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!

One Year Ago

It is hard to believe that life has moved so fast for me.  It has been a roller coaster ride.  Up, down, upside down.

One year ago my life as a teacher, mother of one little boy, and one rabbit would take a sharp turn.

One year ago we sat in a social worker's office and heard her talk about a little girl who had a lot of issues and needed mama and daddy.

One year ago I looked over a drawer of paper work, a brief list of medical terms I didn't understand, and I looked that social worker in the eye and said, "I understand she has a lot of problems, but I believe that we would like to adopt her."

One year ago I had to make a choice to leave a wonderful job and co-workers for an unknown future.  I didn't know the battles that lay ahead of me, or the fact that I possessed a courage and strength that I didn't know that I had in me to fight and advocate for a child that was so weak and frail  I was afraid to leave her out of my sight for more than a minute.

One year ago I told our teen social worker that she needed to fight for this child and step up to the plate to bring her home.

One year ago we saw a picture that looked a lot like this one:

I didn't fully understand all that I would be asked to give up, change, and learn.  I didn't know that I would live in doctor's offices and hospitals half as much as I have.  I didn't understand that I would spend less time on myself and that some times Marvin and Shannon would get short changed because I just didn't have enough left to give.

I also didn't know how strong I was, or how I could sit and scream at doctors when they just didn't want to hear what I had to say.  Or that I could be a fast learner and swallow medical encyclopedias before doctor's visits.  That I could spend hours researching a single topic just so I didn't look like some uneducated idiot.  Or that I could survive on three hours of sleep and lots of coffee.  Or that I could reach out to hurting parents just starting the same path I set foot on and offer support, encouragement, and most of all hope.

If I could have looked ahead and seen all of that drama, do you know what?  I would have done it all over again.(Well, I may not have yelled at ALL of the doctors, just a couple)  My daughter and son are the two most amazing people I know.  They have survived abuse and neglect and thrived.  We are not a perfect family and I am NOT a perfect mama.  Marvin will tell me that.  Frequently.  But my children have made me better and stronger.

A year ago a little girl named Harmani was introduced to our family.  She has gotten a new name and a second chance at life.  Like a phoenix reborn, she has shed her old broken feathers and has grown new, stronger wings.

I love you Cary Lynn Fields.  You are amazing and you have helped make me amazing as well.