My Family

My Family

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.


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.

Sunday, July 5, 2015

The Umbrella Kid

Well they do say when it rains it pours.  In my house umbrellas aren't just for preventing rain from soaking you.  We live under the umbrella of diagnoses in our home.  It's part of the joys of living with a medically complex kiddo.

Cary Lynn is a medical enigma.  She delights in 3 am solos, her stuffed animals, and keeping doctors scratching their heads.

An umbrella diagnosis is where they take a whole bunch of problems, group them all together, and say voila!!  Here you go, take a whack a doodle at that!  I kid you not.  I sometimes think the way they come up with these things involve a dart board, stiff rounds of expensive scotch, and a parker brother's Ouija board.  They sit together, take some shots, consult the position of the stars, and make lots of notes in Latin so it looks like they know what they are talking about.  Then they have meetings, press conferences, and write it down in big medical journals.  Which are passed on to doctors and nurses who present the information to us while they try to look like they perfectly understand what is going on with my child.

Cary Lynn has many, many, many diagnoses.  I kid you not.  Last time her chart was updated she was up to 30.  Some are little and frankly not worth the space they take up on paper.  But some are bigger.

Three of her biggies are umbrella diagnoses.  Cerebral Palsy is considered an umbrella diagnosis.  CP is a large disability category.   For some people in the CP umbrella the only trace of it you see is they hold a pencil a little funny.  On the other end of the umbrella you have children like my daughter who cannot roll, sit, or do a lot independently.

The other one is CVI.  This one is also a big big umbrella.  From children who function so well visually that you would never know to children who are very visually impaired.  Cary Lynn falls right about in the middle of this one.

The last one is a new diagnosis that we just got official confirmation of last week.  Dysautonomia. It's a big word, but once again I'm stuck in umbrella land.  If you look up the definition you will even see in several places that it is defined as an umbrella term where the autonomic nervous system malfunctions.  It can range from mild issues like gi track problems to Parkinson's disease.  I sat down with neurology and had a very long and fun filled round of what type might Cary Lynn have. Because there is a really big difference.  There is the kind that you treat the symptoms and go on slogging or there is progressive.  In the case of the latter it's not a good prognosis.  At this point the medical community is still consulting the dartboard and the Ouija to figure out what category Cary Lynn is in.

I hate being grumpy and disgruntled.  But in a way I really am.  To me an umbrella diagnosis isn't a real diagnosis.  I am the type of person who really wants a clear cut answer.  So I know what to do to fix or at least stabilize the problem.  Instead I get a lot of running around the bush and unhelpful handouts.  And the run of the mill advice like, keep doing therapy.  To me that is the equivalent of patting a small child on the head and sending them off with a lolly pop in hopes that they have pacified the child and made them forget the problem at large.  So it makes me kind of mad that the same old tired things keep getting trotted out.

But the other part of me knows that they really don't know.  Cary Lynn lived.  She defied medical odds at 24 weeks.  She defied medical odds when she first came to live with us.  Every day she lives she defies another odd.  Everything that she does that they told me she would never do.  From the day she grabbed a toy to the day she took simple steps with support she continues to remind me that I dwell with a miracle.  The doctors are by and large clueless about my child and so many other children like her.

So while I'm not overly thrilled that I have to endure another umbrella diagnosis and I'm not going to give up hope that someday we may have better answers than darts and scotch can provide I'm going to take it one day at a time and watch my little odd buster continue to blaze new trails and set the world on fire.

Saturday, June 20, 2015

Happy Father's Day

Once upon a time a girl met a great guy.  They went on a couple of dates.  On about the third date the girl asked the question.   It was an important question, meant to weed out people.  "Hey, I really want to adopt children when I get married.  I was adopted and I'm not too sure I am able to have kids so this is super important to me.  How do you feel about this?"

Talk about a loaded gun.  The girl had asked the question before to other guys.  They beat a trail real quick so she learned to ask it early on before she got too attached.  This guy was different.  Without missing a beat he looked at the girl and said, "I don't have a problem with that at all."  The girl had to make sure her hearing was working.  But it was and she really started to like that guy.  Enough to get married and settle down.

Flash forward a few years.  Her friends and family were popping out kids like rabbits and sure enough she was unable to have kids.  She timidly approached her husband again.  She saw beautiful children in China that needed families.  Her friends had adopted from China.  He quietly said to her, "What about the kids here?  Don't they need families too?"  Those words sealed their destiny.

It wasn't easy.  They went through and were approved to adopt in Florida.  Then they relocated back to Virginia.  And found out that you had to start the process ALL over again.  There were many days that they were both frustrated.  But they kept going.  And on one cold Virginia winter they became parents for the first time to a bright eyed, tow haired little boy.
He was daddy's little man right from the start.  Sure mama was great and all but it was daddy who this little boy tottered after.  He followed him around mimicking all that he did and wanted to be just like him.

Flash forward a few years later.  The couple was told that there was a little girl.  She had a lot of challenges and that no one wanted her.  It would take a very special family to raise her.  The girl was nervous about meeting her.  Not the guy.  He reached right in, scooped her up and said, "That's daddy's little girl."
She was chubby, pink, and nestled right in.  She calls him Dah.  Once again mama takes a back seat. Luckily, she has pretty decent self esteem and a good sense of humor.

The girl has watched this amazing relationship grow between the guy and their children.  She has learned that it doesn't take much to have kids but it takes a lot to raise another guys kids.  Especially when those kids have lots of disabilities.  It takes patience, a sense of humor, and a lot of love.

Like flowers the children are growing and thriving.  The little boy is an active 8 year old who still follows daddy everywhere.
 The little girl still thinks Dah is superman and expects to be treated like royalty at all times by him.
This girl is incredibly happy.  I found an amazing husband, father, and friend.  It hasn't always been an easy journey, but it has been an amazing one.  Happy Father's Day Shannon.

Friday, May 8, 2015

A Letter to My Son

Dear Marvin,

Where did the time fly to?  When you came to our home you gave me a new name.  Mama.  I was so excited to have you come be a part of our family.  After years of wanting a wee one and watching friends and family have children I was finally able to have a little one of my own.
You were so little and you were just what our family needed.  You brought laughter, smiles, and mess.   You made our house a home.

Every day we watched you grow and we loved you more and more.  Even though you had a tough start you never let things stop you or slow you down.

Then the day came when you started asking for a "baby scissor",  Dada and I were talking about another child and we weren't sure what we wanted.  When the social worker asked you you didn't hesitate.  You announced you NEEDED a "baby scissor".  And then you looked at her with those baby blue eyes and she told you that you will get one.

When Cary Lynn came home you were so excited.  You put on the roll of big brother like I put on my crocks.  It was a comfortable easy fit for you.  You became Cary Lynn's champion, number one fan, and the way you love and protect her makes me so proud of you.

You changed, just like we all did when she came home.  You knew instinctively that she requires more time and attention.  You have unselfishly given of your time and pitched in when needed. Sometimes I feel terrible that I can't give you my 100% but you never complain.  You just hug me harder.

Every day you grow and change.  We are so proud of you.  This weekend you will turn 8.  I can't wait to see where this year's journey will take us.

I love you more than words can say.  You are my everything and my all.  I am proud of you.

Your Mama