My Family

My Family

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.

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.

Love,
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.  

Monday, February 16, 2015

The Disney Top Ten

The week we had been waiting for so long has come and gone.  And it was probably the most amazing week of my life!  We were granted an amazing opportunity to go to Disney World and stay at Give Kids the World Village.  Thanks to an organization that you have heard me mention quite a bit Baking Memories For Kids.  If you haven't been following me you can learn more about them here.  They are sending families with children with life threatening conditions to Disney one cookie at a time:).  Check them out and support them!

While we were there Give Kids the World Village made sure that we were well cared for.  I'm the first to say that I'm not the easiest person to feed since being on the fodmap diet.  But they managed to cater to Marvin and my food restrictions and that was just the tip of the iceberg.  This village rocks!!  To learn more about the village and the families they support click here.

I could spend most of this post going in 2,000 different directions.  But I don't think you want to read war and peace ala blog style.  So I really thought about what I wanted to say. I managed to compress this into a top ten list of things I learned, re-learned, and truths that hit home during this trip. It's still a bit of a read, so sit back, grab your favorite beverage and let's start!

10.  Sometimes it's best to sit back and enjoy where the journey takes you just as much as the destination. 

This one is hard for me at times.  We were originally scheduled to fly but due to my daughter not being able to sit by herself the airline told us they couldn't transport us.  After being grumpy for about 10 minutes we decided to drive it.  It was the best possible decision.  First of all on the way down I got to meet one of my all time favorite writers, Amy Clipston
 It was an honor to meet her and spend time with her!  Plus I got books!!  Yay!!!  On the way home we stopped at South of the Border.  It is between the North and South Carolina border.



It had tons of buildings with stuff to do including hats around the world.

Yes, my son is under there.  We also spent time at the largest indoor reptile exhibit (according to them) in the US.
Sorry, it was humid in there but there were some really up close reptiles.  These are things we would have missed flying.

9.  While people can be wasting time on trivial life events they can miss important things. 

You want to know what was the main topic on my news feed this past week?  Yoga pants.  Yup. People going on and on about wearing them, their husbands forbidding them, and the big debate on them.  It was ridiculous.  But when we let these things consume our time and energy we miss important things.  Case in point as I was standing in line waiting to ride on cars  with my son there was a giant group of children.  I had the honor of meeting a little girl who was battling cancer.  Her name was Molly and she has leukemia.  This is her third time fighting that horrible disease.  But she was all smiles as she got ready to board that car.  The man at the gate offered her encouragement telling her she would kick cancer's butt.  All the children there were amazing and I was blown away. There are so many things out there that really are news and we just miss them because we are so focused on trivial.

8.  Even though there are some really rotten people out there the world is still full of caring wonderful people.  

It wasn't all roses on the trip.  When we were at Animal Kingdom my daughter decided to have a blowout.  My husband went to change her and while he was in the family bathroom this woman decided she didn't want to wait her turn.  She banged on the door, yelled and then called in a Disney employee to kick my husband out.  It wasn't fun.  But the Disney guy was awesome and told her to wait.  We also had an employee at Lego Land ignore us while we waited for a ride in the handicapped spot.  For 15 minutes.

But those were the only two times we had trouble.   The rest of the week was amazing!  The people bent over backwards for our family.  My daughter only had to smile and people showered her with stuff.  Disney employees bent over backwards for us.  We had a special pass that was like a golden ticket.  The characters spent extra time with my children and played with them.  I would have to say I got puddly on many occasions.  The woman in the checkout hugged me and told me I was a good mama.  So despite what we see in the world there are still so many good people left.  It gives me hope.

7.  Being treated like others matters.  

For one week in a village in Florida my kid was treated like every other kid.  No stares, no weird questions about what was wrong with my child.  She was simply Cary Lynn, the child addicted to the carousel ride.  It was day three before it dawned on me that no one asked for diagnosis, doctors, or any of that.  And it was GREAT!  We were just a regular family for that snapshot moment in time.  It made me realize that we have a long way to go back at home.  It will take a lot of work to educate others but it's a job I'm up for.  My child is not defined by her disability.

6.  It's important to let others help you and just BREATHE.  

I'm a person who wants to do everything.  But doing everything by yourself is exhausting.  I don't like help either, but it really is needed.  For one week I didn't carry my tray of food or do much cooking.  The house ran like a well oiled machine and people constantly asked what they could do to help us.  I relaxed and when I let others help, I felt better.  I was able to just love on my babies and let others worry about dishes.  Life gets crazy, but taking advantage of help recharges you.  I feel great after my week and ready to take on what life throws at me!

5.  Special needs parents are rock stars!  

I know this.  I'm surrounded by 200+ women who amaze and inspire me daily.  One of them was on the trip with me.  Our families went together and this woman just amazes everyone who meets her. Amanda Jones has a little one names Allie.  She is also an amazing little girl.  You can follow her journey on Facebook here.

Amanda has had her fair share of challenges thrown her way and is able to rise above them all. While we were on vacation her husband had to be rushed to the hospital (he's doing better now).  He insisted that she not waste a minute of this trip and give his babies their vacation.  I probably would have freaked out and melted.  But Amanda rocked it out.  She took all three of her kids and gave them magical moments that they won't forget.

Amanda and Allie are two amazing people and I am blessed to have them both in my life.

4.  When people come together with a common cause real magic happens.  

A lot of people made this trip happen.  It went so smoothly it was almost like magic.  But the real magic is in the big hearts these people have.  They didn't sit and say "wouldn't it be nice to do something".  They proactively came together and MADE things happen.  From the cookies that were lovingly made with my child in mind to the gifts that magically appeared every day at the village.  I don't think there are enough words to express our families depth of gratitude for every nice thing that was done for us.  Thank you seems so very inadequate.  But everyone of you blessed us this past week in a very special way.  I cried a lot (happy tears so all good!).  The caring touched our hearts and made us feel very cherished.

3.  I can handle what life throws at me. 

I will be the first to admit that I can be a bit of an *ahem* spazz.  But sometimes I get it right.  When we were heading down on the start of our vacation we stopped so I could give Cary Lynn her meds and juice through her g-tube.  I opened up her shirt and realized with a sickening thud that the g-tube was gone.  Just gone.  Also there wasn't much of a hole left.  It was closing.  So we had to act fast.  I promptly had a fit.  Then I got the spare tube out and both Shannon and I went to cram it in.  Not happening.  So after freaking out a bit more we drove to the grocery store so Shannon could run in and grab some lubricant. As I looked at the hole I realized that I needed to buck up and get it done. So I manually stretched the stoma (g-tube hole opening) and managed to cram that puppy in.

Cary Lynn was all smiles and trying to roll through this whole ordeal.  Marvin was a wreck and I thought I was going to puke.  But after I realized what I had done I felt really proud of myself.  I've come along way and I realize that I've gotten much stronger.  I'm pretty proud and whooped it up a bit in the parking lot.

2.  My husband is awesome.  

From coming out of Animal Kingdom covered in poop, running in to get lubricant for the g-tube, and not caring one iota about yoga pants he is simply the best.  Watching the way he interacted with the kids this week and the way he loves his family makes him a keeper in my book.

1. My kids are amazing.  

My kids are my world.  I know they are amazing and I want them to have special moments and memories.  Marvin spent time advocating for himself this week when things were too noisy or when he had enough.  He also spent lots of extra time loving on Cary Lynn.  He is turning into a thoughtful caring young man every day and I'm proud to be his mama.

Cary Lynn is my princess, diva, and fighter.  She never lets life knock her down and has a smile for just about everyone.  She inspires me to try harder and fight for her daily.

Once again to everyone who made this trip happen, thank you.  You have no idea how much this meant to our family.  Or how much of a difference you made.  Or how one little girl is now firmly convinced that she is royalty;).  Getting back to regular might take a bit to get used to:).  But for the smile on her face and for all the magic moments that we were blessed with will be memories that we will treasure forever.

Friday, February 6, 2015

Happy Tube-iversary!

Today I'm packing for the trip of a lifetime!  We are getting ready to go on the trip of a lifetime.  Sun, Disney, sun, Seaworld, sun, Legoland, sun.  Did I mention sun??

But a year ago this wasn't such a happy time.  A year ago we were preparing for a trip of a different kind.  When I left the hospital in December for the 8 millionth time that year my daughter came home with an ng tube, was 19 pounds, small, weak, and sick.  And I was defeated.  I had finally (sensibly according to the doctors) given in to a g-tube.  I was applauded for making my daughter's life and world a better place, but all I felt like was a big failure.  I had failed my child.  All the years of being a teacher and nanny I prided myself on getting even the toughest kid to eat.  I was able to coax food down any child.  But my own daughter baffled and confounded me.

So I packed for the hospital dutifully in February.  I cried for days.  Even though my special needs mom's group was cheering me on I knew that I was taking this journey alone. I felt isolated, numb, and my stomach hurt non stop.  I kissed my little girl's smooth tummy and packed her up.

When we got to the hospital her room was ready, toys were laid out on the bed.  We were checked in and cheerful nurses set us up.  I started to cry and the head nurse told me that it would be OK and hugged me hard.  I felt a little better.

That  didn't last long.  The surgeon came in a little later and once again we had a fight about a nissen. A nissen is often given with a g-tube surgery.  But we didn't need one.  Cary Lynn has rumination syndrome and a nissen is about the worst thing you can do for that.  I tried patiently explaining that to them once again and pointing out I was rather stressed so I really didn't want to argue.  The doctor gave up and told me that I would be sorry about it later when she had to have surgery again.  At that point I assured him she wouldn't have surgery AT ALL if he didn't back off.

Then his nurse came in.  My daughter's procedure was supposed to happen that morning.  They kept taking her off the schedule and putting in more "urgent" children.  My daughter could not eat or drink and by now was screaming from hunger and boredom.  The nurse insisted she was my new BFF and could hook me up with anything.  She then showed me in two minutes everything.  I begged her to come back after the surgery because my child was screaming, I was stressed, and she didn't even have the tube in yet so I had no idea!!  She said she would.

Finally at 5pm we went in.  The whole thing took 20 minutes once she was prepped.
Everyone oohed and ahhed at the beautiful work that was done.  All I wanted to do was throw up and cry, in that order.  They cut my perfect child open, stuck a piece of plastic attached with nothing but a balloon and expected me to be thrilled.  Well pardon me for not jumping on the party wagon.  

It went from bad to worse.  The next day they go to send us home and I say, no.  No one has shown us how to use the tube or care for it!  The floor nurses say its my BFF's job.  Guess what?  She decided that it wasn't so there was a huge fight over who was supposed to do it.  My husband got involved and finally I got another 2 minute lesson on it and a promise of a visiting nurse.  Thank God for You Tube and my attendant.  I didn't have a clue.  

So we went home.  I would love to say it got better but it really didn't.  But we adapted.  Thanks to the visiting nurse and my attendant and a friend I called who taught me about venting I learned. \ Slowly and reluctantly.  The BFF nurse was a little mad that I wans't willing to change the tube, didn't want to see the hole, and touched the area as little as possible.  The more they got preachy the more I dug my heels in.  I think I cried more over this than anything that Cary Lynn had gone through.  

Slowly things got better.  I started cautiously looking at the area, touching it.  I realized my child was not going to blow up when I came near her tube.  She also was able to eat better.  Because she could eat more she grew.  My little 2 foot 19 pound bean is now 3 feet 1 inch and 26 pounds.  I also realized that our life didn't revolve around eating.  She ate every three hours and it took about 30 minutes.  That's all we did.  Now she still takes some food orally but we now eat 3 meals and two snacks and it takes 15 minutes tops.  That's more time to enjoy life.  I don't feel chained to the kitchen.  I bolus her nice nutritional meals since now her variety is expanded and she tubes everything from broccoli to hot dogs(Ok so the hot dogs don't count but she loves them!  I swear I feed her extra veggies with it!)!   

I also fired my bff nurse and crew.  I replaced them with a more sensible team.  The last straw was when I found out they gave her the wrong size and type of tube.  We had a huge Mickey.  We now have a smaller Mini.  Her stomach has stopped pouring acid onto her skin and her granulation tissue is all gone. I have to travel to Norfolk to see them, but it's worth it!  

I also found the humor in it.  We named her IV pole Stanley, decorated him, and he has starred in my Facebook page.  When my daughter does crunches and manged to hose the cat straight out of the tube feed I couldn't stop laughing.  Even when I was cleaning it off of the ceiling.  Moments that remind me that it does get better and that we can get back up when we are knocked down.

The best part was is that we have not had an extended hospital stay since the tube.  When she is sick, I keep her at home cause I know I can get fluids and food in.  I am soooo happy to stay away from our local hospitals.  

I've also gotten braver.  A week or so ago I installed my first tube.  Something I vowed I'd never do. I really wanted to get her new smaller tube in so I bravely did it.  I also looked at her hole.  It wasn't awful, it was just a hole.  I popped the new tube in, filled the balloon with water and realized that the world did not come to an end:).  I also realized that I can do this.  This was the last barrier for me.  

Now would I do it again?  Surprisingly, yes.  My daughter needed this surgery.  Now mind you I may have had it done someplace else, but I would have done it.  She has been better off with the tube.  I don't always love it, but I'm happy my child can be healthy and well with it.  Let's just say I'm at peace with it.  

And frankly, it's better to be at peace.  Because it's not going away.  People "graduate" tubes all the time.  For Cary Lynn and most children like her even though it's not impossible, it's highly unlikely that it will go away.  But I'm OK with that as well.  She needs to be healthy and strong.  This gives her the ability to do it.  

The journeys we make aren't always easy, but they shape us.  We can either become weaker or stronger.  My daughter is a fighter.  She chooses strength.  So do I.  

Tuesday, February 3, 2015

Sanctuary

Everyone needs a place they can go to.  To reflect, be calm, pray, and just think on life.  A sanctuary.

For a mom with two special needs kids I crave a magical few moments where I'm not changing more poop, vomit, dishing out medication, calling doctors, and running a million child related errands,  A place where I can just breathe and release.

My sanctuary is a place I look forward to going to every week.  I don't always make it there.  We've had a lot of sickness and trauma upset these last few months so the time I go is very precious to me. We try to get there though every Sunday.

When we get there we take the kids to their classes.  Marvin bounds in and tries to sneak up on his teacher (with lots of noise).  He loves going.  Cary Lynn is wheeled like the queen of Sheeba into her room and is greeted with smiles, touches, and genuine gladness that she is there.  I'm so glad my children have found a space that they love.

We go up, I smile and say hi, get my bulletin and sit down.  And just breathe.  I open it up, but truthfully half of the time I'm not even reading it.  I just am taking that brief and precious few minutes that rarely come my way.  Moments of quiet, reflection on the week, and thoughts of my busy life. Moments of pride and shame.  A resolve to do better or happiness with how things turned out.  I need this time and these moments.

That's just part of what I need.  I also need a diverse community.  My sanctuary has that.  I look around.  I see diversity.  People dressed in beautiful saris sit next to people in suits and jeans.  People that come from different places all together for a singular purpose.

My sanctuary also has people of different abilities.  We have a thriving special needs ministry.  The adult special needs community is in our service.  They are part of it.  They perform in the choir, and take the offering.  They are accepted and loved.  In moments when their actions don't match what should happen no one points, stares rudely, or makes dumb comments.  They are a vital part of what we are about.

We also have children.  They are welcomed.  You don't see people shushing them.  When a little girl a few moths ago recited a prayer in her super loud and confident voice and got part of it wrong no one said, "Geeze, can't you keep your kid quiet or teach her to pray right!" The mother got tons of compliments and an elderly woman got a little misty about it.  (I think the mom was a bit embarrassed but the kid thought she was a rock star:) ).  My sanctuary understand that children are the future and that they should be cherished and encouraged.

This is my place.  It's a very special one to me.  I find rest and my soul is lightened.  My hope is that you are able to find your own sanctuary as well.  We all need a place to go.