My Family

My Family

Saturday, January 16, 2016

The Warrior

To be a warrior is not a simple matter of wishing to be one. It is rather an endless struggle that will go on to the very last moment of our lives. Nobody is born a warrior, in exactly the same way that nobody is born an average man. We make ourselves into one or the other. — Powerpressive

We don't always get to choose the paths in life that we take.  This picture here is of a good friend.  Like myself, she is a parent to children with multiple and complex needs.  

Growing up I was the quiet kid.  I didn't say much at school.  I was extremely introverted.  I just wanted to live an ordinary everyday life.  Grow up, have a job, get married, find out I was secretly royalty and that my biological family was going to surprise everyone when they came and I was a secret duchess of something.  Hey, even the quiet girls have dreams! 

I did grow up, had a fantastic job, an awesome hubby, and was pretty content to coast on by.   Then my life changed.  

I didn't want to sign up for warrior status.  But when my children came along I found out that nice people can and indeed do finish last.  Not all the time, but a good chunk of it.  

My son wasn't getting what he needed.  I was told over and over again that he was "fine".  I was told this by teachers, some family, and the world at large.  They didn't see the battles and the struggles that we went through day by day.  Something had to change.  Someone had to change.  I had to change.  So I did.  Bit by bit.  

It started out with small changes, pushing back ever so slightly.  The small changes worked and over time I became bolder and bolder.  By the time Cary Lynn joined the family I was on my way to becoming a seasoned warrior.  Over the three years she has been with us I have by and large given up on having a quiet and ordinary life.  My days are filled with advocacy, fighting for needs, pushing against a system that often times works against us. 

Warriors aren't born.  They are made.  They become.  My friend has become a warrior for her children.  Day by day she fights for them.  As do each and every parent of special needs children that I know.  There is not one of us who will stop until our children get what they need.  We have to work much harder at it, but giving up has never been an option.  

There are also side effects of becoming a warrior.  When you make the choice to become one it impacts your family.  My son watches me put on my battle paint and draw my sword for justice.  My daughter hears my voice while I am shouting for equality.  Little by little Marvin and Cary Lynn are starting to pick up their own swords and shields.  I see it day by day.  When my son tells people that he needs a break, that they need to hear his feelings. When my daughter picks up her communication device and says NO NO NO NO NO. When she fights against things that hurt her.  Every day I see proof that I am raising warriors.  

Right now my friend's daughter is in the hospital.  Again.  She had a major colon resection, a J-tube placed, adhesions removed, and a new button placed in her.  I went to the hospital to visit her.  She's in a ton of pain.  But she is also a warrior.  She is fighting hard to recuperate and her strength amazes me.  

As I'm writing this I'm also watching her son and daughter.  They too are becoming warriors. Not because they were so excited about all the fringe benefits they are going to get out of it. But  because their mom is a force to be reckoned with.  Her strong drive and amazing mindset blow me away on a regular basis.  

Her son has changed so much this year.  He's become more expressive, tries to take care of his younger sisters, and has stepped up to the plate time and time again.  Her daughter who sits next to me coloring is the spitting image of her mama.  Her mannerisms  and the way she helps me out with my daughter when she is over show me that some day this little girl is going to take the world by storm.  Our children are reminders and visible benchmarks of the path we have chosen.  

Make no mistake.  We will fight for our children.  We are Warriors.  And I wouldn't have it any other way.  

Sunday, December 20, 2015

Confessions of a Disgruntled Pageant Sheep

It's that time of year again.  It's a time for peace, love, goodwill, and sticking your child in the annual Christmas Pageant.

When I was growing up it wasn't optional.  You were in the pageant.  And chances are if you came in at the bottom of the totem pole you were cast as livestock of sorts.

I was as you can probably guess a sheep.  Sheep 3 to be exact.  A role I was dedicated to bring to life. I was actually a little bent out of shape.  I didn't get to be an Angel or the coveted role of Mary.  I was stuck with a paper bag on my head with cotton balls.  But I was determined to bring all the sheepiness to the role that I could muster.

I was quite shocked when I was told by the blessed virgin to shut up and not bleet so loudly.  The shepherd also was instructed to cane me.  So I did what any self respecting sheep could do.  I threatened to bite Mary and the baby Jesus (it was just a doll don't panic).  Mary immediately tattled on me and I tattled right back.  The director gave the usual "everyone is important" speech to which Mary asserted that she was the queen of the show.  The director then mentioned that she would tell our parents and Mary being afraid of a spanking was quiet and I managed to tone my bleeting down. It was a tragic blow for sheep everywhere but the performance went off well and I only stuck out my tongue at Mary when I was sure no one was watching.

Fast forward to today.  I have much more sympathy with the pageant directors of the world having had to walk a mile in their shoes with having to keep peace through countless programs and deal with my own Marys and sheep.

Today I sat in our church and watched our Cantata.  It was beautiful.  As I watched it I looked at my children and fell back in time.

Not so long ago I was waiting.  Just as the world held it's breath all those years ago I held mine.  We had taken all the classes, gotten a room ready.  I had even heard the voice of my own angel, our son's social worker.  She had proclaimed, "You hadn't gotten any other children because you were meant to be Marvin's mama."  I had believed in the promise and a day before my birthday a son was delivered into our home.

A few years later my second angel visitation, social worker number 2 proclaimed, "This is a very special little girl.  She needs a special family.  I think you are just what we have been waiting for." And  a second promise was kept.

I often think if Mary ever wondered what she signed herself up for?  Did she fully understand what she was doing?  Did she ever say, "What did I get myself into?" Or, "What can I teach Him?  I mean He knows everything for crying out loud?!"

I often find myself thinking those things.  As I look at them I remember all the plans I had.  The things I've wanted to do.  The lessons I planned.  But those dreams have been long ago put aside.  I've found over and over again that my children are the teachers and I am just doing my best to tread water.  I've learned to think new thoughts and dream new dreams.

Joseph and Mary chose to have faith and walk a different path.  Daily I have to do the same.  I watch typical children hit milestones that mine may never reach.  I watch little ones grow and remember that my daughters chances of making it into adulthood are very slim.  I see my son struggle to break free from the abuses of his past.  To realize that he is safe.  The way is often narrow and even though there is always a helping hand along the way, I often walk it alone.  It just is too narrow for others and the dangers scare them.  I don't blame them.  The path I walk has made me who I am today and I don't regret putting my feet on it.

The Cantata wraps up.  I look at two children.  One who is happily humming in her wheelchair and the other one who has been asking, "Are we finished yet?!" since the second song and hasn't been able to keep still.  But I'm all smiles.  It hasn't been easy but nothing that we want badly enough is. Like Mary I can say that I am richly blessed by everything.  My children are a promise fulfilled and a daily reminder that the journey I take is worth it.  Merry Christmas.

Wednesday, November 25, 2015

Finding the Thanks

It's easy to be thankful when things go well.  When Festus pulls all A's, is in honors, and is in the top of everything it's great.  When Gloria makes the cheer team, majors in law and is in line for the Nobel Peace Prize it's even better.

When you are a mom to two kids with dynamic needs it can be harder.  Thankfulness can be elusive.

We made it back from Dr. Roman's visit a few weeks ago.  I had hoped for some amazing and dynamic breakthrough with Cary Lynn's CVI.  What we got was just more questions and confusion on the topic of her vision.

Cary Lynn has made some modest progress.  But not what we had hoped for.  It turns out she may have another visual diagnosis in addition to CVI.  Optic nerve hypoplasia occurs when the optic nerve is underdeveloped.  The visual loss can range from mild to severe.  So even if we correct the CVI Cary Lynn may never have a great amount of functional vision.

I held it together in front of the kids but I got back to the hotel and cried.  I worked so hard to help her vision and it seems like what I did may or may not have mattered.

We also had a visit with her GI dr and found out in an x-ray that she has a subluxation in her hip.  I was hoping for great things from the GI doctor and had high expectations.  But finding a gi doctor who is able to work with medically complex kids out here is like finding a needle in a haystack.  He sat and watched my child scream and bite herself in pain until she bled in the office and all he could say is she does not weigh enough.   Seriously?  I wouldn't take my pet rock back to him at this point!!
Then there is my son.  I found out that he needs speech therapy.  I know those of you who know my very verbal child find this incredibly difficult to comprehend.  I know I did.  His OT started noticing things and referred him.  It turns out he has processing and delay issues.  Speech feels that she can help him with this.  Marvin was not pleased that he needed more help.

He also gets another session of OT in the evenings.  This is a group session with other kids.  He's a little more excited about this one but for me it's just another therapeutic activity that I wish he didn't need.

As if my life isn't exciting and glamorous enough right now Marvin managed to get bronchitis.  I took him in today.  Yay, the party never stops for us.

Soooooo, since we have had so much happen to us all at once, which is kind of how it rolls around here, it can be hard to find thanks.

Yet despite it all, I am thankful.  Today my phone has rang all day.  I've had lots of people check in and offer support. I have an amazing network of friends.  I've also got new ideas to help Cary Lynn deal with her ever increasing pain levels.  I have a wonderful palliative care team who's sole purpose is helping our family find a great plan for Cary Lynn.    

I'm also thankful that we got to the Dr. today.  Marvin is starting some meds and hopefully he will get some much needed rest.  I'm also thankful that I was smart enough to purchase things for our own Thanksgiving meal since my children religiously seem to enjoy getting ill over the holidays.  Due to Marvin and my food allergies I decided it would be smart to make a meal we could eat and maybe puree some for Cary Lynn.  I'm thankful we will have a nice meal to sit down to.

Marvin is also making progress homeschooling.  He has gone from a first grade level to a second grade level.  For us that is a big deal.  He still struggles but he is trying so hard and now that he doesn't feel stressed or pressured his learning is starting to take off.  I'm thankful that he feels safe and that learning has become enjoyable once again.
Most of all I'm thankful for these two.  These kids are amazing.  They have lived through so much and yet find reasons to smile every single day.  They are brave, strong, and proof that you can overcome just about anything that life throws your way.  And for that I am thankful. 

Sunday, November 1, 2015

The Dying of the Light

I wake up, rub my eye, grope around my nightstand, and find my glasses.  When I put them on the world falls into focus.

It's also one of my favorite seasons.  I spend hours looking outside and enjoying beautiful drives as the leaves blaze and put on a spectacular show.  Marvin brings me "leaf bouquets" a tradition we started many years ago.  We talk about trees and the seasons.  I taught him how to make leaf houses like my sister and I used to do.  Heaven knows we have enough leaves around here! I hear my grandpa's voice in my head describing the trees.  It brings back memories of our walks in Arkansas together.  My husband and I talk about nature and the pretty things we see and enjoy.  He also expresses worry over deer.  When you live out here deer and bears (yes we have bears) can be a problem.

But one member of our family never participates in fall discussions.  One member remains mysteriously silent.

When we brought home Cary Lynn I was introduced to CVI or Cortical Vision Impairment.  I was told that there was nothing much I could do.  Plus we had so many other health issues on our plate I wasn't worried about it frankly.  When you have to fight for your child's life piddly things like sight take a back seat.

When I came up for air I started learning about CVI.  I took courses.  I became educated because where I live there is a sad lack of education with disabilities.  I learned.  I made connections with the top dogs in the CVI world because I needed their knowledge and support.  I became very excited the more I learned.  The brain and its functions became very time consuming and all absorbing.

We worked hard.  Very hard.  We also saw Dr. Roman for the first time.  She pioneered the CVI movement.  She took two hours with us and we left with lots of useful tips and helpful information.  I was ready to conquer the world!

The years passed.   In two weeks we will go up to Pittsburgh again.  But this time I'm not looking forward to it.  In fact, I'm really dreading it.  Not all of it.  I am excited to take my children and go to the amazing aviary and museums they have.   To enjoy a mini vacation of sorts.  I even get to visit with some of my husband's co-workers in Pittsburgh branch.  Those things will be enjoyable.

What I won't enjoy is the heart of the reason we are going there.  We go back to Dr. Roman.  Don't get me wrong, I enjoy Dr. Roman.  She is a wealth of knowledge.  What I won't enjoy is when she looks into my child's eyes.  Instinctively I know things haven't gone the way we hoped.

I hoped that she would climb the CVI scale.  That she would just shoot ahead.  That when we went back she would have amazing sight gains.

But it hasn't happened.  For all purposes her world remains cloaked in shadows.  In mystery.  Her little blue eyes that seem to look into forever have never seen the faces of those that love her the most.  Her little pupils barely react to a flashlight being shone on them.  One eye does nothing at all. It used to, but about several months ago it just gave up.

The changes didn't happen suddenly.  They have come slowly and gradually.  Like a thief in the night.  So I have a feeling that when we sit down with the good Dr Roman it may not be the meeting I had so longed for.  It isn't an easy pill to swallow.  Of all of her disabilities this is the one that I grieve the most over.  I will be fine in time and we will adapt to it, but I hate the fact that she has lost one more thing in a body that has already lived through war.

At the middle of it all is the little warrior who stole my heart.


Adorable, quirky, feisty, and a fighter.  Whatever the outcome of the appointment is I'm still proud of the progress we have made and the hurdles she has overcome.  With or without vision she takes the world by storm.  And that is good enough for me.

Tuesday, October 13, 2015

Happy Birthday Baby Girl

Dear Cary Lynn,

Tomorrow you reach a new milestone.  You turn 4.  For others it's just another day at the office, but for you it's a miracle.

When we first met you you were tiny.  So very small.  Then I picked you up for the first time.
You opened your eyes, looked at me, and went right back to sleep.  You felt just right in my arms.  Like you always belonged there.

We took you home.  You took us on many wild rollercoaster rides.  We lived in the hospital every few months when you first came home to us.  Doctors told us not to expect much out of you.  But you would just smile, laugh, and bite them.  I knew that you belonged to us.
So we adopted you.  We knew that it was going to be hard.  Nothing that means anything ever comes easy.  But you are worth it.

Some women complain that having children robs them of their identity.  But when you came home to us I found out who I was.  I became a mother, cheerleader, and advocate.  You helped make me strong.  Because of you I feel empowered to do things that I may not have done before.  You bring out the best in me.

Happy Birthday Cary Lynn.  You make the world a better place and I'm proud to be your mama. Keep shining my little star.

Love,
Mama

Sunday, September 27, 2015

Moving Onwards

I like things a certain way.  I believe I have discussed this before.  The same routines, jammies, my spices alphabetized, gluten free products in the pantry third shelf on the left, Cary Lynn's dresser drawers are even labeled so her attendant can put things back just so.

But when you have two special needs kids you often live in a snow globe that gets tipped upside down and shaken.

For Cary Lynn despite her complex diagnosis she is often times an easier kid to "fix".  Apraxia, no biggie give her a communication device, check.  Cerebral Palsy?  We bring on the therapies, pain meds, make accommodations, get adaptive equipment.  Check.  Diabetes Inspidus?  Extra liquids, measure urine output. Check.  I could keep going but I don't think you want to know how we deal with constipation and if I listed the bazillion other things going on you would probably be ready to go to the next blog about the joys to knitting with organic sheep wool. (yes it does exist and yes I did read a post).

For everything I get thrown at me with Cary Lynn I get back up pretty quick.  You see I can fix those things.  If I can't make it all the way better I can come pretty darn close.  I can make order out of medical chaos and all is right in her little world.

But what happens when you can't just fix everything?  When you can't just slap an AFO on and call it a day?

Marvin is by far the kid most everyone looks at as the "most typical" kid in the family.  Because you can't see abuse.  You can't see prenatal drug exposure and shaken baby syndrome.  They are invisible scars.  But they are ever present in our daily lives.

Since I started home schooling Marvin I knew that he was behind.  What I didn't know was how badly behind he was.  Not in everything.  I'm thankful that he has a natural curiosity about science and the world around him.  That he's a cracker jack speller.  But he kept getting passed along.  So we go slowly day by day.  We often repeat lessons because mastery takes time.  Tests are read orally as he scrambles the order the words are in.  Typing is encouraged alongside of writing.  Breaks are frequent for sensory needs.

We also were able to increase his OT.  He has a great person he sees weekly and she is working on lots of different things with Marvin.  These things have helped.  But he was still having panic attacks. His OT suggested counseling to help work on putting shattered pieces back together again.

I drug my feet.  Surely he was getting better.  I was doing all the right things wasn't I?  But then Shannon left for an overnight and Marvin had a full blown all out anxiety attack.  He was scared daddy wasn't coming back again.  The abandonment, hurt and neglect came out all over again.  It was at that point that I figured out that even with everything I was doing I just couldn't make this better.  I hurt so bad for my son.

So after making many calls and talking to places we found a spot.  It's a nice little office and they try to make you feel comfortable being there.  We went for our first appointment last week.  Marvin got out of the car and held my hand. I hadn't really gone into massive details about why we were there, just the lame parent spiel that we were going to go to a talking doctor that can help us with choices or some parental crap drivel.  Marvin knew.  He's no dummy.  He looked at me and said "I'm sorry that I can't be like everyone else.  I'm sorry I'm broken."  Talk about ripping out my heart and stomping all over it.  I just wanted to cry.  And run home with my son.  I looked at him and said, "Marvin I don't want you to be like everybody else.  I love the Marvin I have.  I wouldn't trade you for anyone else. But you feel scared and anxious so often that maybe talking to someone can help.  Trust mama." Inside he crawled on my lap and I had one heck of a time filling out paperwork.

We were called back and introduced to our therapist.  We went into a nice room with trees painted on the wall and toys.  Marvin played with toys and met the rats that they keep as pets.  He slowly warmed up and relaxed.  The therapist and I talked for over an hour and even though I still wish I could wave a wand and fix it I knew when we left we had made the right choice.

So now weekly Marvin will get the support he is long overdue.  He has a lot to work through.  I grieve for the fact that he has so much on his plate and he's so little.  He shouldn't have to have gone through this.  But having people who care about my son and wanting to help him makes me feel better.

Putting the pieces back together won't happen overnight.  This is a lifelong process.  It will take time. Lots of it.  It will also take patience and faith that we are going in the right direction and even though our choices for Marvin may not fit society norms at this time they are what Marvin needs to be uniquely Marvin.  And I wouldn't trade that for anything.

Tuesday, August 11, 2015

Fork in the Road

Some people get really excited about changes and a chance to try something new and exciting.  They jump at the chance to get out there and seize that rainbow!!  Reach for the sky!!  Whoohoo!

I am not one of them.

I am the girl who has drank out of the same two coffee mugs for the past million years, I have had the same pillow and pjs for longer than I've been married and I really don't care that the PJs are too big now and the pillow has a gaping hole that most of the stuffing has fallen out of (my husband calls it roadkill).  I have the same morning routine, the same hair style, and even though my laptop is only held together by duct tape and prayers right now and my new laptop is ready to go I'm still typing on the old one praying that I don't set something on fire.  You get the idea.  

So when change occurs I don't always embrace it or get excited.  Usually I resist with every fiber of my mortal being.

When we adopted Cary Lynn I gave up a fantastic job as a teacher.  I missed teaching.  I had a hard time adjusting to being a stay at home mama.  But Cary Lynn took up a lot of time and energy.  In the meantime Marvin started to fall apart too.  He went from loving school to dreading it in the course of his first year.  The next year wasn't much better and after fighting non stop for things to change we pulled him out of public school and started him in private school.

We also had him tested.  We found out he had processing disorders, dysgraphia, ADHD, and other impairments.  He also tested off the charts in some areas.

Confused?  So was I.  I am privileged to be a mama to a child who falls into a category called twice gifted.  It means on one hand he's really smart.  I mean not mama thinks I'm all that and a bag of chips, but actually really smart.  On the other hand he has a lot of learning disabilities.  So many that it's hard to see the smart sometimes.

So when I sent the info to his new school I was assured that there was no problem.  Marvin tried hard but when your curriculum is heavily based on neat handwriting and you have dysgraphia then you have a mix for disaster.  I was also getting pressured to pull him out of his therapies.  It was even alluded to that if I spent more time reading him the bible maybe he would fall in line.  Seriously?

Then I hit my fork.  Marvin's CAT testing results came in and we tried treating his ADHD with medication.  Let's start with the medication.  We tried a mild stimulant.  It made him sick.  We ended up taking him to an after hours treatment place thinking he was having an appendix attack.  Nope, just the meds.  So that was a no go.  Next we tried another kind.  This on made his blood pressure bottom out repeatedly.  My son threw all the chairs in the kitchen and tried to launch himself onto my stove top.  I called my husband and he came home.  We took him to the Dr the next day after I had frantically called the after hours nurse 5 times.  At that point the Dr.said that he was uncomfortable providing Marvin with ANY meds.  I said that was fine since I was uncomfortable with him taking ANY meds!

In between meds I got the CAT scores.  I know you can't base life on test scores.  But my son's scores knocked the breath out of me.  First his vocabulary was on 12th grade level.  His spelling 5th grade. Then I looked at his math, reading comprehension, and the rest.  1st grade levels.  Every last one of them.  And they had passed him to third grade!!!  So I called the school.  Left a message.  I also drug out his work from last year (yes I saved it all!) erased a bunch of random papers and set him down. Guess what he knew? Bubkis.  Nada.  Zilch.  I asked him if he was sure and couldn't he just try??? He told me that he was dumb and it didn't matter.  I told him he was smart and it DID matter.

You see Marvin also has shaken baby syndrome.  Because his bio mom was strung out all the time.  And let's not forget being born meth addicted.  So I sent Marvin outside and had a good cry because the school told me that they "had this".  What did they do with him?  So I gathered my wits and after a talk with the school put the story together.

Marvin is a good kid.  He goes to school.  Smiles and is charming.  He's polite.  The teacher had her hands full with 1st and 2nd graders who did have some behaviors.  Marvin won't ask for help and no, the school is not willing to make accommodations.  They are a small private school and cannot do this.

So there was my fork and at this point you're probably wondering where the heck I'm going with all of this.  I'm getting there, hang on.  We had to decide what to do.  Right now we can't send him back to the private school and we can't send him to public school.  I don't have hours each day to live on the phone, at IEPs and fighting to get my son caught up.

So our family is making a huge transition this year.  Marvin is going to be home schooled.  Yup.  This idea was actually suggested by some public school people.  I can work with Marvin and catch him up.  There is no way he can keep going forward when he is already so far behind.  We need to teach him differently.  He also needs to step up his OT and his other Drs since he is a med lightweight.  So we need to teach him how to handle his ADHD other ways.

Lots of people have said I don't know how you can do that.  But when you no longer have a choice you would be amazed at what you CAN and WILL do for your child.  Not everyone is thrilled about it either, but we have limited resources in this area and I've exhausted them all.  Trust me I looked long and hard at other options before this one.

I will be working hard with him.  I've talked with his support team and we've found curriculum that will challenge him and help catch him up in weak areas.  We are making sure he has plenty of social opportunities with co-ops, and extra curricular activities (he will get more than he did in school. Ask our local moms about silent lunches and recess time being taken away so kids can test).  He will also get the help he needs to manage his needs so he can be in a better place.

I resist change, but sometimes it becomes necessary.  And sometimes that fork in the road really does take you to a better place.  I know we can do this.  Marvin and Cary Lynn are both smart kids who need to do things differently.  And for their sake I'm willing to try.