'm still impressed.

At 3 years old, you had enough words that we started weening ourselves off of sign.  I went back to work and Daddy took over the day-to-day toil that broke me.  By this time, your sisters and brother were all diagnosed with Autism.

I accepted that it was my fault somehow.  I'll never know what caused the genetic mutation but I carried you.  I know it was my job to protect you.

At 4 years old, you regressed.  I was given statistics about regressions and what it meant for our future.  We used a mixture of sign and the words your retained.  I accepted that this was our path.

I began practicing sign alone so that I never forgot it.  You found me one day in the kitchen practicing and you began signing happily with me.  You had a huge smile.  You are bilingual.  We increased the intensity of your speech therapy.  You needed to speak in sentences.

One day you got it.  You were grabbing words and stringing them together.  Your progress took off.  You were able to be placed in an integrated setting with your sisters.

We were so proud.  We watched you blossom through Kindergarten.  So much so that we took a leap of faith and placed you and your sisters in Catholic school for 1st grade.

Socially, you are doing an amazing job.  I cannot begin to verbalize my happiness that you have friends.  I see your troubled expression when we talk about class work.  I see how you sit there for hours and it's not sinking in.  I know we have to find another way to reach you.

I accept that you are an amazing child.  I believed that being book smart was the mark of a successful person.  And then I met you and I know that the empathy that you feel for people is what will make you successful.

I hope and pray with every fiber of my being that you will retain your language and continue to grow and learn.  I accept that you may not.  I choose to sign "I love you" every night.  I welcome your sign back.  We always follow it with "Love you" verbally but I know that the sign is our special connection.

I accept that I will always push you harder and fight for you until my dying breath.











Friday, April 19, 2013

Try

It's so amazing how music can soothe a soul.  As I sit day after day, exhausted after walking around minimally, my soul is restless and looking for an outlet.
I'm angry.  I want to feel better.  I'm sick of being sick.  Almost every morning waking up and mentally readying my mind for the physical pain I am going to deal with because I can't take any painkillers that will interfere with some of the tests.  Wanting so badly to be healthy again that I am willing to endure the pain rather than delay the tests.  Holding on to my emotions with an iron fist.  Determined to get well.
Each night as the pain becomes unbearable, I turn on the music and sing along to music and try to lose myself.  I listen to the lyrics...

Ever worried that it might be ruinedAnd does it make you wanna cry?When you're out there doing what you're doingAre you just getting by?Tell me are you just getting by by by
Where there is desireThere is gonna be a flameWhere there is a flameSomeone's bound to get burnedBut just because it burnsDoesn't mean you're gonna dieYou gotta get up and try try tryYou gotta get up and try and try and tryYou gotta get up and try and try and try
(Try by Pink)
The days are flying by yet crawling.  I'm almost three weeks post-op and today was the first day that I cried.  I'm tired, bored and completely unable to focus.  I'm weak and scared that this is the new me.I want to be able to work.  I miss the mental aerobics.  I miss the purpose.  I miss the strength.  Every time I reach for a wall or rail to steady myself, I take a deep breathe to control the rage, sadness and fear that I feel.   
  You gotta get up and try and try and try
You gotta get up and try and try and try
Try
Try
Try

I'm trying.

Saturday, March 30, 2013

Mommy's Miracles: A Defining Moment

Mommy's Miracles: A Defining Moment: November 2007- "Your uterus is under extreme stress.  It may hemorrhage.  We may not be able to save it.  You may not be able to have...

A Defining Moment

November 2007-

"Your uterus is under extreme stress.  It may hemorrhage.  We may not be able to save it.  You may not be able to have any more children.  I want you to understand what you are doing to your body.  I can't promise you that years later, you may lose your uterus because of the damage.  If we continue the pregnancy, it will be for the betterment of the girls but to the detriment of you.  They have a good chance of surviving at this point."

"Will they have issues?"

"The chance for developmental delays and lung issues are still a great risk."

"Then continue with the pregnancy.  Whatever is God's will, will be.  If I lose my uterus, it's worth it for their health."

December 2007-

"The girls are doing fantastically.  They are the first triplets in the hospital's history that did not need NICU.  Great job, Mom!  We were also able to save your uterus."

February 2009-

"You have a son.  You had a tough time there.  You lost a lot of blood.  We were able to keep your uterus but it was close."

January 2013-

"My heart hurts.  Oh my God.  Help me."

"Ma'am, your hemoglobin is dangerously low.  Are you bleeding?  Ma'am, we need to do a blood transfusion."

I stared at the doctor, baffled.  I didn't understand what he was saying.  He gave me a paper and I signed it.  I was quickly moved out of the ER hallway into a semi -private room.  Both arms had IVs.  The nurses were talking about side effects and allergic reaction.  I nodded without understanding.

The blood began to flow into me.  It was such an odd feeling-endorphins were pumping.  I felt high and my confusion started to abate.  I felt good.

Hours later, after blood tests confirmed that my levels were still too low, I began the next transfusion and listened to the nurse explain the risks and reactions again.  I sleepily nodded.  I felt the fullness of the blood.  I took a deep breathe and heard myself snore.  My hands began to twitch.  My feet began to twitch.  I felt my blood cells explode. My eyes instantly opened.  I focused on a nurse in front of me and let out a piercing wail, "Fred! Help!"

My body was contorting in pain.  I was rubbing whatever I could reach against the wall.  I felt insane.  I wanted to ram into the wall to knock myself out.  I started hearing a rasping noise, my breathing sounded funny.  My words were garbled.

"Can you breathe?"

Focusing with all my might, I looked into the nurse's eyes and shook my head no.  A mask was placed on my face before I passed out.

March 2013-

I felt blood gush out of my body.  I put my hand to my head to make sure that I didn't pass out.  I walked briskly to the bathroom.  I felt the blood pouring down my legs.  Something is very wrong.  My instinct was screaming to go to the hospital but I was afraid to stand up again.  I sat at my desk debating my next step.

I finally worked up the courage to go home.  I made it into the house before I passed out from exhaustion.  I was suddenly so tired.  No, I didn't want to go to the hospital, I just needed to rest.

Two hours later, doubled over in pain, I made my way to the ER.  Doctor after doctor checked my abdomen.  CAT Scans, X-rays, exams later...

"I'm sorry.  We know that you are in pain but we've ruled out all life threatening situations.  We're clearing you to go home."

"What am I supposed to do about the pain?  I can't live like this.  I can't stand up."

"Take some Ibuprophen."

I sat in the room and cried.

I went home and cried.

Two days later, I sat crying with my primary doctor.  I was at wit's end.  It was my birthday and I was so sad and in so much pain.  I told him about the exhaustion but things looked like they were getting better.  We talked about me going back to work.  I was relieved.

I slowly sat in the car service.  I didn't trust myself to drive anymore.  I arrived home and made it up to the second floor before the waves of pain started washing over me again.  I crawled up the last flight of stairs.  I laid on the bed and fell instantly asleep.   My husband woke me later so we could celebrate my birthday.  The kids were so excited.  I sat dazed on my favorite chair while my family sang the Happy Birthday song.  I smiled and hugged them all.  I was struggling to stand again so I sat and smiled until everyone was gone.  I looked at my husband and reached out my hand, "I need your help."  He walked me to the bathroom-the next room over and then walked me back to bed.  "Something is not right."

Twenty minutes later, I ran to the bathroom, slamming into walls to get there.  It was so bad.  I felt so weak.  The next two days continued in the same vain.

"I just need to get to Monday so I can go to the doctor again.  The hospital didn't know what was wrong."

"It's Dr. R.  I'm aware of what's going on.  You need to go back to the ER."

I hung up.  Grabbed my charger and kissed my husband good-bye.  I knew I wasn't going home quickly.

"I'm here because I feel my hemoglobin decreasing.  I'm getting symptomatic. Please check my levels."

Three hours later, two women were moved out of the OB rooms so that they could check more patients. A woman sits in the chair across from me, crying in pain.  "I was just getting comfortable, why did you move me?  I'm not well enough to be sitting up." My patience is thin.  I don't want to hear the bitching.  A resident comes to me and tells me to follow her.  I stand up and blood splashes on the floor. A woman grabs me as my legs give out.  A wheelchair brings me into the room I had been in earlier in the week.  I hear the same woman, scream.  "Oh my God!  That woman is dying in the chair in front of me!  I'm going to sue for mental anguish."

I'm struggling to keep my eyes open.  I need to go to sleep.

"Ma'am, you need to stand up.  I'm going to help you." A nurse slips an orange band on my arm.  I'm a fall risk. Blood splatters on the floor again.  I begin to fall forward.  Someone grabs me hard and lifts me on the table.  I turn and see 8 doctors staring at me.  They are pulling at my clothes.  I hear an alarm go off in my room.  STAT. OB room 43.  STAT. Rapid Response room 43.  I grab a nurse near me.  "What room is this?"  She looks at me with concern, "Room 43."

Another group of doctors walk in.  Everyone was talking over my head.

A paper was shoved in my hand.  A consent for blood transfusions.

"I had an allergic reaction!  I need benedryl."

A nurse added a second line.  "My name is Lou.  Don't go to sleep.  Talk to me."

"I'm so tired."

"Do you have children? How old are you? What's your name?"

"My name is Priscilla.  I'm 35.  My birthday was Friday.  I have four children."

I hear someone say, "At least, she already has children."

Lou asks me if I want any more children.  I quickly respond, "Yes.  I always wanted one more."

A doctor steps up to me, "We'll do what we can."

I fall asleep exhausted.

I wake up a while later and see a nurse camped out at my bedside.  I reach for my phone and text my husband to come to the hospital. It's never good when a nurse is assigned to sit with you.

I'm being admitted.  As the days pass and 4 more transfusions, numerous failed interventions. I wait for surgery.  This is the last hurrah before we have to proceed with a hysterectomy.

I smile at my doctor before I'm put to sleep.  "Let's do some damage!"

I wake up hours later.  The resident that I have nicknamed Spiderman, comes to talk to me.

"I'm sorry.  The surgery was a failure.  Your doctor will discuss the next steps with you."

Two days later, I sat at home in agony.  My whole body hurts from the surgery.  I slept most of the days away.  I saw my doctor a week post-op.  I wanted to go back to work.  I was so bored.

He did an exam and shook his head.  "I can't clear you to work. You need a hysterectomy as soon as possible."

I looked at my husband.  We knew we had to do it.  It was a matter of life or death.  My dream of having another child died in that office.

As I sit here, two days before the procedure,  I'm in so much pain that I feel relieved that it will be over soon.  And in the next breathe, I start to tear up.  I close my eyes and remember the way it felt to hold my newborns.  I remember the joy in my husband's face as he looked at his new children.

I look at my sleeping children and remember the doctors words, "I can't promise you that years later, you may lose your uterus..."

I made the right decision then and it's the right decision now.

Tuesday, December 4, 2012

Twenty Seconds

5%

It's time for Handsome's meeting.

5%

We're holding hands as we walk into the room.  It's time to hear what he needs.  It's time to objectively look at the reports and adjust goals accordingly.

5%

I look at the teachers with the kind smiles.  I listen quietly as they discuss his lack of safety awareness.

They are satisfied with his progress but he needs help to continue on.  He needs help with his fine motor skills.  He needs help processing his emotions.  We need to work on his tantrums.

She's saying that he has a receptive delay.  It takes him 20 seconds to process what I said.  I feel like the teacher has punched me.  I just thought he was ignoring me but it's worse... he doesn't understand me.

I take a deep breath.  The teacher is smiling and saying that we are doing all the right things.  It's time to actively focus on potty training.  I'm excited but heartbroken.  My baby will be trained before Bugabuga, my oldest.  I take another deep breath.  I can't think of the other kids right now.  I can't think about their needs.  I have to focus.  Oh God, I can't do it. She's not trained yet.  She doesn't even care.  I can feel the emotion starting to choke me.  I want to get out of this room.  I need to leave.

I smile at the teacher.  "I'm so glad to see he is progressing so well."  She looks relieved that I am satisfied. "Let's discuss the 5%."Her smile fades.  This conversation is not going to go as easily as she had hoped.

"Physically, he has progressed to 19 months old. It's great progress." I appreciate her ability to spin this into a positive.  I leave the fact that he is 46 months old unsaid.  It's more than a two year delay.  He's physically functioning better than 5% of children his age.  The teacher is still talking but I've hit my limit.  I'm signing the papers.  I'm nodding but I'm done.

We quietly make our way home.  We walk into the house and Handsome comes running-arms extended (for balance?) I prefer to think it's for a hug.

"Hi Handsome!  How are you?  I missed you!"

He's staring at me.  I'm silently counting.

18...19...20

"Hi Mommy!  I missed you too!"

I give him a huge hug.  I wish I could hug his teacher.  She gave me a huge gift.  Twenty seconds.  I can help him understand.  I can wait 20 seconds.

No more frustration, just understanding.