Christmas 2013 Wrap Up

Christmas started a little early in our house.  I'm not talking about 3am.  I'm talking about months early.  Think Halloween.  Yup.

Our church puts on a Christmas play and the play director approached us when we were out grabbing Kit-Kats about the play.  She asked if Marvin was going to be in it.  When he hesitated, I quipped, "Sure if you can find a spot for Cary Lynn."  I then did what every good mommy does.  I forgot all about it.  Yup, that's how I roll:).  If it isn't written down or burned into my brain with lasers you might as well forget it.

Well, apparently the play director didn't.  When she presented her group with the challenge of including a non-mobile, non-verbal kid they didn't blink.  When Marvin came home with his part after practice I was informed of how my daughter was going to be an angel in the play.  What???  At that point my daughter was eating and spitting her food all over me so angel was not what I was thinking of, but I'm pretty sure they didn't want the alternative in the nativity.

So with some Christmas lights, a wagon, and lots of batting and tape a little ingenuity this is what happens:

It was awesome.  For people whose kids do this stuff all the time they may fail to understand how important it is.  But it is.  It is so important.  I really didn't think Cary Lynn would be in this Christmas play.  Or any play in the future.  But she took to the role like a duck to water. I loved how they lifted her up on stage and she made spitting noises.  It was magical for me.  I recorded it.  Unfortunately, I got a little over excited and think I missed Marvin speaking his line (shhh... we say nothing.).  But I did catch him doing his whoop whoop sign at then end of the play and really if you are going to embarrass them later on down the line that is the stuff you need to have on hand anyway.

We also had Christmas.  Marvin started Christmas eve by spiking a bit of a fever.  So we missed one of the many family gatherings that Shannon has.  And he has many gatherings.  I love them all, but if I had to recall every name I would be in trouble.  Thankfully, most of them know my name.

On Christmas Day Santa came!!!  This is where we tend to have some trouble.  Cary Lynn can't open gifts and really looses interest after about 10 seconds.  Marvin gets totally overwhelmed and goes into sensory overload.  I wish I had the kids that got up and ran to their stockings and ripped into presents like crazy.  Instead I get the kids that melt down and throw an hour long screaming tantrum.

But this year I got a little smarter.  I put gifts in gift bags, kept the numbers down, and the stockings were pretty pitiful by "normal" standards.  But we made it through Christmas morning with no melt downs.

"Santa" left educational and useful gifts, like books.  Marvin was pretty happy.  Then we pushed the envelope and went to church.  Again, we did OK.  A couple of rough moments, but Marvin was so enamored by kneeling in the pews and going up to holy communion, that it kept him diverted.

Then we went to Shannon's parents.  They did an awesome job. Unfortunately, I blew it.  Marvin got a scooter.  That's all he saw, all he wanted, and the rest could have disappeared and he would have been good.  But I got into traditional Christmas mode.  I kept trying to drag him back in and show him stuff.  Sigh.  You would think after all the classes, books, and articles I have read that I would have learned by now.

Yes, Marvin blew up.  For about an hour he raged.  And I was left feeling frustrated, upset, and downright embarrassed.  But after he was done and he was nothing more than a giant puddle on the bed and I was left feeling like the worst parent in the world for just pushing him I decided that if he can't change just yet I need to change.  I don't want to bubble wrap him from the world.  But I do need to change how I respond so maybe Christmas can be a better thing for both of us.  To let him lead me with his cues.  To prep him beforehand.  And maybe try to make things simpler for him.  To do less instead of trying to cram 8 million things into one day.

So we get up and try again.  I may never have my Norman Rockwell Christmas, but hey, I really don't know anyone who does.  I can't force my kids into molds that don't fit them.  I can however accept and love them the way they are.  They are my children, but also my teachers.  They show me that even though things can be hard at times and melt downs happen that the storm blows over and we pick ourselves up and try again.

Taking a New Look at Things

Boy, I think I should just call it a day after thinking about a title.  Or just post a date like lots of my fellow bloggers do, but I do love a good title.  I have a feeling though that you really don't want me babbling on about that:).

So this past week we made a pilgrimage to Pittsburgh.  When you have children with multiple special needs sometimes no matter how much you wish, you can't meet all of their needs in one location.  Cary Lynn has many needs, but I often find myself struggling to get her the care she needs where she lives.  Especially, her CVI.

Since we brought her home I heard so many things about CVI and one thing would often contradict the other thing.  I found myself confused, aggravated, and just at a profound loss as to what needed to happen.  Tracking or no tracking?  Color or black and white?  Light or dark?  The list went on and on and on.

I also found a lack of opthamologists that understood any of it.  They wanted to wait and see. Something my daughter couldn't afford to do.

Then I wondered why I was going to all this trouble.  Why not go to the person who did all the original work.  Dr. Roman.  So I called a few months back and got the very last appointment of the year.  It was my Christmas miracle.

The days flew by and we got ready to roll.  We went a few days early and we saw some of Pittsburgh.  I think our favorite spot was the aviary.  As a side note, I am allergic to feathers, but my children love birds.  So what's a mom to do.  Basically I sucked it up, took some allergy meds and fed the Lorikeets with my little one.

Cary Lynn loved them.  One landed on my arm and nibbled on her ear and she just laughed.  It was nice to do normal things.  Plus the staff was very accommodating.  I sneezed like crazy all night but it was worth it to make her happy like that.

The next day we went to West Penn Hospital and our first visit with the View Program.  Dr. Roman came out to greet us herself.  A side note on this.  I have read all her books, articles, and watched her.  She is like the Cher of the CVI world.  I was so worried I would make an absolute fool of myself and say something dumb.  But she put me right at ease.

For the next 2 and 1/2 hours (yes she took that much time for us!) she went over everything and I got lots of answers.  And practical ways to incorporate vision into everyday life.  Plus I have her phone number and e-mail address so I can contact her.  She also is willing to talk to Cary's doctors and therapists.  Wow.  So here is mostly what we came away with.

-There are three phases of CVI.  One is the most basic and three is the most high functioning. Cary Lynn is a phase one with her foot in the door of a phase two.  That means she is moving from being a passive gazer into a more proactive vision realm where she can learn to interact with her world making eyes and hands work together.

-Cary Lynn would rather everyone else do the work for her and she can just sit on her tookas.  I was already aware of that and Dr. Roman picked that up in about 15 minutes of meeting her.  She needs to be firmly pushed in the right direction.  But that tends to be the way she is with all things that involve work:).  So I was given tips on how to push her.

-What does she see?  OK here it goes.  Follow me on this.  Imagine you are in an airplane.  You are 3,000 feet in the air and we are talking about the Mayans.  You have a window seat and glance out of the plane all the while discussing Mayans.  How much do you see?  You know things are there, but it is hard to see what they are at 3,000 feet in the air.  Plus you are distracted by Mayan culture and my amazing amounts of knowledge on it.  That is what Cary Lynn sees.  She is in an airplane and distracted by sounds and activity around her.  That is what most CVI kids see.  They DO see, but it is hard for them to place the pieces of it all together.

So how do we make Cary see things better.  Well we are back in the airplane again.  I have fallen asleep and while we were talking the Chipmunk apocalypse that the Mayans had foretold has happened. (You should have payed attention when I was telling you about this). We are flying over Vegas at 3,000 feet and all there is left is Caesar's Palace.  There are three giant spotlights highlighting it.  I bet you can figure out what it is.

So it is a pretty simple solution.  Isolate and highlight what we want Cary Lynn to see.  We have been doing that already, but with Dr. Roman's guidance and helpful tips I feel like I can do it better.

-Also we need to push to make vision a priority at ALL of her therapies.  Making she she is in the best positions and placements are a must.  The more we use her eyes the better she learns to interpret the world around her.

-She also needs glasses.  It won't fix CVI, but she is nearsighted and that will help her.

The trip was amazing.  Meeting Dr. Roman was the best.  But learning that my child CAN and DOES see was priceless.  Looking ahead I have all sorts of hopes and dreams for my daughter. And a feeling of great optimism that we can accomplish so much.  It will be an uphill battle most of the time.  My little girl is not easily persuaded that work is fun.  She has her own opinions about that.  But with all the people fighting for us and supporting us we will make it. One step at a time.

Taking a Stand

I don't know how many people do Facebook, but all through November there was a kind of game.  People posted what they were thankful for.  I was a little (OK a lot) obnoxious and would post silly stuff like how I was thankful that my family knew how to hang the TP.  I did post some serious stuff because I am grateful.  Always.  Well most of the time:).  Lets be real here.  But something happened.  November ended.

With that the some of the people who wrote the longest posts of gratitude were mysteriously replaced by pod people.  Nothing made them happy and everything made them miserable.  It was almost like a contest to see who could be the most unhappy and dissatisfied with their lives.  I thought they may have needed to blow some steam, but it is like Debbie Downer came to town.  I felt the uncontrollable urge to tell them to get off the cross because someone else needed the wood.

A couple of months ago I noticed things were really bumpy here.  Hubby and I were fighting more, Marvin was having all sorts of problems at school and at home.  Cary Lynn was not her normal happy self.  She was crabby and irritable.  Things were not going well.  At all.  It turns out it was my fault.  Well some of it.

We had had a really hard time.  My husband was in a bad car accident.  Cary Lynn had more health problems.  Marvin was just loosing it.  One of pets was purposefully killed. I was not getting the Norman Rockwell life I signed up for.  Things were headed downhill with no breaks.  So all I could do was be unhappy.  I could put on a good face, but I was just miserable. And it showed.  In everything I did.

A few weeks ago my daughter was in the hospital.  Again.  I was really drowning.  Then they came.  The family next door.  The nurses who were so cheerful with me and Cary never smiled.  One came in my room from next door wiping tears from her eyes.  I went to the lounge to my drink from the fridge.  The child's grandpa sat in there with his shoulders shaking.  The pain was living and almost unbearable.  It was all I could do to walk out of that room.  I put the tissue box next to him and met his eyes.  I said nothing and left.  Counselors, doctors, and nurses surrounded that family.  The little one lay still and grey.  I knew then that that little one wasn't coming home.

I sat in my room.  And thought.  And thought.  There is something in the world.  It comes to claim your joy.  It comes to rob you of peace, happiness, and joy.  It is evil.  It exists and wants to take you.  I looked in the mirror and didn't like who I saw.  I was being destroyed by this evil.  Bit by bit.  And worse yet, I was taking my family with me.

I would love to say this is when heaven opened up and the angles sang.  That I went home and everything was magically better.  The children are saints, I have my halo and crowns of glory, and my husband is now perfect.  Ahem.  Not quite.  But I have learned a few things.

Attitude makes a HUGE impact.  I am not saying that you should never be sad or angry.  Nor will I come beat you over the head with a rainbow of joy.  Life isn't easy at times.  It's not for the faint of heart.  Its stinking hard work.  But when I sit and mope and whine about it all the time what message am I sending?  What am I showing my children?  I want to raise strong resilient children.  Ones who life may knock down but who will have the strength to get up and stand again.  They watch me.  All the time.  Heavens, I'm lucky if I can go to the bathroom around here by myself.  So when life pushes at me I push right back.

So what if you can't push back?  What if it is too hard?  I hear you.  But if you can't stand alone find someone to stand with you.  Alone we are weak and vulnerable.  Together we are strong.  Don't let evil overcome the good in you.  Don't bottle it up either.  Find someone, anyone.  If you don't like people talk to your pet.  The best conversations I have had are with my rabbits.  They don't judge.  They eat your furniture, but they are great listeners.  You don't like pets, find a rock, tree, anything.  Anne Frank wrote in a diary she name Kitty.  There is always something.  Mourn, rage, but then release.  Realize that people stand with you, support you, and care.

I can't change the world around me.  I can't stop the bad things.  But I CAN and WILL control how I respond.  I will reclaim a peaceful home.  I WILL teach my children strength. I will also teach them that sometimes I fall on my face, but I get back up again.  This is a legacy that I will leave them.  Resilience, strength, and most of all hope.  I won't always be successful, but I'm not perfect.  But I will take a stand against evil.  I won't let myself be robbed.  It's not fun to feel that way and it drags everyone down and color the world grey and hopeless.  I will stand with the help of friends, family, and my rabbits:).  I am not trying to be Pollyanna.  But I do want to have peace of heart and mind.  I am taking my stand.

DI, eating, and all that jazz

Sorry, not catchy title today:).  My energy was spent doing a much needed blog tweak. Check out the new digs around here:).  Updated pics and all.  It was much needed and something I kept putting off.  But our adoption ceremony pictures came back and I decided it was time for some updating.  The kids are getting older but I am staying 25.  That's my story and I'm sticking to it.

So this week we have brought back operation beef up baby and gotten some more answers and questions about Diabetes Insipidus.  It started out with a joyful visit to endocrine.  I enjoy our Dr.  But it seems like they can't make up their mind on whether Cary has DI or not.  If you are interested in reading more about what DI is and need to impress friends, co-workers, or your mom read this: en.wikipedia.org/wiki/Diabetes_insipidus.  If you want the abbreviated version this is it.  The pituitary gland does not communicate well with the kidneys.  When a normal person pees we pee out all the bad stuff and hold onto fluids.  DI people pee the fluids and hold onto the bad stuff.

So after finding out that Cary Lynn's sodium levels were dangerously high I was upset.  I kept being told that she was fine and life was grand.  I voiced concerns but they were not heard. Well, lets just say this time I WAS heard loud and crystal clear.  I also got answers.  Cary Lynn has partial DI.  When she is healthy and happy her little body manages.  When she gets sick her little body goes into a tailspin.  So the logical thing is to keep her well and hydrated. For now.  That is not the reality.  And the doctors don't know if it is in her kidneys or centrally located.  It seems like our wonderful hospital lost a lot of her blood.  And put her on IVs with lots of extra sodium in them which jacked up her sodium count.  So the only way we will get answers is a trip to the ER when she gets sick again so they can run tons of blood work.  But for now I would like to stay home so I am pumping her full of liquids.

Which leads me to eating.  Cary Lynn is not a good eater.  She just isn't.  I think back on all the years where I worked with kids and all the advice I gave them to get their kids to eat.  Boy was I so sort of stupid know it all.  Now I am the one being lectured by very well meaning people and it is a bitter pill to swallow.  I wonder how all these parents dealt with me and if they were thinking, "Man, that woman should just shut up!".  I smile, listen. and think, "One day you will be on this side of the fence and it will not be fun."  But I digress.

Cary is stubborn.  She doesn't always feel hungry.  She has vision impairments so imagine being blindfolded and fed.  Add sensory issues to this party and you have a really fun time at the table.  So the first task was getting her to drink something other than pediasure.  She needed clear liquid.  So water was not fun for her.  Neither was apple juice.  While I was fixing her meds I had an epiphany of sorts.  All her meds are strawberry flavored.  So is kool-aid.  So I went to the store, bought out the strawberry packets, brought it home, made it, and stuck it in her med syringe.  Viola!!  Cary Lynn loved it!  So I got bold and introduced some cherry juice. Once again success!  Now don't get all riled up.  I know you can't feed your kids kool-aid and cherry juice.  I have gotten her to take some water.  It's a process.  I am just thankful she is drinking period.

With her hydration coming along nicely we have turned our attention back to food.  Feeding therapy has decided that she is just rotten and I have to be a drill sergeant at meal times.  The spoon will stay poised on my child's lips until she opens.  It seems harsh but it works.  Most times.  She has now developed a habit of spitting hard and the food ends up on me and not in her mouth.  Gotta love it.  But she is starting to eat.  Slowly.  She nibbles and I coax for just one more bite.  She is taking in an ounce to two ounces per feed.  She eats five times a day.  It seems like so little but when you add in eight ounces of water based liquids and twenty four ounces of pediasure that is a lot of food.  The goal is to get her to gain some good weight so she gets stronger.  Well her body needs to get stronger.  She has an iron will already.

It is hard work and a lot of days I am just toast.  But Cary Lynn is worth it.  She continues to surprise me and everyone else.  She brings me so much joy (and laundry with all the food spitting).  Like the little engine that could she chugs slowly up the mountain of life with a great big smile and knowledge that she is able to do it.  A little bit at a time.