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.

Seasons of Joy, Seasons of Sorrow

We come to one of my favorite times of year.  The snow (yes I love it), the lights, the carols, the tree, decorations, cookies, secret surprises that I have to hide from a very sharp little boy.  It is also almost "gotcha" day for Marvin Fields.  He came to us December 12. Here is a look back at my little butter bean:).

Awww.  When we got Marvin I thought I had won the lottery.  We went to meet him at his foster family's house.  He was pudgy, wobbly, and had the brightest smile.  I was in love from the get go.

His foster family had first choice to adopt him, but they had already adopted two children and wanted him to go to a family that could not have children.  It was supposed to be a slow and gradual process, but a day later we were told that Marvin needed to be placed with us in the next couple of weeks.

So we scrambled to get everything ready.  How we pulled it off I have no clue, but we did.  I had Christmas up and rolling and had visions of mother son bonding under the tree with stories and cookies.

Marvin left for preschool that morning unaware that his world was about to shatter.  His social worker picked him up at noon with all of his belongings in her car.  He cried himself to sleep and when he woke up he was with his new family.  I was beside myself with joy.  Marvin, not so much.

When he woke up and realized that his things were in a new room big tears rolled down his fat cheeks.  His foster father was deaf so all he did was walk around the house signing for his daddy.  He wouldn't come near us.  He cried like his heart was being broken.  And it was.  All that joyful bonding went down the toilet.  Marvin was scared, homesick, and heart sick.  My child had already survived massive amounts of abuse and we basically took away the only family he ever knew and expected him to be joyful about it.

Marvin began the healing process.  My son is a survivor.  But while I love the holidays, Marvin remains shaky about them.  For the outside world he puts on a happy face and tries to participate with all that he can muster.  That after all, is the socially acceptable thing to do.

But there are times when the pain and fear resurface.  Marvin has a harder time going to school.  He was taken away from the only family he knew, whose to stop someone else from taking him?  Sometimes, I can't even leave the room without him melting down.  So I hold my child tight and assure him the best I can.  I take him with me.  He holds my hand with an iron grasp afraid to let go.  Someday he will believe he is safe.  Until that time I just hold him tight.

He looks at our tree and cries.  He doesn't understand why he is so sad.  He tells me,"Mommy, my heart hurts."  He has nightmares, meltdowns, and he gets angry.  As I sit and rock him my heart breaks over and over again.

So how do you teach a little one to find joy?  To feel the magic of the holidays?  Nice and slow.  I coax him to cook with me.  I read him stories of our faith.  I teach him our family traditions.  But most of all I let him know that it is OK to feel sad and angry and scared.  That he is surrounded by love and people who will protect him.  That someday he may want to do more, but for now it's OK just to watch, to take in, to process it all.

Slowly, Marvin has been a bit better every year.  This year he asked to put up the tree, a first. We take it slow and explain things.  Marvin is not good with change, but he is less resistant to it every year.  I may never get the Christmases I dreamed of.  Marvin has a lot he still needs to process and work through.  It may take a lifetime.  But I am learning that it is OK to let go of the fantasy and build Christmas our own way.  To take is slow and rejoice in what I have and not mourn for what can't happen.

The best gift I can give my son can't be bought and put under a tree or in a stocking.  It is the gift of letting him be himself and loving him just the way he is.  That is what makes the holidays, and our lives magical.

To Stand Alone

For me I am kind of a follower.  I don't like making waves.  Most times.  I like to hold hands and sing and think that everyone should just nap and eat cookies.  Then the world would be a happier place.  Really.

So when you stand up for something in a world that tells you to go right when you know left is really the proper route it is hard.  That is the world that I dwell in daily.  It is a world I have chosen, but still at times I wish it would go away.

This last week I have lived at the hospital.  Cary Lynn went in on Saturday afternoon after getting really sick from her MRI.  While they were running tests they found her sodium levels were abnormal.  For her a healthy range is 131-145.  Hers were almost in the 160s.  Yikes.

So that is when things started going down hill for us.  Their first inclination was to put Cary on a high sodium drip.  Which brought her levels up more.  Sigh.  It was kind of one misstep right after another.  From nurses having a huge fight in the hallway, to improper care of Cary's pick line, to putting her on the wrong IV fluids.  It wore me out.  It seems like I spent more time babysitting and micromanaging than I ever had to before.  It was frustrating and irritating.

What was decided by endocrine was that due to Cary having to "fast" before the MRI is a bad idea.  Her sodium levels can't handle it.  She needs to be admitted and have an IV before any procedure.  Preferably a low sodium one.

So that was good.  It was also amazing that once she was off of the IV that her levels were totally normalized in an hour.  Surprise surprise.

But the big thing that kept rearing its head up was the g-tube.  It felt like I was being bullied and pushed.  It was even insinuated that I would not be allowed to leave unless I agreed to look into the procedure.

Don't get wrong, we have been talking about it.  And I did want more information.  So I talked to the doctor.  But he was confused.  He saw Cary, saw her eat, asked questions and then asked more questions.  He was a little confused as to why we wanted a tube.  When I explained that we were gathering information and told him about her he thought that we were being sensible. Which I strive to be on occasion.

But here are the problems.  Cary is medically fragile.  A simple MRI landed us in the hospital for a week.  Any surgery or procedure is even more risky with her.  Plus she is able to eat and drink orally and tests have been run proving she doesn't have any problems.  And our GI doctor is a problem as well.  When I told the Dr. about insisting on putting her on a different medication and that the GI didn't like that one of the nurses in the room told me that he just "gets even" with his patients.  This does not instill great faith in me.

I have good instincts.  I have always had them.  I sense things that people don't always pick up on.  One of my friends always jokingly says that my "bat senses" are top notch.  It is easy to be around all these very intelligent people and think that they are a fount of knowledge and know more than you will ever hope to know in your lifetime.

But sometimes you have to step back.  You have to follow that instinct.  You stand alone. And they look at you like you are the nut as you say no, not now.  I think there is a problem, but we are missing it.  Plus there are 3 tests they are supposed to run that no one has.  So after getting a new GI doctor we will run the tests.  I will have my answers.  If she needs the tube she will get one.  But my "bat senses" are in overdrive and not once I have I regretted listening to them.

Cary eats, she drinks, and now that we are out of the hospital she is sleeping again:).  It is hard to stand alone, but that is the only way we can change things is to make a stand.  To declare that the system isn't always right and they don't always have your best interest at heart.  So I will stand.  I will follow my instinct and my inner voice to do what is right for my children. Always and forever.

When there are no answers

Some days it is just crazy.  When you have a child that is really complex sometimes you just have to strap on your hat and get ready for a wild ride.

It has been one of those weeks.  What should have been a routine MRI just snowballed.  But it started snowballing much earlier than that I am guessing.

Cary Lynn had been sick with one thing after another.  Stomach bugs, whooping cough (yes I do vaccinate her, but surprise!  you can still get it!  Grrr, that is a whole other post), and a partridge in a pear tree.  So in between all this her body was starting to break down and get weaker.  And while that was happening a silent killer was creeping in.

So we went for the MRI and a day later we were in the hospital with sever coughing and vomiting.  It seems that we picked up a really bad virus that was sent over the top with the MRI and low oxygen she was on during the MRI and our good old friend Diabetes Insipidus is back.

For those of you who read this you will know that endocrine has changed their minds about whether she has had this or not about 5 million times.  The fact is she DOES have it.  Even when they told me they were so sure she does not, surprise she does.  Insert eye roll here.  DI does not affect blood sugar.  It affects sodium levels in your body.  Cary is supposed to be in the 140s.  When we came to the hospital she was 164 and rising.  This can throw your body out and cause enough issues to basically shut you down.  Her little kidneys were just on overdrive.

So we are hooked up to IVs and oxygen to support a fragile and complex system.  It all starts with the brain.

Or rather a complex micro-preemie brain.  On the left you can see what a normal brain looks like for a little one.  On the right you can see what my daughter's brain looks like to an extent.  The ventricles are enlarged and fluid seeps in.  It destroys the good parts and replaces it with fluid.  Cary's brain continues to baffle experts and causes people to wonder.  Her cerebellum is smaller than average, even though her shunt is working her vents are still large, and there are waves and jumps that we don't get.                                                                

She should follow patterns, but she doesn't.  I get told that her lungs are off, her kidneys are too small, and her brain is so abnormal.  Then I ask why and how.  I get silence.  Deafening silence.  Coughs, eyes shifted away.  I scream for answers that no one has.  

The simple fact of the matter and the whole heart of it is that technology and medicine have advanced.  Cary Lynn wouldn't have survived 100, 50, 20 and maybe even up to 10 years ago.  We advance and as we do children live.  That is great for Cary and us, but children like Cary are still complex.  Still fragile.  But she lives.  She thrives.  Despite being in the hospital for the umpteenth time she is happily blowing raspberries and digging in her diaper with a happy grin.  

So we will never know.  I won't have answers, at least not in this life, but I do have one feisty daughter.  She is fragile and I may not have as long of a time with her as I would like, but I will treasure each moment.  We aren't promised tomorrow.  Or today.  We have to live in the moments that we are in.  My children are gifts to me.  On loan.  In the end they don't belong to me but to a force and power much greater than I.  I will love hard on them while I have them and treasure the moments.  Every last one of them.  

Adoption Matters

I have been talking a lot about adoption recently.  It is National Adoption Month and once a year I have a chance to speak about not only my children's adoption and the process but my own personal adoption journey.

I get lots of questions ranging from "How are your personal experiences and perceptions shaped by adoption?" to "Do you think you were left by aliens from a planet outside of earth?"  (Of course I was asked that by an 8 year old boy when I was a kid).   The questions are humorous at times, but mostly thoughtful. They make me reflect on thought and feelings.
Adoption matters.  It is not a perfect process, but it creates something wonderful.  It throws together people that would probably never cross paths in everyday life and draws them together to form a new unit.

I look on my life as an amazing journey.  Because of one persons selfless act they started a chain of events that changed other's lives as well.  I always viewed my adoption as matter of fact.  My biological family couldn't raise me and wanted a good home that could.  That happened.

But what also came out of it was my desire to adopt as well.  I wanted to continue the chain. And I did.

In 2008 we brought home our son.  He was born addicted to meth and had Shaken Baby Syndrome.  He also suffers from PTSD, RAD, and learning disabilities. But he is also an amazing testament to the power of love.

We had thought we were done.  But then Marvin looked at us with those big blue eyes and asked for a "sissor"

So in 2012 Cary Lynn came to live with us.  She was considered a legal risk adoption because her parental rights hadn't been terminated, but we took a chance.  Born very premature and with a list of problems twelve miles long and 8 million specialists Cary continued to defy odds and showed us that strength does not come in size, but in the beat of a tiny heart.

I would like to say that it was easy, magical, and that I dance with unicorns in fields of violets daily.  It wasn't.  We had to take parenting classes.  Three times.  I had to deal with incompetent social workers, dead ends, and dashed hopes and dreams.

But I built new dreams.  And when doors started to close I just stuck my foot and face right in them.  I took leaps of faith and jumped through flaming hoops.  I shouted, cried, whispered and prayed.  It took three years to get Marvin and two years for Cary Lynn.  But it was worth it.

Adoption is not for the weak.  If you can't stand waiting, having your life gone over with a fine tooth comb, and multiple random people in your life get a hamster.

But if you are one of the amazing people who stay the course you have a chance.  A chance to provide a child roots to grow and wings to fly.  A chance to break abusive and harmful cycles. To set them free from bad patterns and start new patterns.  The chain you start has a chance to impact many other lives.

This month we celebrate adoption, but in my home it is celebrated every day.  In the laughter, tears, and hopes and dreams.  The chain that started almost 39 years ago is going strong and changing the world.  Adoption matters.

The awakening

  " The child passes little by little from the unconscious to the conscious, treading always in the paths of joy and love" -Maria Montessori

I love the stories and folk tales from different cultures.  Many speak of a time when people were asleep and enchanted and mythical creatures roamed.  When the time came we awakened.  We had always existed and would continue to exist, but our bodies and minds lay dormant.

When we brought our daughter home I felt like she dwelled in this dream time place.  She was happy and content to be in the embryonic state and to let us live life around her.  She would sit for hours if you would let her in a patch of sunshine watching the world go by.  Content to be a bystander. Content to be dormant.

Many special needs parents have children that dwell in the dream lands.  We do anything we can to coax, guide, and flat out drag them kicking and screaming into humanity.  We feel that they are missing so much, the joys and try to force them into something they are not ready for.  I tried to force my daughter out so many times that she began to flee to the dream land.  She fled from everything I tried to do and hid further and further in the shadows.

So I stopped and stepped back.  It was hard for me to do.  I am not by nature a patient person.  But I wanted Cary Lynn to come out on her own terms.  And she did.

I can't tell you exactly when it started happening.  Was it when she realized she could push a switch and get her needs met?  Was it when she understood that by moving her left hand at a certain angle that she could hit shiny red bells?

Was it when she sat in her chair and signed music and I sang to her and then she signed more?  Or was it when her vision teacher brought over all sorts of new playthings that Cary has now spent several hours of untiring exploration?

I don't know when it exactly happened or how, I just know that it has.  My daughter is awake.  She is interacting with her world.  Movements that were jerky or reflexy are becoming purposeful.  She is exploring, thinking, and laughing.

We are starting a new path and beginning a new journey.  I have no idea where we will go, but I am excited and ready for the adventure.   My daughter has left the dream land.  And life will never be the same.

Tricks and treats

We have had so much happening around here and I feel really swamped most days.

We had an awesome Halloween.  The kids were dressed up and super super cute.

Marvin was a knight.  He loved the costume.  The minute he came home from school he put it on and pretty much wore it until we pried him out of at bedtime.

Last year Cary Lynn was a ticked off flower.  This year she was a ticked off Raggedy Ann.  She hated the wig and tried to chew her way out of her costume.  She finally got into the "spirit" of things when we were out.  We have an awesome neighbor who buys out the dollar general every year.  They loaded Cary Lynn with enough squishy balls and bubbles to last her until next year.  She also had her fist taste of pureed Kit Kats.  She didn't like them.  In fact, my kids are really not into candy.  Marvin will eat it for a day and then be done.  So most of the candy is *ahem* eaten by other sources.

Cary Lynn had a slew of appointments.  We started at the pace clinic.  She has been cleared for the MRI on the 15th.  I am nervous.  This is a real chance to look inside her brain.  There has always been talk of the damage.  But this will make the talk real.  But I am really trying not to dwell on that right now.  I have bigger concerns.

The number one is weight.  Or lack of it.  Cary Lynn is dropping pounds and no one knows why.  We go to the GI doctor on Thursday.  So hopefully we get answers.  She wants to eat, but her little body is at war with her mind.  It puts the butterflies of worry in my heart.

She also got her chair.  What's the big deal?  For me it is a mixed blessing.  Cary Lynn is at the age where she can no longer fit in cute baby equipment, but she is not ready to sit on her own.  Just like the costume her little body is well, raggedy.   She wants to do so much but her body won't obey.

So the chair came.  They come with names like the Buffalo or a Stingray, but it is all the same.  It is a piece of equipment that most two year olds don't need.  I saw the chair today at PT and really wanted to just cry.  But then Cary sat in it.  And smiled.

And kept smiling.  It was like she was saying, where have you been oh great and mighty chair.  She has laughed and played in it on and off all day.  So I really can't have a gloomy Gus attitude when my own kid acts like this is the best thing since sliced bread.

Cary shows me a lot of things.  She is the greatest teacher I have had outside of my son.  They teach me that the things that bother me really shouldn't.  That sometimes we all need a little support.  And a positive attitude.  My greatest wish is that I can go through the waters of life with the same joy and acceptance of situations that my children have.

Hidden Scars

Many times I am stopped with funny looks in stores.  I have a daughter with leg braces, and as anyone can see multiple special needs.  I am pretty calm and just smile, answer questions, and ignore funny looks.  I don't claim sainthood, but a few years back I may have been the one staring at "that kind of child".  So I practice patience, forgiveness, and most importantly education.  I do not believe in "hiding" her disability.  It is part of her, it makes her unique, and defines the way we see the world around us.

But then you look at my son.

Chances are if you walk into my house you will see a whirling dervish.  A six year old high octane full energy kid whose greatest life achievement at this point is that he has learned to make armpit farts.  The simple joys of childhood.

That is what most people see.  The all American blonde hair, blue eyed kid.  The kid everyone likes. He's funny, loves animals, and hates cleaning his room.  Its what you don't see.  I call it the hidden scars.

My son lived through more abuse and trauma in the first year of life than you could ever imagine.  He was beaten, dropped, neglected, and eventually shaken to the point where he nearly died.  His abuser was a person who was supposed to protect, defend, and love him.  His bio mom.

I made some big mistakes when we first got him.  The biggest one was the lie I bought.  He will be fine.   He will just magically be normal.  But for Marvin that normal never came.

Marvin flourishes with us.  He is like a little plant soaking up sunshine and love.  But Marvin's mind stopped growing when the abuse started.  He has memory loss, numbers and letter look funny to him, and learning new things is a challenge.  He also can have tantrums that last for hours, anxiety attacks, and stress episodes.

Chances are you won't ever see them.  Marvin is a master chameleon.  He has learned how to survive and put on a happy face.  But the scars are there.

Marvin needs support and help to make it day to day.  He has traumatic brain injuries.  He needs constant reassurances that he is safe and supported.  Thankfully we are getting support.  We get support from a trauma specialist.  We basically had to learn to re parent Marvin.  We are in the process of getting him support in school so he can succeed.

Marvin is amazing.  He was a victim of horrible violence and a survivor.  He continues to live day to day and has a zest for life.  We continue to fight for him and advocate for his unique needs.  I also am no longer hiding it.  When we hide abuse and violence we have let the abuser win.  We need to shine light on the deeds done in the dark so we can help victims advocate for themselves.  There is no shame in this.  There is only shame when we choose silence and let the innocent continue to suffer.

I choose to be silent no longer.  For my son's sake I will not pretend anymore.  I am breaking the silence.

Cary Lynn is two!!!!

Wow!  The little girl that came into my home has had some major changes.  The biggest one is that our adoption is finalized!!!  Yay!!!!  There was a court photographer and lots of hooplah, but I don't have the pictures yet so I will backtrack to that when I get them.  Let's just say I cried.  A lot.

Then we celebrated.

Every girl deserves a party hat:).  Cary Lynn turned two.  For most children two is another day at the ballpark.  For Cary Lynn it is a big mile stone.  She lives.  It's true that she is still mostly non-verbal, doesn't walk or even crawl yet, but she survived.  That is pretty big in my book.

We kept it pretty simple.  Just grandparents.  We ate, talked, laughed, and ate some more.

My rocking mother in law made a fantastic cake.

With a little help Cary Lynn was able to enjoy cake too:).

So we celebrated.  She got all sorts of toys and loot.  My favorite is the bubble quilt my mom made for her to play on.

Or sleep on.  Birthday are hard work:).  It blows my mind that she has come so far.  That she is growing and thriving.  We still have a long road to walk and lots of progress to be made, but she has come so far.

Happy birthday little girl.  Mommy loves you.

Adoption Eve

Tomorrow we go to celebrate a big day.  Tomorrow Harmani Lee Armstrong is wiped from all the books and Cary Lynn Fields takes her rightful place as my daughter.  I take her into my home, life, and family for good.  There is no turning back.  Not that I would ever want to.

It has been a journey.  The first time she was placed in my arms it felt like she had always been mine.

Then she threw up all over me and I knew she was a keeper:).  Or I had been territorially marked.

She was small, she was weak, and she had a disability list that would make some people cringe.  Plus she had nearly died several times so not many people were chomping at the bit to take this little lady home.  But I saw something in her.  Something that others may not have seen.

I saw it four days later when we were in the PICU at our hospital.  When I found out that her foster family had missed out on many major medical appointments.  I saw it when a team of doctors came in and talked over her about all her "problems".

It was her spirit and fire.  The child stuck out her tongue and spit at them after they left.  I was tired and scared and here is this baby acting like its just another day at the office.  So I decided that if she could do it so could I (I do refrain from spitting at people even though I am tempted at times).

My daughter is amazing.  Her adoption is the completion of our family unit.  It is a circle of love that started the day I was placed for adoption.  My biological mother had to give me up.  I know the circumstances and the sorrow.  But what she did, like ripples in the pond, started something bigger. A painful event turned into something good.  It placed in me a desire to adopt and that desire took two abused children out of a horrible situation and gave them a stable loving home.  Because of what I did cycles were broken and these children will be able to raise their children healthy and strong.

Welcome home Cary Lynn Fields.  You are strong, beautiful, and talented.  I am honored to be your mommy.

AFO's, Cheetos, and Big Macks

Wow!  It has been quite a week!  And we are only on Wednesday.  Last week I was kind of feeling a little bogged down.  It happens.  Life gets busy and sometimes you just want off the merry go round. Plus Cary Lynn and I were sick with that awful bug that is going around.  But the bug has passed for the most part and we are back to normal and moving through.

The last post I talked about our communication board.  Cary Lynn has been trying it out.  There is an upside and downside to it.  The upside is now she gets to make some basic choices and so far every time I have used it she has made a preferred choice.  I have also found out that I am raising a tomboy because every time I put the ball on the board no matter what the other choice is she always wants to pay ball.  I don't know whether to be thrilled that she has preferred toys or to be upset because I was really hoping for a dolly loving tea party playing little girl.  Sigh.  I guess I will just have to go find someone else to play dollies with:).

The downside is there is only so much Velcro in the universe and objects to put on the board.  Say Cary wants more or is finished with something.  That's a little hard to stick on an object board.  So we have limitations.  That is where the big mack comes in.  And no, I'm not talking about the golden arches.  I'm talking about a switch.  One of these:

We tried sign language with Cary Lynn and she does have a few signs down, but Cerebral Palsy has robbed her of the ability to have really fluent hand movement, plus limited vision makes it harder as well.  So we needed a new solution.  On this switch you can record things.  We recorded "I want more".  So when she wants more of something we have her press the switch.  This gives Cary Lynn a voice and empowers her.  It has been wonderful:).  I have never been happier to be interrupted with I want more.  We'll see how long that lasts:).

In other news we have been making progress putting weight on our legs.  I wish I had a picture of Cary Lynn while she is practicing standing but I am the one supporting her so I don't.  But I have a picture of what helps her out.

I have to admit that when her AFOs first came home I used every excuse not to put them on her.  I thought lets just stick a huge handicapped sign on her with blinking lights.  But lately I have come to realize that it really doesn't matter what others think.  My child NEEDS these.  They support her legs, giving her strength to bear weight.  These are the first of many that she will wear.  So the sooner I suck it up and deal with it the better she will be.  So we wear them.

Cary Lynn is also learning how to chew.  I know not really exciting for those of us who have mastered this years ago, but for her a milestone.  Back when we got her the GI's first sentence to me was, "Ready for that G-Tube?".  I told him where to stick it and that Cary Lynn would eat just like we do thank you very much.  He was doubtful and sometimes so was I, but now she is learning to chew food.  It happens very slowly, but it is happening.  Today at feeding clinic she chewed a Cheetos corn puff thing.  And a cookie.  So she is trying hard.

As we get closer to her second birthday I just can't get over how much she has changed.  From a child that by all accounts from her medical records say she shouldn't have lived she continues to defy and beat odds every day.  My daughter is amazing, stubborn, and wonderful.  I wouldn't have her any other way.

What we've been up to

Wow.  It has been a wild ride these past couple of weeks.  It seems like once Marvin goes back to school things get busier.  You would think with one kid at school and one at home that it would be soaps and bon bons around here.  But that is rarely the case.  First because I don't watch soaps, second because I am never home. 

Cary Lynn and I both caught the urgh these past couple of weeks.  Slightly above the argh.  We started out with sore throats, coughs, fatigue, and congestion.  Both of us are on week two and by all reports it is a three week deal.  So we are just slogging through it. 

Marvin is the only one to avoid it.  Which is good considering the little petri dish probably brought it home to us.  He has had a rough few weeks.  His sweet little kitten got run over on purpose and he has been missing little Tommy.  We all have.  I just can't figure out who gets their jollies over running over small animals.  So we have been giving him lots of extra love and attention.  He is starting to feel a little better and having Tommy's brother, Inky around helps. 

Marvin also went in for several hours of testing.  I spent time filling in the Doctor about my concerns and how I felt for years Marvin has not been getting the support he needs.  I filled out paperwork and the doctor expressed frustration over Marvin never getting preschool screenings.  He told me that he should have been screened years ago.  I was upset because frankly I didn't know my son could get them.  I was told over and over that he was "fine".  So now I feel like we have an amazing amount of groundwork to do.  The tests left me with even greater confusion.  Marvin doesn't recognize certain letters, numbers, and can't stay on task.  He has the fine motor skills of a three year old and the same frustration level.  Yet on some tests he was able to find the smallest details.  Like a missing fillament on a light bulb.  So his teacher got a list of questions to fill out and she sent them in as well.  Now we wait for about a week to get the results compiled.  It looks like we are facing a lot of remedial work, but the good news is that with lots of support Marvin will be able to be successful.  Whew.  That is a heavy burden off of my heart. 

Cary Lynn has also been busy.  We started outbound PT this week.  Early Intevention has been such a crappy experience for us.  I have talked to our support system at VCU and like them or hate them if you will, but they bent over backwards to get Cary the support she needed.  We now have PT, OT, and possibly speech through them.  They are concerned about her lack of progress and feel that she should have more support than EI can provide.  So we will still keep our vision therapist because we love her and I picked her out and fought for her, but we will probably kiss the rest of EI good-bye. 

We also went to Charlottesville to try a new eye doctor out.  That was a horrible experience.  Not only did he dismiss the CVI, he felt like it was pointless to do anything for Cary and basically blew us off.  I was enraged.  We are going back to VCU.  They may not know much about CVI, but are willing to work with us and lean.  Plus I am going up the totem pole.  There are so many unknowns about Cary's phase and her eyes that we are just going to the top dog.  Dr. Roman.  The woman who knows it inside, outside, and backwards.  It can take up to a year to get to see her, but it will be worth it. 

Plus, because I am not busy enough around here we have started working on a communication board.  Cary is hitting that pain in the butt magical age known as the terrible twos.  The things that used to make her happy now just tick her off.  She can't tell me what she wants and sign language is hard for her due to her Cerbral Palsy.  So my awesome vision therapist and speech came up with a plan.  It is very high tech ready for it? 

Ohhh.  All the cool kids have one.  So here is the idea.  Because of CVI most children until in a phase three cannot do pictures or one dimensional objects.  In fact most small children need "real" objects.  They have to understand what an apple is before you move to a picture.  So say it is playtime and I give Cary a choice between her two favorite items a ball or a book.  With a little Velcro magic viola! 

So she looks and chooses.  This does a couple of things.  It empowers her to make a choice, gives her immediate feedback, and saves me from having to listen to her have a fit.  So it is a win win.  Now I only have two objects.  Too many objects and she will not be able to "see" her choices and frankly, toddlers need limited choice anyway.  We are building this board with all sorts of stuff.  It has been fun to see what can be Velcro-ed around here. 

As for me I started a new class.  I am in Partners in Policy Making.  It has been amazing and mind blowing.  I could write a whole post on that and I probably will, but for now let me say that I am learning how to become an even stronger advocate for my children and have met people who are amazing. 

We are constantly going and I can feel fall in the air.  I am hoping to take some time this weekend just to relax and enjoy my family and drink some hot tea.  I want time to slow down just a little so I can breathe and just be.  There is time enough to change the world, but for now I want to snuggle with my two blessings and enjoy being their mommy.

My adoption journey

Adoption is a journey.  It starts with a life that wasn't planned for, wanted, or needed.  This life is passed from one family to the next.  It is a complex situation.  The life is expected to pick up a new identity, culture, and set of values.  For some it was like being born in France and shipped of to Iran.

For others, it is a gentle cycle.  Like it was just meant to be.  It was like nature made a mistake and corrected itself.

My children are adopted.  But so am I.  I was adopted at infancy and given to a couple who could not have children.  My name, Amy means beloved.  And I truly am.

I always felt that I fell into the latter category.  Nature corrected itself and I was placed with the right family. That was the end of the road.

When I learned more about adoption and reuniting with bio-families I was curious, but content where I was.  The only thing that mildly annoyed me was the fact that I had no medical records.  So I just decided that when it was time I would register on reunion boards and see what happens.

Years went by.  I got older and nothing happened.  I sort of put two and two together and figured that it was a bad situation, I was not going to get any answers, and that sometimes it is just a good idea to let things drop.  I erased all my info and just moved on.  I had two children in my home and a busy life.

But then something happened.  They found me.  I was getting ready for my son's play date when I got an e-mail.  It simply stated that this person may be my cousin.  I took one look at it and did what I normally do.  I freaked.  Luckily, Cary's aid was there and basically told me to stop over thinking it and answer the darn e-mail.

I took a breath, said a prayer, and I did.

By choosing this path I opened a new can of worms.  I learned about a pregnant scared teen who didn't know what to do.  I learned that my bio family was in a really bad situation and one baby changed them and gave them the strength to escape it.  I learned that even in the midst of bad things good takes place.

So now what's next?  Well I have a medical history so my doctor can keep a close eye on me for hereditary conditions.  I also have a new side to my family tree.  A cousin, an aunt, and a grandmother. I enjoy hearing from them and getting all the questions I didn't even know I had answered.  I feel like I now know where some of my quirks and the things that make me, well me come from.

But at the heart of it all and at the end of the day I am still Amy.  Still the daughter of two people from Colorado.  Still the big sister to one amazing sister in Colorado who gave me the bestest nephew and niece in the world.  My bio family gave me life, but my family gave me the strength to live it, the courage to try new things, and the joy in day to day life.

Both families have played some part in who I am and who I have become.  I am awed and blessed to be a part of both.  And I wouldn't have it any other way.



 

The way it is

Sometimes, well most of the time,  my life does not go as planned.

Recently is seems like everything has gone wrong.  Everything.

We got a stomach flu and had to cancel an amazing appointment at Kluge.  This was going to get Cary on the fast track to therapy services.  I have now been calling them for a solid week to reschedule and have been unable to get past voice mail.  Grrr.

Marvin is still not able to get in for educational testing.  They told me we would have him in by August.  It is now September and all I have been getting is the run around.  Marvin needs services and he can't get them without a proper diagnosis.  More Grrr.

Shannon had an auto accident.  Our car is toast.  We now have to figure out what to do with that.

I am supposed to be in church right now but Cary decided today was a good day to have a marathon puke fest.  She is on her third bath, I am on my third shower, and my washing machine is plotting my demise as I type this.

So I am really ready to throw my hands up in the air right about now.

But in life things happen.  Some people have been kind of like, God does not give us more than we can handle.  I read a great article on that one and the writer quipped that what the person is really saying is shut up and stop whining.  I did have to smile when I heard that.  

Sometimes life is not running through the meadows with chirping birds and singing daisies.  It is vomit, frustration, a bit of healthy fear, and more vomit.  It isn't easy, its darn hard.

But the moments of grace carry me.  Plus faith that things will turn out for the best. I know that the bad will pass.  It takes time.  And a really good hot water heater.

PTSD Impact

I am the first person to admit when we began our adoption journey that we knew we were not going to get healthy kids.

It was drilled in us from the minute we walked in the door of our agencies until the minute we graduated the programs.

I will also be the first one to say that I knew my kids were broken and that we would continually have to pay for their bio-families sins.  Over and over and over.

But on some level I had really hoped that after a a few years things would settle down and the kids would start to acclimate and with plenty of love, firm boundaries, good doctors, that things would start to stabilize.

But sometimes it isn't that simple.  Sometimes the price and toll that the past brings is high.  And as we have danced so we must pay the piper.

It started last year.  Marvin was a kindergartner.  All through the year Marvin had panic attacks. He hid his school work, ashamed of backwards numbers and letters.  Little things like landing on yellow would have him crying for hours.  His teacher was great.  But I started to notice a pattern.  He had had these same problems in his preschool.  And I was the teacher!

People had assured me that once he was in a different school things would calm down.  And they did, but only for a while.  You see, you can put a band aid on a gaping wound and all you have done is bought time.  The wound is still there.

So things just kept getting worse and Marvin kept going up and down like a yo yo.  He was triggering right left and sideways.  So I started to get pretty worried and scared.  I placed a call to Children's Home Society.  I was kind of grasping at straws at this point.  But since they had always told me that they were there to help I took it.  And I'm glad I did.

Before we knew it we had an appointment with a therapist who specializes in trauma and abuse.  If any kid has ever gone through that it is Marvin.  He is great.  But he will not hold your hand and sing love songs.  He is a tell it like it is guy.  And the picture he painted of what happened was grim.

Marvin came in with us the second meeting and the good doctor had him at the heart of his issues pretty quickly.  He also gave us new labels for Marvin.

The long and short of it is that Marvin, like most severely abused kids needs control in a situation.  He is hyper vigilant and has difficulty feeling safe.  Since Cary Lynn came the little control he thought he had has disappeared.  He loves his sister but feels he must protect her and care for her.  He assumes a parent protector role.  When he should just be a kid.  Marvin was diagnosed with Post Traumatic Stress Disorder, Anxiety Disorder, ADHD due to his brain trauma, and dyslexia.  Wow.  It was quite a lot to take in.

The things that haunt me are Marvin sitting in the office and telling the doctor that we will send him away if he is bad enough.  Talk about ripping out a mother's heart and stomping on it.  And the words"You know she beat the crap out of him.  The last time she was just caught."   I thought I was going to be sick.

So what do you do.  Well I had about two choices.  Die or fight.  Guess what?  I don't die to damn easily.

So what now?  Well we start with fixing Marvin.  In between all of this a trip to the GI doctor told us that he has damaged his IT tract by holding.  It will take a year to fix his poor body and we are on massive doses of laxatives to retrain him to do what he should have been doing.  But really when your life spins out of control the only thing Marvin could control is his toileting so he stopped going.  So this is another area he no longer has control over and he is not happy about it.

We also are going to get a massive amount of educational testing done on him.  We have to bring proof of his learning disorders to get the help he needs in his school.  We are going in for the mac daddy of all tests with a top doctor who understands Shaken Baby and meth kids.  He is like the holy grail of testers.  Marvin also is in therapy to help him work through this.  We also are learning to re-parent him,

The good news is that with help and lots of support Marvin CAN be successful.  He can learn.  He can grow up, get a job, get married and give me lots of grand babies.

The bad news.  It involves fighting for it all.  It involved endless meetings with his school to get him help and support.  We sat down for the first one and it went well, but it is a process.  There will be tons of trial and lots of error.  Plus his poor new teacher looks like she has been hit with a mac truck.  I know she can do this.  I have faith in her and think she is lovely.  But it is a lot that I am pretty sure she didn't sign on for.  Marvin will challenge everything she has ever learned about kids and turn it on it's head.

It's also a process for us.  All the great ideas people have given me have only put a band aid on Marvin's issues.  Now I have to do things differently and people may not always understand why I have to do things that way.  Plus there are those who don't want to hear that there are things wrong with Marvin.  When I need to talk about it I get the feeling they are shutting me out or just thinking, there is that crazy psycho mom going on again.  Can't she just get over it.

But I can't.  I have to live it day to day.  We do our best and sometimes better.  Marvin is a fantastic kid.  There is no one like him.  He is funny, bouncy, and can charm the socks off of you.  He is also the victim of unspeakable abuse and horror.  But he has done something amazing.  He has lived.  He has survived.  And he has walked through hell and come out of it.  Not unscarred, but still he has come out.  So many haven't.  It is up to us to help him learn that he is safe, he can learn.  I have my work cut out for me, but I am ready.  I am ready to stand up for him.  To speak up for his needs.  To tell you that my child has the right to grow, learn, and flourish.

I am ready,  The question is:  Are you ready for me?

Moments of Grace

Sometimes things just don't go as planned. At all.  I hate having bad weeks, because for me it is never just one bad thing, it s lots of bad things.  All at once.  It's hard to stay positive when they happen, but sometimes there is that moment during the day when something positive, funny or downright ridiculous happens that steps in and saves my sanity.  I call these moments of grace.

They happen at times when I would really rather just go home, hide and eat chocolate.

A moment found me after I left a psychiatrist's office.  My son had been having anxiety attacks and we couldn't calm him.  The abuse he suffered before he was adopted is massive.  The Dr. believes that he has PTSD and lots of loops misfiring in his little brain where his bio mom hit him again and again and again.  He has to have massive amounts of testing done and believes that if he is bad enough we will send him away.  Sitting in the office listening to him was like ripping my heart out of my chest and stomping on it.  I was driving home with the kids and we passed a man well endowed with hair everywhere, in a speedo, on a bicycle.  My son could not stop staring and told me that maybe the man was trying to take a shower (it was raining).  O.K.  so I know it's not nice to laugh, but it did make me smile.

A moment found me when I was in the drugstore stocking up for my son's colon cleanse.  When we were at the GI doctor we found out our son has damaged his body from holding it and is very stretched out down below.  It will take about a year to fix it and I will basically be toilet training my 6 year old from scratch.  Starting with a massive colon cleanse.  I had Cary with me picking up all the stuff tarps, pull ups, wipes, Lysol, and all that good stuff.  A woman with blue hair, a baseball cap, and an I love Memphis shirt stops me and looks at my stuff and Cary.  Without missing a beat she says, "My my they can sure make smellies at that age.  I remember my son...."  here she launches into a really great story and the best part is that her grown up son was standing there looking like he wished the earth would swallow him up.  She ends with the fact that he is now a toilet trained productive member of society and not to give up.  I must say that was a big moment of grace.

A moment found me when Cary got her leg braces and we went in search of shoes.  We went to a specialty store after I checked out several with no luck on finding shoes that fit over braces. I was frazzled, frustrated, and tired.  I explained my delima to the sales lady who also happened to be a manager and she and another woman not only help me find shoes, but socks, and a pink leopard print skirt.  I went to pay and that angel simply charged me for the socks.  She looked at my daughter and me and told me that I was an awesome mom and  that my kids were so lucky to have me.  I about cried.  Another moment of grace.  And now I will be shopping there on a regular basis.  I was asked not to tell the name of the store and not to mention it in the store, but I will be a shopper there from now on.

So these were my moments this week.  Things that kept me going and sane.  I know some weeks will be like this and some weeks won't, but when they are I will look and find grace.

Insanity Week

I know that I am a very busy person.  I'm not half as busy as some of the special needs parents that I know, but I do manage to keep a very crazy schedule.  Some people do insanity training.  I do insanity appointments and scheduling.  Today is Sunday but I feel that I have lived a thousand weeks in one.  Here is a peek into my crazy life:

Monday:  I spent three hours on the phone.  I like talking to people, but these were not deep enjoyable conversations.  Cary needs new reflux meds and I spent thirty minutes arguing about getting them with no success.  Then we have to schedule Marvin for  evaluations because his school starts in about 2 1/2 weeks.  I finally got in touch with the right people, plead my case, and had my concerns validated, but it took time and effort.  Then I had to makes some calls because I am trying to surprise my husband with a ten year anniversary gift, but it will take time to put together.  Amber had to leave early to take her child to the doctor and my husband began working pretty much nonstop because his work had a crisis so I was pretty much on my own.  Not terrible, but I was ready for the day to be done.

Tuesday:  I decided we needed a normal day where we could do something fun and not have to worry about therapies and appointments.  I cancelled (gasp) PT and speech and we went to White Oak Lavender Farm.  It was a long trip, but to take Marvin, his friends, and Cary and enjoy the great outdoors was well worth it.  We started the day at 5am and it was past 10pm when all was said and done.

It was long, but well worth it.  I felt like we were all just normal doing normal things.  Plus I now have some pretty lavender around my home.  We want to go back again, but I will wait till the book fair reopens down there.

Wednesday:  Feeding clinic.  The one therapy I kept this week.  It takes me an hour and a half to drive there, listen to everything I do wrong, watch Cary and the therapist fight each other to see who wins this week, and then head home.  Cary clearly hates feeding and would rather live off of fairy dust, but she needs to eat so I go and watch how it is done, and try to use some of the techniques at home.  It is not all bad and I have learned alot, but the godlike attitude drives me bonkers.  I have learned to ignore it and deal.

Thursday:  We drop Marvin off at my wonderful in laws and I head with Cary to Kluge clinic in Charlottesville. We are trying to get Cary off of most of her Early Intervention and in to outbound therapy.  I look at it like this.  The outbound kids are getting steak and potatoes and Cary is getting cat food.  I have seen CP kids much worse off making so much more progress and all report using outbound as Early Intervention did not meet their child's needs.  It is great to be able to do things in your home environment, but if the child is not making progress and you feel that they are perfectly capable, then you need to start asking questions.  So after talking over things with a developmental pediatrician we are going to set Cary up for evals.  It was a two hour meeting, but much was accomplished so I feel pretty good.

Friday:  Cary got fitted for leg braces.  When we went to equipment clinic they were horrified to learn that my PT never said she needed them.  So we had the appointment.  I am so glad we did.  The woman who casted Cary said that in another month or two her feet would have locked in their position.  Then she never would have been able to stand.  She was enraged that I was not told my child needed these until about too late and then commented that she never was a big fan of Early Intervention. Let's just say it is a good thing that I will be getting Marvin to camp next week and not handling PT.  My aid will be in charge of that.  I am so angry at her right now.  She knew and because she doesn't go the extra effort because she wouldn't get paid for it, my child nearly lost the use of her feet and legs!!  I think it is best if I avoid her right now.

Then after that my husband calls.  He wanted to know if I wanted to take a mini vacation.  That night.  We would drive and get away and come back late Saturday.  I was about to say no it was too much and there was no way when my aid pipes up and says "We're heading home right now and I will have them packed and ready."  I asked her if she lost her mind and she told me that I needed this and I would thank her later.

So we came back, packed and were on the road to Lynchburg by 6.

Saturday:  After spending the night in a hotel with the kids and a defective pack and play we went to a farmer's market and craft fair.  Cary smiled and blew bubbles at everyone and I enjoyed home made local chocolate and coffee.  Then we went to Imagination Square.  It is a children's museum.  They graciously made some accommodations for Cary and we spent 4 hours playing, creating, and exploring.  IT has a giant four story slide and a zip line.  Marvin was in heaven.  Cary loved it too.

From blocks to bus, fine art to pirates, this museum had it all.  Marvin and I didn't want to leave but I promised we would go back.  We made a wrong turn some how on the way home and ended up in Appomattox.  So we went to a historical park and saw where Lee surrendered.  It was really cool, but Marvin and Cary were pretty done by then.  We got home late and pretty much went to bed.

Today:  We meet our family to celebrate my mother in law's birthday at the Olive Garden.  I am super excited to go out and give her the presents the kids made for her.  Plus my house looks like it blew up so it needs a little TLC today.

Next week is another busy week, but somehow I adjust and manage.  It is never dull and I probably wouldn't know what to do with myself if it was:).  Soon school will start, I will be training for Partners in Policy Making and Cary will hopefully be in mostly outbound therapies.  I am glad we had some time to get away and am super excited for the changes happening in our lives!