Glass Half-Full

Truly I am not a Pollyanna.  I don’t go around wearing rose-colored glasses and looking at a pile of excrement as anything other than a pile of excrement.

That being said…

I choose to look at my life as a glass half-full rather than half-empty.  Please don’t say it.  I know it is a cliché.  But there is sooooo much more to my life than the difficulties involved with having a handicapped son…or disabled child…or special needs boy…whatever the latest terminology is.

And maybe I am being just a bit simplistic, but the truth is this is my life.  And, like it or lump it, it is mine. It is mine to struggle against…or embrace.  It is mine when things are going great…and it is most definitely mine at 2am in the ER with my beautiful boy struggling to breath, or fighting mad because he is in pain and he just doesn’t know how to tell me exactly what is going on inside of him except to say–perfectly clear, mind you–THIS IS BULLSHIT! My thoughts exactly Nikopop…My thoughts exactly.

Thankfully, we have very few ER visits these days.  But, the truth is that ER visits in our household are like visits from that one person in our lives we all have…that one who shows up unannounced when the house is a wreck, and you are exhausted…the one you can’t break away from no matter how hard you try.  He or She will come over…we just don’t know when…and it is always at the worst possible time.

My life is full of…surprises.  The biggest surprise was Matthew.  We weren’t trying for our first-born.  He just happened. And as I have said before, thank God.  He has been a joy.  And then came Nick.  Who we tried for.  The child I prayed for.  And he has been a joy as well.  Through all of the tears I have shed for that boy…he has brought me infinite joy.

I probably will never fully understand the WHY behind my Nick.  But occasionally, I am witness to miracles that I would never have seen if I hadn’t been blessed with him.  And maybe I look for miracles where others would see nothing.  If so…I would much rather live my life this way than constantly seeing the negative side of things.

Most of the miracles I witness involve the development of my youngest and oldest sons into amazing men.  While the oldest is approaching twenty-one years of age, the youngest is only almost seven.  I know he is still a little boy, yet he amazes me with the way he loves his brother.  Maybe they would both be awesome young men without ever having met Nick…and then maybe they wouldn’t.

Tonight, I saw the simplest little thing.  And I almost cried.  Nick and Isaac had been sharing a bag of Cheetos (Nick’s favorite) and their mouths were covered  with cheese dust.  Isaac ran out of the room and ran back in with a wipe.  And then I watched my little boy carefully and lovingly wipe Nick’s mouth off.  He did it without thinking…without being asked to do so.  Honestly I have never asked him to wipe off Nick’s face. He just did it all on his own.  And I was truly amazed.  And thankful.  And realizing how blessed I am.

Now I know I am not alone in this…I know there are many other mothers and fathers out there of special needs children…parents who can see the joy in their lives…even in the midst of their darkest days.  I just wish others could see this as well, and not pity me or canonize me…just realize that I am a mother of three awesome young men, by the grace of God alone.

6 Comments

Filed under Family, Kids, Nick

Goodnight Sweet Girl

Yesterday, we said goodnight forever to our Puppers….our Jazzerini…our DJ Jazzy Jazz…or just plain Jasmine. I wrote a post a while ago about her deterioration, and my reluctance to let go.  After that post, she had perked up…started eating and drinking again.  I truly believe that she held on for my son, Matt, to get home from Wisconsin.  He was her boy, after all.  She stood guard over him while he slept…allowed him to drag her around by a leash, and loved playing with Matt.

The house seems too quiet now.

We are all in a state of shock.  I knew it would be hard.  I just didn’t realize how empty I would feel.

For 17 years, she had been with us…through three apartments and three houses.  She used to panic when we would move.  We would always take her over to the new place last.  I guess she thought we were never coming back.  Poor thing.  We would never leave her behind. Until today at the vet’s. And though I know we made the right decision….the vision of her dying haunts me.

We were all there for her…the entire family…standing in the room with her, holding her, kissing and hugging her…until she breathed her last.  It was one of the hardest things I have ever had to do.  Leaving her there was what we decided we would do.  We are not the “bury the dog in the backyard” family…or the “ashes on the mantle” family either.  And that is not to say that I think that if someone does that they are weird.  It is just not us.  But leaving her at the vet’s office was tough.  We left her with her favorite blankie, one that used to belong to my son.  It just felt right to us to do that.

Today, I scoured through all the pictures that we have, searching for the perfect picture of her…and I think I found it.

It shows her looking up at Her boy.  You can see the love in her eyes for him.  I framed this picture and am going to give it to my son…I hope it brings him happiness instead of the overwhelming sadness that is engulfing us now.

I am looking forward to the time when we will only laugh about the wonderful times we shared with her…and not cry over it having to end.

I have never before made the decision to end a pet’s life.  Why can’t they just all go to sleep and die peacefully?  Why must we have to be the ones to play God and end their suffering?

So….Goodnight Sweet Girl…Sleep Well and know that you are missed and still very much loved.

 


4 Comments

Filed under Mourning, Pets

Why?

Last night, I received news that has shaken me to my core.  There is just no other way to describe it.  A young man who my son played baseball with ended his life.  He was 20 years old.  What?  How can this be? We haven’t seen this young man in about 2 years, since high school baseball.  And yet, I can still see his face, smiling from ear to ear, joking around with my boy.  I can see the way his eyes would light up when he pitched well, and the way he would hang his head when he didn’t.

We first met this wonderful young man seven years ago, when he and my son were in Pony League.  He was a pitcher and back up catcher when needed.  My son was a catcher.  They got along well.  And he was the kind of kid who always had a smile on his face.

And I can’t believe I am writing about one of my son’s teammates using the word was. I just can’t come to grips with this.  And I am not related to, or even a close friend of, this family.  But there was just always something I liked about that kid.  He was special.  He would always say hi to my Nick, and give him a high 5. He would never walk by Nick without greeting him, and no matter how he played, he always spoke with anybody who approached him to tell him how great he performed.  He was kind.

What the hell happened?!?

This is not supposed to happen to kids just starting their lives.  What could have been so bad that he couldn’t see past that moment?

He was surrounded by people who loved him.  I saw his grandparents within the past year and they were beaming about how wonderful he was doing in college, what a great kid he was.  I was so happy to hear that.  He looked like he was heading in the right direction.

But what steered him off course?

My son just saw him less than 2 months ago.  They chatted and all seemed fine.

He is the first of my son’s friends to die.

Why?

And then I thought, “Oh God..if him…could my son?”

I have hugged Matthew stronger in the past twenty-four hours than I have in a long time.   I keep sending him texts, calling him…letting him know how much I love him.  I keep telling him that there is nothing that he can’t come to me about.  And I am terrified that my son could think of taking his life as an option now.

And I know there are no guarantees, yet that doesn’t stop me from wanting one.  I keep thinking about what his parents are going through right now….all of the questions, and they all begin with “why?”

Why would he do this?

Why didn’t he turn to his parents for help?

Why didn’t he see that it wouldn’t always seem so dark?

Why didn’t he know how much his leaving would hurt those around him?

Why didn’t anyone see this coming?

And every question leads me back to what I know.  I know that life is precious.  I know I am blessed to have these three sons that I have.  I know I have to tell them every day how much they are loved and how wonderful they really are.

And I know that every minute I have with them is a gift, and I better be sure not to waste a single moment.

 

 

4 Comments

Filed under Baseball, Mourning

All About Frances aka Nanny

On the date of her death, her name was, I believe, Frances Anderson Lang.  At one point she was known as Frances Christine Anderson.  But Christine was not on her birth certificate, nor on any legal documents.  I once asked her about it, and she stated that she was teased for not having a middle name, so she gave herself the moniker.  She was forever trying to fit in.  She was my grandmother, my Nanny, because that’s the name my eldest sister called her.  She was, up until the last years of her life, hell on high water.  She was a rebel.  She was difficult.  She was kind.  She was insane.

And, she was born on this day, 102 years ago.  She lived until a couple of months past her 97th birthday.   My grandmother was a paradox.  She wasn’t good.   And she wasn’t inherently evil.  She had a tough life in a lot of ways.  And I don’t think she ever completely understood how to deal with it.  She took her pain out on those around her.  She blamed me for my mother’s suicide, and she once threw a toaster oven at my grandfather because it wasn’t a Sunbeam for pity’s sake. She could spew venom and hate.  She could also nurture and love and show amazing kindness.  To the day of her death, I never really understood her.

But I am trying to.

She was born in 1908, the youngest of 4 girls.  She was a late addition to the family, born in Coffeeville, Kansas.  I was always told that there was a huge age difference between her and the eldest, Alta.  Actually, they were but ten years apart and there were two other girls between them.  There is also some vague memory of an older brother (though I am quite unsure) who died young.  But that could have been an uncle or a cousin I heard about.

Why do we never pay enough attention to our elders’ stories until they are no longer able to share them with us?

She almost died when she was an infant.  I can’t remember the name of the illness. But I do remember that my Aunt Alta told me that because she almost died they all treated her with kid gloves, and did way too much for her.  Aunt Alta said it was their fault Nanny was so….difficult.  I know that she was given elocution lessons from the time she was a school girl, so that she never had a southern drawl.  She was sent away to boarding school when she was a teenager.  I remember being told the reason was because her mother was too frail to care for her.  But that doesn’t sound like it was the real reason, as her mother lived until she was in her late 90’s.

I know that she met my grandfather at this boarding school, while in the middle of a prank.  Actually, she was in the process of stealing molasses from the cafeteria, and climbing out the window when he approached.  He helped her down.  They shared a cigarette later on their first date.  She wanted to show how worldly she was and swore she always smoked.  She had never taken a puff before in her life.  She coughed and choked uncontrollably after the first puff, and my grandfather, in between fits of laughter, called her “Tuffy” because she was obviously so dang tough.   He called her this until the day he died, fifty years later.  He loved her.  He honestly loved her.  I know this because he put up with her for over 50 years.  No easy task.

After they married when she was just 17, they tried to have children.   They tried, and tried.  She became pregnant rather easily.  It was the carrying a child to term that seemed to elude her.  Sixteen years after they were married, in 1941, my mother was born.  She was the joy of my grandmother’s life.  She was my grandmother’s heart.  My grandmother had suffered through three miscarriages and would suffer through at least one more that I know of.  When my mother was ten years old my grandmother gave birth to a beautiful baby boy…who died hours after his premature birth.  To say this broke my grandmother would be an understatement.  It forever changed her relationship with her surviving child.

But Nanny rarely talked about her “lost” children.  She instead gave as much as she could to my mother–dance lessons, girl scouts, shopping trips, the love of music and art and fine dining.  On top of this, she and my grandfather gave my mother something she loved–a violin.  And my grandmother was never more proud of my mom than when she was playing her violin.  The sad fact of the matter is once my mom put down that violin, when she dropped out of St. Mary’s College of Notre Dame, she never picked it up again.  But I heard countless times how beautiful my mother played, how special she was for her musical talent.

But with her leaving school, she also left my grandparents, and more importantly, my Nanny.  She had been born and raised in Boise, Idaho.  After dropping out of college, she ran.  Away from my grandparents.  She wanted freedom.  She was tired of being the center of my grandmother’s universe.  She ran to California and met my father.  And I don’t think my grandmother ever truly forgave her.

My grandmother and my mother had a crazy dysfunctional relationship.  They loved each other very much.  They were both alcoholics, so they drank, laughed and cried together.  And they drove each other mad.  My mother, while being the center of my grandmother’s universe, was never quite perfect enough for her.  And my grandmother smothered my mother incessantly.  I remember countless times the phone ringing and my mother crying out, “If that’s Nanny, I am NOT here.”  All of us grew used to lying to Nanny.

What did Nanny teach me?  She taught me how to play Solitaire, Gin Rummy, and that there was more to life than trying to find a man(surprising, since she couldn’t seem to be long without one.)

Who was she, truly?  She was a proud catholic.  She was intelligent.  Republican.  She taught Yoga until well into her 70’s.  She lost her one true love, my Papa Glen, to lung cancer when they were approaching their 50th anniversary.  She lost my mother to suicide 15 years later.  I sometimes wonder how she even went on living after my mother died.

When she was about 93, and wearing a skirt, a man approached her in a bar and asked if anyone ever told her she had nice legs.  Her response?  “Only all my life.”  That was Nanny.   Once, she and my mother were walking down the main drag in Boise, Idaho when my mom was 16, and a car full of teenage boys drove by, whooping and whistling.  My grandmother remarked, “Why, I am old enough to be their mother!”  My mom said, “They weren’t whistling at you mother.”  She was always pretty vain.  And insecure.  For years, she swore that she was 40 years old and my mother was 30.  Once we could do the math and knew a bit about biology, she let that lie go.

She helped me through my parent’s divorce.  She was a shoulder to cry on.  She was fiercely protective of my mom, and never let me bad mouth her…and that was how it should have been.  I miss her.  On this day, 102 years after her birth, I miss her.

She was complicated.  She was Nanny…and I love and miss her still.

2 Comments

Filed under Family

I Hate Working!! Outside the home, that is…

I hate loathe working…outside the home.  Since I went back to work almost four years ago, when the boys were 16, 12, and 2 years old, I have had a love-hate relationship with my job.  Well, that’s not entirely true.  I love my boys.  I hate my job.  There were times, in the beginning, that I loved my job.  It wasn’t the work I enjoyed so much as being around adults for more than a drive-thru conversation.  I worked with some pretty fun, nice people.  Of course, there were a few knuckleheads  (aren’t there always?)

Then, a change took place.

When I first returned to the workforce I did it to help make ends meet, not to pay any major bills.  I could take or leave the job really.  It was just to help out for a while.

Then, our car took a huge dump.  And so, after pouring more than $1000 into repair bills inside of a month, we decided we had to buy a new car.  But, because of Nick’s wheelchair, and the endless miles we knew we would have to put on a car traveling to and from baseball games, not to mention doctor visits, IEP’s, etc. we needed a car we could rely on.  So, we bit the bullet, bought a brand new beautiful van that met all of our needs…and had a payment to prove it.

Only one slight problem.

Now, I need my job.  Now, my job is no longer to make ends meet, but to keep us from going under even further financially.  And I work like a dog five days a week outside the home, getting little sleep, and feeling like the worst mother on the planet.

Monday through Friday, I am the mom who is just trying to get by.  I am trying not to scream at my children for doing–of all things–making noise!  I am trying to make sure the homework gets done, they get something to eat, maybe even bathed (gasp!) The dishes barely get done, the house by Friday looks like a family of chimpanzees have taken up permanent residence, and don’t even get me started on the yard!

And the worst part of the entire situation is that my husband and I get to spend–maybe–an hour together.  We have opposing schedules…when he gets home from work, I leave for work….when I get home from work, he is only a couple of very short hours from getting ready for work.

We are both, 99% of the time, exhausted.

On the weekends, we recover.  We all sleep in on Saturday(unless some crazy neighbor decides to mow their lawn at the crack of dawn, which invariably happens), we clean up the house a bit, are a bit lazy, and then we begin to dread Monday.

By Sunday night, I am in prepare mode.  Prepare for the horrific week I am about to have at work, prepare for the lack of sleep I get during the week, prepare to somehow make it through the week with some semblance of sanity.

I don’t know how single moms do it.  My husband, God love him, is amazing.  He helps out in more ways than I can count, yet I still feel like my boys are getting the short end of the stick because I have to work the schedule I work.

Over the last four years I have missed more of Nick’s doctor appointments, dental appointments, etc, than I care to admit.  He hasn’t gotten the care he deserves because we are just trying to make it through each day as best as we can.

So, now, I am trying to find a way to quit my job…without putting more strain on my husband.  Is it possible??  I ask myself this question just about every day.  Every Monday I am tempted to walk in, tell them I have had enough..and walk out with a smile.  Then, I get my son’s tuition bill, or the ER bill I still haven’t been able to pay, or the 1931 plumbing in this house gives out, and I feel stuck.

Is it possible to be a good mother to Nick and my other two boys when I am so distracted, exhausted and overwhelmed all the time?  It sure doesn’t feel like it.

So, for now, I work….at home and on “the job” and I pray every day for wisdom…and that my boys somehow manage to thrive in the middle of this chaos.

5 Comments

Filed under Uncategorized

God Uses Baseball?

My youngest son, Isaac, is my youngest son because of baseball.

Sound crazy? Let me explain.  We had always wanted another child after Nick was born, but because of his needs, we waited quite a while before even trying again.  There is almost a five year gap between Matt and Nick, so we weren’t concerned about a similar gap between Nick and a younger sibling.  When Nick was four, we decided we were ready.  When I still wasn’t pregnant a year later, I went to the doctor.

Nothing seemed amiss and yet I still wasn’t getting pregnant.  We thought maybe we weren’t supposed to have any more children.  But the desire was still there. So we prayed.

And prayed.

…and prayed some more.

My eldest son, Matthew, was born an athlete.  I say this because from the time he could walk, he turned everything into a game of athletic skill.  His first word besides “mama” and “dada” was ball.  Not french fries, not bottle….BALL. Any ball he picked up, he could do damage with, whether a basketball, a football or a baseball.  Had he liked the sport, he would have been an excellent soccer player.

His first love was basketball.  He would shoot dirty socks through a Teenage Mutant Ninja Turtle laundry basket into the waiting bucket below.  He practiced dribbling with a ball that smelled like strawberries when he was 18 months old.

When he was 3 he got a Little Tykes basketball set.  The hoop extended from 4 to 6 feet high.  The first afternoon it was put together, he was happily shooting the tiny basketball into the 4 foot high hoop.  A friend was over and said, “put it up higher and see how he does.”  So, I did.  First to 5 feet.  The first shot sailed in and as I have heard it on ESPN–NOTHING BUT NET.  So, I put it up all the way to the top…6 feet.  He looked at me and smiled.  Shot the ball…SWOOSH!  My friend turned to me and said, “He is going to be paying your bills someday!”  We laughed but I knew then that he was gifted athletically.  God blessed him with incredible hand-eye coordination (something i definitely don’t possess), with speed, with the ability to see something and mimic it when it comes to anything pertaining to sports.  He is a sponge.  And he loved basketball.  So, we tried to get him onto a team anywhere.   And, for reasons that are varied and ridiculous…it never really happened.

He was able to play one year with a school league but didn’t enjoy it as much as he thought he would.

And in the meantime we tried to have another child.  But it just didn’t happen.  And as Nick requires so much of our time, we thought maybe God was telling us we had our hands full.  We prayed.  We cried.  Finally we said if it happens it happens if it doesn’t then we can be thankful for the two boys we already have.

The End.

Not yet. God answered our prayers with baseball.

We had just moved and thought Matt needed something to occupy his time.  So, we signed him up at the local little league.  He is 12 years old.  It is opening ceremonies and the day is dragging on and I am sitting next to one of the dads on our team.  And I say to this gentleman, “your son looks like his mom.”  And he laughs and says he is not sure about that one because his son is his adopted son…his chosen child.  So we begin to talk.  I had always believed that adoption was a lengthy expensive venture–that only wealthy couples could dream of adopting.  He explained to me exactly how the process works and that no…it actually doesn’t cost thousands upon thousands of dollars.  It just takes time.

That was when I knew we would have another child.  I had always believed that we were promised one more child and that if it was a boy we would name him Isaac because he is the child God promised to us.  A little over 2 years later, we brought Isaac Lee home.

And every time I look at Issac I think, thank God for baseball, and thank God that He brought Isaac Lee safely home.

5 Comments

Filed under Adoption, Baseball, Family, Kids

A Different Life

When I read the prompt from Mama Kat–“What one thing would you change about your life?”, the first thing that came to mind (of course) would be Nick’s brain.  I would love to be able to wave a magic wand and have those gaps filled in.  Wouldn’t I?

I mean…to never know what it felt like to have a doctor tell me that my infant son has this rare crazy diagnosis—Partial Agenesis of the Corpus Callosum?  To never hear those words-“severe brain damage”?  To never have a smug doctor, when I asked him what this means, respond “You are an intelligent woman.  You know what this means.”

If this had happened now, I may have slapped him.

To never have all these questions immediately come to mind–would he be able to have a semi-normal life?  Would he be able to play like other kids?  Would he be able to have a family of his own someday?  Would he even know that he has a disability?

Would it have been nice to have given birth to a “healthy” baby?  To never have known the world of neurologists, behavior therapists, occupational therapists, physical therapists, IEP’s,  cranioplasty bands, AFO’s, surgeries, nephrologists, gastroenterologists,  etc.?

Would it be amazing not to have stares from people ad nauseum?

Would it have been wonderful to never have to tell either the older or the younger son “we can’t do that because Nick can’t deal with the heat/lines/crowds/etc.”?

Would it have been a much easier life to just pick up and go to a baseball game and not look like we had 10 kids with us due to all the stuff we absolutely had to take?

Would I have been happier if I never had to deal with special education–which, for the uninformed–rarely feels special?

Would I have loved to be able to get anyone, perhaps even one of my sisters to watch Nick overnight so my husband and I could actually have just one night to ourselves?

The honest answer is of course.

But…and there is always a but…what would I lose by gaining all of this freedom?

I would lose my Nick.  At least the Nick I know and love with all of my heart and soul.   The Nick I know is assured of his place in heaven.   This is the Nick we were given, and we believe that he was designed.  I may not understand the design at times, but I believe that he was created and we were chosen to care for this incredible boy.

I would also miss out on seeing some pretty incredible things.

Just last night, the youngest said to me, “Mom, I wish Nick was able to do everything.”  He said he felt bad because Nick couldn’t do all the things he could do.  He is six and he not only realizes that Nick needs extra help, he is constantly trying to help him.  And that is a level of empathy and compassion that eludes a lot of adults.

My eldest is fiercely protective of Nick.  And I believe that is just how he is.  But I do wonder if he would have been nearly as awesome a young man had he not seen first hand the struggles and triumphs his brother goes through on a daily basis.  Would he have been as willing to defend others had he not had Nick in his life?

The truth is I will never know.

And what about me?  The first time Nick said “ma” I cried tears of joy.  When Matt said it?  Of course I was excited.  But I didn’t realize the true miracle of speech until Nick uttered that tiny word.

The same is true for every other milestone Nick reached.  I realized that I was witnessing a miracle for every accomplishment, no matter how small it would seem to the outside world.  And that is something I will never take for granted again.

On top of how having Nick (with his wonderful brain) in our family has affected us individually, it has affected our friends and family as well.  People in our circle don’t use the phrase “retard” or “retarded” flippantly.  They understand what that word really means now.

We have also seen who people truly are because of Nick.  You can’t hide who you are from him.  And we have seen both our share of gems and people whose hearts have to be made of ice.

So…yes…I would love to “fix” Nicholas.  But what if upon fixing him we all are so different I wouldn’t recognize or even like who we became?  Yep…this life seems tough at times.  But I love my family and wouldn’t trade this life for anything.

Corny, but true.

12 Comments

Filed under Family, Nick, Uncategorized, Writer's Workshop