My Family

My Family

Friday, November 29, 2013

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.

Sunday, November 24, 2013

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.

Tuesday, November 19, 2013

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.  

Tuesday, November 12, 2013

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.

Wednesday, November 6, 2013

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.

Monday, November 4, 2013

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.