My Family

My Family

Sunday, July 9, 2017

I'm Good Enough (and so are you)

Never judge someone without knowing the whole story.  You may think you understand, but you don't. 

I saw her in Walmart a few weeks ago.  You know who I'm talking about.  The woman who brings in her three half naked kids jumping from the shopping cart and running around.  The youngest is up front drinking soda from a baby bottle.

I roll my eyes.  I think my mental thoughts and buy my organic fruit.  As I'm walking by other women start whispering and pointing at her.  A few snide comments are said and titters follow.  The woman walks by.  I KNOW she's heard.  She tries to keep her head up but I see it.  Tears.

A few aisles later I run over her son.  Literally.  Because I pay attention (insert eye roll).  He's O.K. He had opened a box of cereal and was happily eating it.  My son and I happen to have an affinity for that magical leprechaun and his marshmallows as well.  I apologize to mom for trying to take her child out.  I smile and tell her that we are addicted to that cereal as well.  We talk.  She's a single mom working three jobs.  She's trying to buy food at the only time she has available.  Her kids are tired, she's tired, and all she wants to do is be at home in bed with her laptop (did I mention she's going to school so she can provide a better life for her kids?).

I'm not telling this story to show what a paragon of humanity I am.  Believe me, I'm not.  Recently there have been a wild fire of stories passed around social media.  Stories that make you stay awake at night and think over all your life and parenting choices.

When did it become OK?  When did finger pointing become OK?   It's been around, that's for sure. Spank them, don't spank them.  Send them to time out, no wait, don't do that!   Did you try an organic supplemental diet?  How about making sure they get this?   Use sunscreen, no wait don't use THAT sunscreen!  Use TV, nope don't use TV.  Computers help them learn, NO TECHNOLOGY IS OF SATAN!!!

Do you have a headache yet?  Are you questioning every choice you've ever made? Are you going back and questioning every choice your parents made, because after all, it's probably their fault and there are about 40 articles that prove it.  I mean, if it's on the internet it's probably true, right?

STOP!!!!!  BREATHE!!!!  Listen to me.

Yes you can spend your life feeling like crap.  You can go to bed at night and worry that you are screwing up your kids.  There are plenty of articles that will tell you that one.  I can list at least half a dozen on how my kids are going to be awful.  I don't spend enough quality time with them.  We don't go outside enough.  I let my son watch TV.  I let my daughter have her IPad.  We ate marshmallow cereal for dinner last week.  My daughter loves sweet tea and right now it's the ONLY oral liquid she will take.  So guess what she's been buzzing on?  So as you can tell my kids are on the way to a life of hard crime and cavities because of the lifestyle we lead.

I used to feel bad.  But now I feel something else.  Angry.  Because it's not OK.  It's not OK to sit on your high hat. I wish the writers would spend less time on those pieces of trash and more time looking at ways they can help out these "fallen women" (I'm open to laundry service and hot meals). At the end of the day I'm doing the very best I can.  Am I going to fall short, yes?  Am I going to mess up?  Yes.  Am I going to push through and keep trying?  Yes.

Guess what else?  You are doing the best you can to. You are a good parent.  You don't need parent shaming articles to make you feel bad.  You are human and you are trying hard.  The people who are closest to you can see that.  And sometimes when the world isn't running over your kid in Walmart they can see it too.

What we need is less on what we are doing wrong and more on grace.  Give yourself grace.  You have a tough job.  There is no book, TV show, article, psychic, or expert that knows those tiny people better than you.  Remember that and give yourself the grace you deserve.  Rest refuel, and get back up in the saddle and try again.  You are a good parent.  You can do this.  I believe in you.

Monday, June 26, 2017

No Magic Bullet

When I speak in conversations about my medically complex kid the listener's eye automatically drifts to the little girl in a ponytail and wheelchair at my side and nods knowingly.

What they fail to identify is the young boy running around and hanging upside down.

Sure, I'll give Cary Lynn her due.  She's not easy.  But even with her rarer diagnosis of Diabetes Inspidus and Dysautonomia, we are still able to treat her and keep her comfortable most days.  I have meds from here to Timbucktoo that we give her, but they work.

Last week I took my son to our Developmental Ped.  I adore her.  She's thorough, spends hours with you, and really hears what you have to say.  This was Marvin's first visit to her but because he's seen her in action with CL he was good to go.

She spent three hours with us.  In that three hours she uncovered a few more issues that we will see more Dr.s about.  Sigh......   But when you are trying to put the pieces of a unique puzzle together you do what it takes.

The one thing she was concerned about was Marvin's migraines.  He's had really bad ones on a regular basis.  Her words were, "I know you said you really aren't wanting more medication, but I have one that is tolerated very well.  I think you may want to think about trying it to see if we can help him feel better."

Ahhhh, my Achilles' heel!  When we have our children all we want to do is protect them.  Watching them hurt or suffer makes a mom feel helpless and miserable.  Bottom line we just don't want our kids to hurt and will move mountains to make it stop.

"I don't know", I murmured, "he just doesn't do well with medication.  We've had so many side effects."  But I was wavering.  I wanted something, just this once, to work.  Marvin was already starting to rub his head, a telltale sign.

"Tell you what, you can half the dose!"  With those words, fate was sealed and I took the prescription home. Half a dose may work OK.  I won't know unless we try, right?

Wrong!!  Marvin took the dose before bed as directed.  The next morning I waited for him to get up at his normal time.  No sound.  I sat down in a weirdly quiet kitchen and sipped my tea trying to ignore the tendrils of fear that were starting to rise in my head.  I sat down at the table stubbornly.  I scolded myself.  Why can't I stop worrying?!  This is ridiculous!  You are a grown woman, behave!!!

That lasted about 5 minutes.  I decided just to peek in and see what was going on.  When I came in the dog started making her "Timmy is in the well noises".  When she makes that sound I pay attention.  I came over to the bed.  Marvin was pale and glassy.  "I don't feel good mama.  My chest hurts."   With an elevated pulse I started making calls fast.  Shannon came in and sat with Marvin. My world was shaken once again.

Shannon took Marvin to the Drs right away.  I got Cary Lynn's supplies and followed behind.  I remember making a call to my mother-in-law and a friend, but don't remember much else.  Except crying.

We were lucky.  Not that this is a huge shock, but Marvin is allergic to this medication as well.  It caused a rare side effect.  His heart was skipping beats.  So he's not able to take this or any medication that falls in this class.  After a quiet weekend and lots of resting, legos, and good books most of the med seems to be out of his system and he's back to his normal self.

I don't think I am though.  It seems like I eternally hope for a magic bullet.  Something that can help him feel better, reduce pain, and bring world peace.  Not too much to ask for, right?  But after this go around I realized that I may need to start thinking a little more outside the box.

There is no magic bullet.  Marvin is unique.  His therapists describe him as a unique exception to the rules of his disabilities.  His Drs describe him as unique.  While I'm always good with marching to our own rhythms, just once it would be great if he were an average joe in one department.  But since Marvin isn't going to change, I'm the one who has to.  I'm going to have to step out of the bounds and find different ways to work with what is going on.  To find a unique way to handle the unique situation we are in.

What I do know is that Marvin is resilient.  His ability to bounce back from the situations life throws at him make him a tough cookie.  We will figure this one out and together we will move that mountain.

Sunday, June 11, 2017

Shades of Grey

The human brain has 100 billion neurons, each neuron connected to 10 thousand other neurons. Sitting on your shoulders is the most complicated object in the known universe.- Michio Kaku

Tell me about it......   The brain is complex.  Add to it one child who on the surface look deceptively "normal" and you have a recipe for disaster.

"He doesn't have ADHD, all boys act that way"
"He can't have Autism, he's social"
"He doesn't have food allergies, let him eat whatever"
"He'll just outgrow that."
"He doesn't have mental illness."

On and on the advice went and still goes.  For children with hidden disabilities life can be more challenging than a child with an obvious one.  Services are openly showered on my daughter but it is like prying a crocodile's mouth open with food in it to get help for my son.

It started young.  I had lots of worries.  I would watch him like a hawk.  Something wasn't right.  I was assured that he didn't have ADHD.  That another child in the class did but not him.  By a teacher misdiagnosing my child valuable time was wasted in getting services.  That's what happened year after year, time after time.  Concerns were brushed aside.

But I persisted and I insisted.  Guess what, people were wrong.  As time passed testing was done. Now that my son is 10 he finally has the services and team in place that he so desperately needed back when he came home at 18 months old.  They say it's never too late, but in some ways it is.  And if it's not late it's going to be harder to correct things.

It's also hard to know where he fits in.  He "passes" in so many things.  He is able to blend in.  When we go places most praise him for being a good big brother.  He plays with the other kids in a game.

But over the years he's learned how to play the game called life.  He puts on a good show.  The outside world doesn't see what happens.  They don't see the child who melts down after spending a day at a family reunion because he's so overwhelmed.  The teachers don't see him come home from school and look at his spelling notebook and watch him cry because he doesn't understand the instructions (to be fair dad and I didn't get what they wanted him to do either.  When I was growing up we brought home a list and studied it.  You know, when dinosaurs roamed the earth.... Now we had to choose from A la Cart activities?!?!).  Or how we've had to teach him to look at labels in all the foods he picks up so he can avoid making himself sick.

I could keep going, but it makes me mad and a bit sad too.  I've long ago come to the conclusion that it's really hard to budge people who aren't willing to look outside the box.  Who are trapped in their notions.  You can't break through glass with a feather.

But it's worth the fight.  I'm thankful for Children's Home Society.  They were the first people to step in and really hear what I had to say.  The ball started rolling.  I'm thankful to the sharp GI doctor in Norfolk who was looking over my daughter and saw my son double over in pain.  The visit that was supposed to be about her weight rapidly shifted to a little boy who stood with tears in his eye and a Dr. who told me, this isn't normal.  For the UVA team who spent days testing him and came back with answers.  For his psychologist who is on speed dial on my phone.  Who helps me understand how to parent a child who has lived through trauma and who gives our family hope.  For his ABA team.  We have the cool Mr. Gabe who comes and plays with him and slips in activities that force him to think about things a different way.  So we keep on fighting, hoping that we can make it better for other parents who come after us.

I'm mostly thankful for my son.  Without him I probably would have gone through life being one of those people who think inside their happy box.  He takes everything I thought I knew about parenting and shakes it and turns it upside down.  Then he burps.  Because there are some things that fall within the realm of normal boyhood.  I don't quite know what the future holds, but I'm happy I get to be along for the journey.

Wednesday, May 17, 2017

Becoming Barbra

It happened again the other day.  We were out shopping and Cary Lynn was getting some extra attention.

"Oh aren't you just a doll baby?  Wook at how sweets you is."  Meanwhile, the "doll baby" was rolling her eyes.  When asked how old she was I said 5.  I was then told about how God sends precious angels to us all.  When I jokingly quipped that the "precious angel" just bit her brother ten minutes ago I was quickly reassured that Cary Lynn didn't have the sense to come in out of the rain.

I left at that point.

It's hard sometimes.  When the world is presented with children who have multiple disabilities assumptions are made.  Over and over.  Most of them fall into what kids can't do.  Or won't ever do. The bar is set so low I feel like I'm in a round of limbo.

One of the hardest things has been establishing that Cary Lynn is her own person.  That she has her own thoughts, dreams, and way of seeing the world around her.

When we brought her into our home at nine months old many applauded our decision.  We were taking this poor disabled child home with us.  Cue the sainthood music!!

I'm going to tell you a little secret.  We didn't pick Cary Lynn.  She picked us.  At day four of our first of many hospital stays when my world was unravelling bit by bit with every scary new doctor proclamation my child bit her first of many medical professionals.  After the Dr. left I looked at her and said, "You are my kind of people.  I think you'll fit in well with us.  Let's get you well and then you can come home to your family."  This kid had the nerve to look like she was pondering this!!!  I mean hello, I'm not that bad of a human right?   So I tried again, "C'mon, it's not like this is a Paris vacation.  You have a family that wants you so badly.  A mama, daddy, and brother.  And a room full of new toys!"  Well the word toys sealed the deal and I felt like this little human is going to challenge every last thing that I said and did henceforth and forever more.

And she has.  I am constantly kept on my toes with a child who is intent on outwitting me at every turn.  We clash frequently.  Cary Lynn, or Barbra, she renamed herself a couple of years ago at an educational consultation is a girl who knows what she wants.

Treat her like an imbecile she will ignore you or roll her eyes at you.  Tell her that it's time for therapy and you will hear the power of her lungs three blocks down the road.  Offer her ice cream, frosting, lollypops, or any sugar laden treat you are her best friend for life.  Read her stories and watch her eyes light up.  Ask her to use her communication book and watch her try to throw it or look blankly into space.  Engage her and see the fire within.  Teach her something new and watch her process. Bring her to a doctor that treats her like crap she will place a well deserved kick to the shin, a bite, or scream in their face.

She is her own person.  Don't get me wrong, she's also a part of a family unit.  But I can't always speak for her.  Because I'm not Cary Lynn (or Barbra).  I'm mom.  Now I get to call all the big shots like bedtime (which she ignores), healthy oral meal choices (which she spits in my face and then crowns for sugar), educational television (which she will nap in front of until the tv is magically changed to Peppa Pig), and her therapy schedule(which she takes off her diaper and pees everywhere).  So at this point we really see who's in charge around here.......

My daughter is amazing.  She's smart, loves to laugh, enjoys violent fairy tales, Peppa Pig, Peg and Cat, her doll Cynthia Arvella, and has her own way of doing things.  She keeps me on my toes and I can honestly say every day is an adventure around here.  Someday maybe the world will see the same thing that I see. They'll look past the disability and see the ability.  They see a whole new person. They'll see Barbra.

Tuesday, May 2, 2017

Celebrating Mother's Day

Well, I did it again.  I vow I won't every year but somehow my newsfeed finds the most depressing articles on Mother's Day and having children with special needs.

Before you start yelling, hear me out.  I KNOW every day is not a rosy ray of sunshine with unicorns dancing in the meadows.   I had to fight my almost ten year old to get out of bed and go on a fun field trip today (I'm so mean, I know).  He wanted to stay at home and cuddle.  I felt like a heel.  I also has to listen to my five year old wail all the way home because the John Denver CD bit the dust and she couldn't listen to Thank God I'm a Country Boy in a loop.  Then I had the nerve to put her in her gait trainer before our appointment and insist she have some physical activity before she's stuck in the car. If you count eat shattering screaming as proper lung development, we are all set.  So I know and I sympathize.

But there are so many amazing things.  Things that would never have happened had two children with medical conditions had not have shown up and tipped my world topsy turvey.  Here are five positive things that I've learned along this wild ride.

1. There are some amazing and strong women out there.  

Don't know any, look in the mirror mama.  You are strong and I admire you.  I know that you shed tears and worry that you are messing up.  I'm going to let you in on a secret.  We ALL worry about that.  I don't care if you have a child with or without disabilities.  Parenting is hard.  You are doing a killer job of it even if you don't think you are.

2.  Every day is a new chance.  

Even though we aren't promised tomorrow, sometimes it really helps to look forward to it if today has gone in the tank.  Lost your child's John Denver CD?   Tomorrow will be better because I can spend tonight burning a new copy!!  You messed up and questioned your ability to parent a Chia Pet, let alone this little human with so many extra needs?  Breathe, and see point number 1.

3.  A Village has my back.  

In the age we live on a few clicks connect me to people that I may have never met 15 or so years ago. Sometimes it's hard with appointments and Drs. to find time, but it's worth it.  Whether you have a village of two or two hundred it's important to find people who will love and care about you and your family.  My village knows my faults and flaws and embraces me for who I am, not what I wish I was.
4.  We become. 

In this journey we are often stretched to our limits and breaking points.  Yet we don't back down.  We become advocates. Because when you hold that little one you give up what you want and fight with every breath for what they need.  It's not easy but we become stronger and more determined to find cures, get testing done, locate the best care possible.  We become what our children need.

5.  Our kids are here for a reason and a purpose. 

I don't believe that there is some great cosmic zap and randomness occurs.  There is a purpose and a reason, even if we don't understand why.  Each person has a destiny to fulfill.  Even though they may have limitations and there is a reality my kids have a purpose that they were uniquely designed for and only they can do.  So does your child.

These are just a few reasons to celebrate being a mom.  There are so many out there.  Happy Mother's Day to some amazing moms who are advocating, standing strong, and above all loving their kids and seeing the amazing potential that they possess.

Thursday, March 16, 2017

We are the Warriors

You see us everywhere you go.  We may be in the shadows or in the limelight.  We may be loud or quiet with deafening silence.

We are forged out of endless battles with doctors, therapists, insurance, schools, paperwork, research, and advocacy.  Everyday we gear up to fight new battles and rise to new challenges.  Our minds are sharp, our hearts are strong, and our knowledge is a force to be reckoned with.  We put on our armor of strength daily.

We gather on battlefields ready to fight for the thing that means the most to us, our children.  We sit in hospitals holding their hand tight and fighting for their lives.  We go to therapies and press everyone to take one more inch.  We can't afford to loose, the cost is too high.

To the world we may seem brave, but we aren't always.  For every victory we have miles of defeat behind us.  But we are driven to try just one more time.  We may be scared to death, but we rise up and do it anyway.  We don't have a choice.  Failure is not a word we embrace.

Our children have multiple needs and because of them we have changed.  We have taken on roles that are new to us.  We have stepped out from the sidelines and walked onto enemy territory.  Because of them, we dare to do things outside of our comfort zone.  We push harder and battle on.

We are the Warriors.  We are the storm.  We will battle and we will win.  

Friday, February 24, 2017

Finding Their Own Beat

If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.  -Henry David Thoreau

We all dream big dreams for our kids.  I'm no exception.  When you sit and gaze lovingly over your child's cradle, watch them play, and dream about what amazing things they are going to do.  Your son picks up a bandaid and you see a doctor.  Your daughter draws that first picture and you see the next O'Keeffe.

What happens when your dreams crash with reality?   What happens when your dreams don't match up with your kid's life?

This is what my struggle has been these couple of weeks.  Trying to find new rhythms in our life song.  It's been hard for me.  I don't like watching the kids struggle. I don't like seeing them fail.

When your son says that he can't keep his homework straight and the words swim and the tears fall. When your daughter can't go to the super awesome program that you've been on the waiting list for two years for because her body isn't strong enough.

I hear the words of Marvin's doctor in my mind, "It must be so frustrating.  He's smart but the doors are locked in certain areas of his mind and the key is always three steps beyond his grasp."  Cary Lynn's dev ped pretty much says the same thing every visit, "Her mind is there and it's trapped in a body that refuses to let it be free."

I've gotten used to letting things go, it's just a fact of life.  But it doesn't make it sting less.  My kids will always struggle more than most kids will.  But they have their own paths to follow, not my path. My path would take away the challenges and obstacles that they need to equip them.  To make them strong.  They need a chance to travel their paths, not mine.  Their paths will teach them strength, grace, humor, and courage.

They won't be easy paths, life never is.  But they won't have to travel alone.  I'll be right there with them.  Stepping to their music and finding their unique songs.