My Family

My Family

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

Friday, May 1, 2015

Finding Her Voice

Imagine you are going out to a restaurant.  You have been working all day and are looking forward to that giant 12 oz steak, baked potato, and monster salad.  You're starving.  You dress up and go out. Then you get to the restaurant and the waiter asks you what you want.  You open your mouth and no sound comes out.  You try again but this time all that comes out is weird sounds.  "Rgumpha".  To you it sounds like steak.  But everyone looks at you funny.

Your companions step in to save the day.  "She wants fish, rice, and soup."  WHAT?!?!?  You clearly wanted steak.  You don't even like fish.  You try again and get louder.  You companions laugh and say "Isn't that cute?  She's really hungry."  By this time you are really ticked off.  You don't LIKE fish.  You start picking up silverware and throwing it, you tip over all the waters at the table and begin to scream and cry.  At this point you are told to be quiet by your companions and they shove bread in your mouth in hopes to appease you.  You have been broken.  Your wants have been ignored.  A part of you is raging and the other part is hurt and confused.

Were you listened to?  Were you validated?  Were you acknowledged as a human with rights?  No you weren't.  Would you like to live this way?  I wouldn't.  I'm glad I can go to a restaurant and order my steak with pride.

But it is estimated that 1 in 100 children have communication issues.  For some it is finding the right words.  For some children, like my daughter, they are classified as totally nonverbal.

When we adopted my son at 18 months he came to us with a rich sign language vocabulary (his foster father was profoundly deaf).  He only had five words.  Within the next year his vocabulary exceeded the average toddler.  We surrounded him with conversation, books, music, and Kipper the Dog (so not my choice but he loved it).  He blossomed.

When Cary Lynn came to live with us I made the assumption that yes, she would be a late talker but surely she would blossom as well.  We did the same things.  But we had such different results. Where Marvin talked within months Cary Lynn was struggling even to make simple sounds.  She understood sooo much but the words just didn't come.  So I tried harder and pushed more.  She was such a smart kid.

But the brain bleed that triggered all my daughter's health issues also robbed her of something very precious.  Her words.  But somehow we still made little inches.  I learned to recognize what her sounds meant.  When she moved a certain way.  She and I could generally work together and get her needs met.

There came a day though that we spent over an hour of tears, tantrums, and the biggest meltdown over what toy she wanted.  Try as she did I couldn't understand what my kid needed.  And it killed me.

We were in Early Intervention and they pushed sign language and words.  I started pushing back. Then we were introduced to our first communication device.  The big mack.

Cue the angels.  I loved it.  We programmed I want that in there and Cary Lynn took off.  She was now able to tell me, well she wanted something.  It was pretty good.  And it worked for about a year.
But several months ago she put the brakes on.  Cary Lynn refused to use the switch.  She would throw it, grumble when it came up, and just balk.  So I started to wonder if it wasn't enough.  After all, only being able to say one thing over and over is rather limiting.  So her therapists suggested two switches.  I was like seriously?  Don't you have anything else?

So I started asking questions.  Doing research.  I am lucky.  I have friends who love alternative communication.  One amazing human presented me with a PODD book

Now by using the big mack (programmed to say that's the one!) we had partner assisted scanning.  It was so neat to see what Cary Lynn could say.  I loved the book.  I still love the book.  It is fun and I was able to spark some new interest in the switch.

So then I got excited.  What else could we do?  I then looked at the IPad.  At this point we only used it for learning games.  What if I added some language.  My rock star communication and tech peeps came through again.  We started with Go Talk Now.
So here is our basic choice page.  Let me couch this by saying I'm not a techie person.  I joked that I married tall and techie.  I did.  My husband not only can reach that top pantry shelf he has patiently guided me through the urban computer landscape.  To do this simple page took me about an hour. Yes, I know.  Ask me about how to complete the mixed media layout on a scrap page, how to make the best chocolate chip pumpkin muffin, or how to bring Celtic elements into your bedroom and I will talk for hours and use lots of great terms.  Give me an IPad and I glaze over and loose all shreds of human kindness and humanity.  In fact if it were not for my awesome blogger friend who guided me through the process you would not even have this blog.

But for my daughter I would slog through anything.  Including technology.  We also invested in PODD for the IPad.

 By using the IPad my daughter now has access to lots of words.  She has a voice.  One she now enjoys using.

It's not perfect.  She still has CP and somedays the movements aren't there even with lots of trying. So I teamed up with UVA (our hospital) and worked with a speech therapist and the Tobii/Dynavox people.  Cary Lynn was able to trial devices.  We found that she really liked a nice communication device.  She was able to demonstrate competence and had a lot to say.

With speech comes freedom.  Freedom to tell her mama to go jump in a lake, refuse to work, and demand endless episodes of Peppa Pig (once again not my choice).  In other words to be three.

Yesterday she melted down.  We had about two weeks of killer back to back appointments.  Next week is also going to be busy.  By pulling out PODD she was able to say that she was sad and tired. A year ago that wouldn't have happened.  I would have just pushed her on.  Today I pulled the plug. No appointments, she is still in pjs and is happily rolling on the floor trying to grab at her balls as they roll around and is squealing with joy.

As I said, this is not perfect.  Because I'm not perfect.  Somedays we never crack a device.  Her CP gets in the way or she isn't interested in trying.  We get busy with other therapies.  Little does she know we are going to be walking in a bit.

But bit by bit our new way of talking is falling into place.  Now a days the experts push for communication devices at 18 months for children who they target with speech delays.  I worried about putting one in her hands because I was afraid it would stop her from "really talking".  But if anything I now hear more noises.  More sound.  More garbled language, but language none the less.

My daughter has found a powerful tool.  She has found her voice.  Someday she will be able to order steak, watch what she wants on tv, and be able to connect with the world around her.  And most important of all be treated like someone who has value and worth.  I have no idea where we will be in another couple of years but I look forward to my daughter being able to tell you all about it.  In her own words with her own voice.

Wednesday, April 29, 2015

It's not in how you fall it's in how you rise

This week has been tough for many of my mama friends.  I just got off the phone with one.  She's so far away from me but always in my heart.  I think often about these women.  They have been such a huge influence in my life.  They have taught me that it's not in how you fall it's in how you rise.

Having one child with special needs is a challenge.  But when we willingly chose to take on number two there were many who questioned my sanity.  Heck, I questioned it at times (alright a lot).  But looking at the face of our soon to be daughter I knew we had made the right choice.

That didn't mean it was easy.  For years I was "that person".  You know the one who knew how to get your kid to nap, eat right, do complex algebra while folding the laundry.  Ahem.

Cary Lynn threw all that right out the window within one week.  After my ego had been properly bruised I realized it was OK not to have all the answers.  I even figured out it was OK not to know all the questions.  Instead I learned.  I still learn.  I read, research, and dig.  Then I dig more.  I listen better and stop assuming that I know everything.  I admit that I am human and am going to mess up. And I have become OK with that.

I was also the person who would never do that.  You know.  The one you talk to in passing about your child's g-tube and they get this weird look like they would rather be transported to Mars and disintegrated on the spot.  "I can't imagine how you can do that?!?  I NEVER would."

Well guess what buttercup?  I wasn't going to either.  But I have.  And I do.  One day it just clicked that this is not the most awful thing that could ever happen and I would not turn into troll by doing it. I know change g-tubes, bolus feed, give enemas like a pro, can tell you super good tricks on how to clean out vomit quickly and still show up to church looking good, and can clean up a dreaded bed feed in about three minutes when necessary.  If it was your child you would learn.  Love is a powerful motivator.

We fall.  We are human.  We will keep falling.  But the important part is that we don't just lay down and die.  We rise.  We stand back up.  Sometimes it's hard to do because we have been trampled and bruised by life.  It hurts.  It takes courage to get back up again.  Lots of it.  Sometimes you need a hand and that's OK.  But the important thing is that you keep on standing.  You are stronger than what life throws at you.  So don't be afraid to rise and try again.  And again.  Because when you rise you show that you are stronger than your circumstances and that you will be the victor over them and not the victim of them.  And while you may never figure out how to do that complex algebra (sorry I stopped advising on that a long time ago) you will find something even better. You will find that you are not only ready to meet hard knocks but able to say with pride that yes you may fall but you also are going to rise again.

Wednesday, April 8, 2015

Fortune's Wheel

Once in awhile I dream this fantastic dream.  It's spring and I'm in the park with my kids.  We are on a grassy hill.  There is sunshine, trees, and butterflies.  I am sitting on a bench talking to an unknown person.  In my dream I know them.  As we talk I watch both kids play.  The part of the dream that takes my breath away is that there are no AFOs. No wheelchairs.  Cary Lynn runs strong and free. There has been no abuse.  Both of my children are healed, happy and whole.

Sometimes when I talk to this stranger I complain about how hard things are.  Then the person asks me, "Do you want your children well."  I grow silent and don't answer.

Then I wake up.  I wake up to doctors, therapies, wheelchairs, ptsd, and those horrible Afos.

The question is simple, but at the same time a loaded gun.  You would think that any sane parent would say "YES!!  I want them well!" But for me it just isn't a black and white question.  It's so many shades of grey.

First of all, I do wish they hadn't been abused, neglected, and suffered.  I get weary of fighting the world around me for services, going to doctors, and instead of medicines, sensory diets, standers, and medical paperwork that has taken over my craft area. I want my days to revolve around stories, cuddles, giggles, Barbies, and trucks.  I want to call my friends up and instead of discussing Cary Lynn's latest medicines and Marvin's latest therapy talk about what I watched on TV, or what I saw the neighbor doing (probably not, we live in the country and have so many trees that if the neighbors were doing something good, I'd never catch it).

But here is the tricky part.  If you spend your whole life yearning for what you don't have you miss what you do have.

If my children were "well" they would never be mine.  They entered into the system because they weren't cared for.  I would have no Marvin or Cary Lynn.  They would belong to another and that alone chokes me up because this house would be so empty and lonely without them.

If my children were "well" I wouldn't have gotten to know the strong community of women who stand by me.  These women are amazing and their kids are amazing too.  Our children have brought out the best in us.

In my life and travels I have talked with many adults with disabilities.  They inspire me.  Sometimes I get brave and ask the question.  About being "normal and well".  Guess what their answer is nine times out of ten?

No.  Yup you heard me.  So then I ask why?  And they look at me like I've grown two heads.  I get responses and this is a compilation of what is said.

"Yes, some days we do want to do what everyone else does.  It would make life easier.  But they learned that they had so much to offer.  That they could push boundaries, fight for equality, and most of all teach us that just because you are disabled doesn't mean that you you don't have things to offer or that the gifts you have are inferior.  That diversity is the spice of life.  And that we all matter. "

Plus, what dawned on me is if I also spend time wishing my kids well I send a silent message that what they are now isn't good enough.  While I firmly believe that we can work harder to be better people, I don't want my kids to feel like they don't measure up.  Because they do.

I say it often and I mean it.  My kids are amazing.  And they have so much to offer the world.  And they matter to the people around them.  And to me.  So even though I'll probably never call with good gossip about the neighbors I will enjoy the two precious lives that I have and celebrate who they are as is.

Tuesday, March 17, 2015

Hollow Victories

"You are young still, Sister Myrddyn, but one day you will learn that a false victory is a hollow one.” 
― Melissa de la CruzThe Ring and the Crown

I will admit it.  I am competitive.  I love to win.  I also hate loosing or giving up.  Ever.  

I'm a terrible looser.  Especially when it comes to children.  When they loose out on things that they should have it grates my nerves.  I want to overcompensate at times because they missed out on so much.  I feel that they earned these things from the abuse and pain they lived through.  

That is why we had a big meeting yesterday.  Why I sat down with about 12 people from different areas of our children's hospital therapy center.  

Let me back up a bit.  I got out of Early Intervention in our state as soon as possible.  It was a flawed program.  The vision therapist I cherry picked and fought for was the ONLY decent part of EI.  My child wasn't making progress.  So I had heard rumors of a magical place where kids got lots of services.  So I went there.  I went through the evaluations and my daughter was in.  I was super excited.  Here was this great place with lots of bells and whistles and my kid was going to have the best!!  

I was handed paper work and explained the 80% attendance policy.  I patiently filled them in on my daughter's health and said that we may not make it 80%  I was worried, but I was told that it was not a big deal and this was not written in stone.  I could have make ups.  So I signed.  And we started attending.  

Cary Lynn loved it.  I saw improvements.  But I still had one medically fragile kid.  Our attendance slipped and skidded with hospital stays and illness.  When I would ask for makeups I was told that there were none.  Ever.  I fretted.  The therapists hinted that maybe these times weren't her best.  But I held on doggedly.  I tried to keep stuff from getting in the way on Mondays.  But you can't tell your kid NOT to get sick or go to the hospital.  

Then about two weeks ago I got a phone call.  It was the speech therapist.  She insisted we had not held up to 80% and I was being evicted from the program.  I was stunned.  And then I was mad.  I knew that other parents weren't showing up 80% and still had services! I insisted that we were being bullied, I wanted documentation, and I did not agree.  We left it at Cary Lynn being dropped to every other week.  I hung up and I was so stunned.  I cried angry tears.  

Then I started emailing.  I told my team that if we were going to evict people than we needed to up my child's game.  No more rolling, sitting.  I wanted her up in gait trainers, on the treadmill.  I wanted her to move beyond one switch for communication and explore devices that would give her a voice.  I wanted eye gaze technology.  I felt like we were doing as little as possible lately and that my daughter needed more.  Then I called the pediatric advocate and sobbed out everything.  

I was loosing.  Loosing services and a slot and I couldn't have that.  Soon I was hearing from higher ups and we had a meeting.  I spent over an hour with two of them.  I plead my child's care and case. We agreed to have a bigger meeting.  In the meantime I fretted, stewed, cried, and just out and out lost it.  It was stressful.  And it wasn't fair.  Or right.  I wanted to just leave at some points.  But my daughter, patient and cheerful, used her device to let me know she wanted to stay.  So honoring her choice and her voice became my priority.  

So when we came back yesterday I sat patiently while her PT made an effort to get little stiff legs to stand.  And they did.  Briefly.  

I proudly showed her speech person the communication device we are working on in the IPAD.  She immediately said she did not like the brand.  She then said it was "too much" for my child.  And that "children like your daughter" don't really understand that much and "probably never will".  That speech there even though they "presumed confidence" know that most children can't.  

I had no words.  I was so crushed.  I wanted to cry but reminded myself that we had a meeting.  It could be addressed there.  

Next was OT.  Cary Lynn rocked out eye gaze.  She also played some awesome games.  It was the best I had ever seen!!!  I felt soo much better.  

Then my husband came and we started the meeting.  The hospital advocate came too.  The meeting was broken down into two parts.  The first part was insisting that the 80% was right and fair for all. That did not sit well with me.  I also brought to their attention lack of make ups.  I couldn't make them understand me and I didn't understand them.  The second part consisted of therapists reports. Of Cary's achievements.  The goals I had asked for were being debated.  I fought harder.  I was going to win this one!  I did get some of my goals in place.  But only for 6 weeks.  If she does not "move forward" then it is not the time.  After all they didn't want to "therapy her to death".  Her OT wouldn't even LOOK at me or contribute about how well she was doing.  

In the end it was agreed that we would continue weekly services.  For 8 weeks.  To see if we could make our 80%.  They also admitted (to our advocate not the family) that they handled this wrong. We also have some new goals and things to try.  I also get a case manager that I meet next week to help me handle and coordinate things.  

So was it a win?  To most yes.  We have our services in place.  The hospital also knows that I'm not so easily pushed around and may think twice about how they handle us.  They also are willing to try some new things with Cary Lynn.  She gets a chance to try to walk.  So in that regard, yes it was a win.  

But in so many ways the win is hollow.  And it is overshadowed by so much painful loss.  The loss of faith in my child's team that they really have our families interests at heart.  The loss of respect for people who think my daughter has the IQ of a carrot and is not worth their time or effort.  The loss of trust that they will make the best therapeutic choices for my child.  That they will challenge her to try and believe that she can.  

For me victory has never been more bitter.  It leaves a rancid taste in my mouth and pain in my heart. The most painful part is that I will have to take my child away from a place that she loves and ASKED to be in to find another one that will support our family.  How do you explain to a three year old that the people she loves do not see her as one with value?  One who is worth so much more than they can see.  

Time will heal the wounds of hollow victory.  We are stronger than this and I know that there is so much more out there for my child.  I hold on to the hope that hollow victory can be replaced by true victory in a place that supports my daughter and values her as a person who is capable and able to do so much more than the limitations that people set upon her.