My Family

My Family

Wednesday, April 8, 2015

Fortune's Wheel

Once in awhile I dream this fantastic dream.  It's spring and I'm in the park with my kids.  We are on a grassy hill.  There is sunshine, trees, and butterflies.  I am sitting on a bench talking to an unknown person.  In my dream I know them.  As we talk I watch both kids play.  The part of the dream that takes my breath away is that there are no AFOs. No wheelchairs.  Cary Lynn runs strong and free. There has been no abuse.  Both of my children are healed, happy and whole.

Sometimes when I talk to this stranger I complain about how hard things are.  Then the person asks me, "Do you want your children well."  I grow silent and don't answer.

Then I wake up.  I wake up to doctors, therapies, wheelchairs, ptsd, and those horrible Afos.

The question is simple, but at the same time a loaded gun.  You would think that any sane parent would say "YES!!  I want them well!" But for me it just isn't a black and white question.  It's so many shades of grey.

First of all, I do wish they hadn't been abused, neglected, and suffered.  I get weary of fighting the world around me for services, going to doctors, and instead of medicines, sensory diets, standers, and medical paperwork that has taken over my craft area. I want my days to revolve around stories, cuddles, giggles, Barbies, and trucks.  I want to call my friends up and instead of discussing Cary Lynn's latest medicines and Marvin's latest therapy talk about what I watched on TV, or what I saw the neighbor doing (probably not, we live in the country and have so many trees that if the neighbors were doing something good, I'd never catch it).

But here is the tricky part.  If you spend your whole life yearning for what you don't have you miss what you do have.

If my children were "well" they would never be mine.  They entered into the system because they weren't cared for.  I would have no Marvin or Cary Lynn.  They would belong to another and that alone chokes me up because this house would be so empty and lonely without them.

If my children were "well" I wouldn't have gotten to know the strong community of women who stand by me.  These women are amazing and their kids are amazing too.  Our children have brought out the best in us.

In my life and travels I have talked with many adults with disabilities.  They inspire me.  Sometimes I get brave and ask the question.  About being "normal and well".  Guess what their answer is nine times out of ten?

No.  Yup you heard me.  So then I ask why?  And they look at me like I've grown two heads.  I get responses and this is a compilation of what is said.

"Yes, some days we do want to do what everyone else does.  It would make life easier.  But they learned that they had so much to offer.  That they could push boundaries, fight for equality, and most of all teach us that just because you are disabled doesn't mean that you you don't have things to offer or that the gifts you have are inferior.  That diversity is the spice of life.  And that we all matter. "

Plus, what dawned on me is if I also spend time wishing my kids well I send a silent message that what they are now isn't good enough.  While I firmly believe that we can work harder to be better people, I don't want my kids to feel like they don't measure up.  Because they do.

I say it often and I mean it.  My kids are amazing.  And they have so much to offer the world.  And they matter to the people around them.  And to me.  So even though I'll probably never call with good gossip about the neighbors I will enjoy the two precious lives that I have and celebrate who they are as is.


Tuesday, March 17, 2015

Hollow Victories

"You are young still, Sister Myrddyn, but one day you will learn that a false victory is a hollow one.” 
― Melissa de la CruzThe Ring and the Crown

I will admit it.  I am competitive.  I love to win.  I also hate loosing or giving up.  Ever.  

I'm a terrible looser.  Especially when it comes to children.  When they loose out on things that they should have it grates my nerves.  I want to overcompensate at times because they missed out on so much.  I feel that they earned these things from the abuse and pain they lived through.  

That is why we had a big meeting yesterday.  Why I sat down with about 12 people from different areas of our children's hospital therapy center.  

Let me back up a bit.  I got out of Early Intervention in our state as soon as possible.  It was a flawed program.  The vision therapist I cherry picked and fought for was the ONLY decent part of EI.  My child wasn't making progress.  So I had heard rumors of a magical place where kids got lots of services.  So I went there.  I went through the evaluations and my daughter was in.  I was super excited.  Here was this great place with lots of bells and whistles and my kid was going to have the best!!  

I was handed paper work and explained the 80% attendance policy.  I patiently filled them in on my daughter's health and said that we may not make it 80%  I was worried, but I was told that it was not a big deal and this was not written in stone.  I could have make ups.  So I signed.  And we started attending.  

Cary Lynn loved it.  I saw improvements.  But I still had one medically fragile kid.  Our attendance slipped and skidded with hospital stays and illness.  When I would ask for makeups I was told that there were none.  Ever.  I fretted.  The therapists hinted that maybe these times weren't her best.  But I held on doggedly.  I tried to keep stuff from getting in the way on Mondays.  But you can't tell your kid NOT to get sick or go to the hospital.  

Then about two weeks ago I got a phone call.  It was the speech therapist.  She insisted we had not held up to 80% and I was being evicted from the program.  I was stunned.  And then I was mad.  I knew that other parents weren't showing up 80% and still had services! I insisted that we were being bullied, I wanted documentation, and I did not agree.  We left it at Cary Lynn being dropped to every other week.  I hung up and I was so stunned.  I cried angry tears.  

Then I started emailing.  I told my team that if we were going to evict people than we needed to up my child's game.  No more rolling, sitting.  I wanted her up in gait trainers, on the treadmill.  I wanted her to move beyond one switch for communication and explore devices that would give her a voice.  I wanted eye gaze technology.  I felt like we were doing as little as possible lately and that my daughter needed more.  Then I called the pediatric advocate and sobbed out everything.  

I was loosing.  Loosing services and a slot and I couldn't have that.  Soon I was hearing from higher ups and we had a meeting.  I spent over an hour with two of them.  I plead my child's care and case. We agreed to have a bigger meeting.  In the meantime I fretted, stewed, cried, and just out and out lost it.  It was stressful.  And it wasn't fair.  Or right.  I wanted to just leave at some points.  But my daughter, patient and cheerful, used her device to let me know she wanted to stay.  So honoring her choice and her voice became my priority.  

So when we came back yesterday I sat patiently while her PT made an effort to get little stiff legs to stand.  And they did.  Briefly.  

I proudly showed her speech person the communication device we are working on in the IPAD.  She immediately said she did not like the brand.  She then said it was "too much" for my child.  And that "children like your daughter" don't really understand that much and "probably never will".  That speech there even though they "presumed confidence" know that most children can't.  

I had no words.  I was so crushed.  I wanted to cry but reminded myself that we had a meeting.  It could be addressed there.  

Next was OT.  Cary Lynn rocked out eye gaze.  She also played some awesome games.  It was the best I had ever seen!!!  I felt soo much better.  

Then my husband came and we started the meeting.  The hospital advocate came too.  The meeting was broken down into two parts.  The first part was insisting that the 80% was right and fair for all. That did not sit well with me.  I also brought to their attention lack of make ups.  I couldn't make them understand me and I didn't understand them.  The second part consisted of therapists reports. Of Cary's achievements.  The goals I had asked for were being debated.  I fought harder.  I was going to win this one!  I did get some of my goals in place.  But only for 6 weeks.  If she does not "move forward" then it is not the time.  After all they didn't want to "therapy her to death".  Her OT wouldn't even LOOK at me or contribute about how well she was doing.  

In the end it was agreed that we would continue weekly services.  For 8 weeks.  To see if we could make our 80%.  They also admitted (to our advocate not the family) that they handled this wrong. We also have some new goals and things to try.  I also get a case manager that I meet next week to help me handle and coordinate things.  

So was it a win?  To most yes.  We have our services in place.  The hospital also knows that I'm not so easily pushed around and may think twice about how they handle us.  They also are willing to try some new things with Cary Lynn.  She gets a chance to try to walk.  So in that regard, yes it was a win.  

But in so many ways the win is hollow.  And it is overshadowed by so much painful loss.  The loss of faith in my child's team that they really have our families interests at heart.  The loss of respect for people who think my daughter has the IQ of a carrot and is not worth their time or effort.  The loss of trust that they will make the best therapeutic choices for my child.  That they will challenge her to try and believe that she can.  

For me victory has never been more bitter.  It leaves a rancid taste in my mouth and pain in my heart. The most painful part is that I will have to take my child away from a place that she loves and ASKED to be in to find another one that will support our family.  How do you explain to a three year old that the people she loves do not see her as one with value?  One who is worth so much more than they can see.  

Time will heal the wounds of hollow victory.  We are stronger than this and I know that there is so much more out there for my child.  I hold on to the hope that hollow victory can be replaced by true victory in a place that supports my daughter and values her as a person who is capable and able to do so much more than the limitations that people set upon her.  

Monday, February 16, 2015

The Disney Top Ten

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

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

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

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

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



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

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

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

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

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

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

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

7.  Being treated like others matters.  

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

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

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

5.  Special needs parents are rock stars!  

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

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

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

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

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

3.  I can handle what life throws at me. 

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

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

2.  My husband is awesome.  

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

1. My kids are amazing.  

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

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

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

Friday, February 6, 2015

Happy Tube-iversary!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, February 3, 2015

Sanctuary

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

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

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

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

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

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

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

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

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

Wednesday, January 21, 2015

Trauma Woes

I admit it, I hate trauma.

It colors everything you do and tips your world upside down.  It takes your soul and leaves it battered and scarred.

Last week Marvin had a huge trigger episode.  Normally we know when they are coming and can head them off at the pass.  This time it snuck up on us like a thief in the night.

We were getting ready for bed.  The rage came without warning and we lost our happy little boy.  For about an hour,  He was so angry and discombobulated.  All we could do is hold him tight, rock and soothe him.  We called his therapist at 8pm.  We racked our brains afterwards.  We couldn't think of anything.  I cried all night long.  I cried because it isn't fair.  I cried because it isn't right.  I cried because once again my child had a memory trigger and had to relive horrific abuse.

Normally he bounces back.  This time has been different.  He and I spent the weekend sick on the sofa.  This week he has clung to me.  I can't even go to the bathroom without him hanging outside the door.  I realize as a mom that you give up the right to pee privately anyway, but still this has been different.

We realize that he has a lot going on.  We have a once in a lifetime trip to Disney coming up!  While most kids are over the moon the trauma child's voice echos "Will I be safe?  Will you take care of me?"  He will be excited once we get there and he gets involved.  I know my boy.  But right now it is one anxiety after another.  Will there be bathrooms?  What if there are bad people there?  What if something happens to our car?  What if a shark eats us on the way down?  Even the silly becomes something to be feared.

I have to remind myself how far he's come when things go bad.  I remember when it used to be a struggle to get him to preschool.  How when we got there he spent some days unhappy and the car rides home screaming that he was never going back.  It took a lot of work and therapy to discover that he didn't like that I was the teacher and leader and when he misbehaved guess who he got sent to? Now mind you I'm not a horrible person.  Most kids enjoyed having extra teacher time.  We put a few works back on the shelf, rolled some rugs, looked at a book.  Come on, this is some serious individualized attention.  I swear I had one child who made it their mission to see me everyday:).  But for Marvin it was more of an issue. For him it was the fact that he was "in trouble" with mom.  And moms aren't safe people.  They hurt their children.  Over and over again.  If I could go back and have a do over I would have insisted that we did it differently.  But I didn't know.  So we muddled through the best we could.

Now he enjoys school.  And he realizes that yes, mom gets flustered, but mom is safe.  Mom cuddles, tussles, plays, and most of all loves her kids.  With all her being.

But to be hit with this storm last week was hard.  It was watching everything I worked so hard for be unravelled right in front of my eyes.  His therapist called it pre-verbal trauma.  In a nutshell something happened to Marvin when he was a tiny bean that was so horrifically bad that it was repressed until now.  We did everything right.  We met him at the level he was at.  What hurts is that whatever demon it was may be back again.

So this week I feel like I've been on eggshells.  I've kept my voice quieter.  Sharp words that form on my tongue have been stifled.  Lots of cuddles, hugs, books, songs, and whispers.  Whispers that say, you are safe.  You are loved.  Nothing is going to happen to you.

He's finally coming around and I feel like I've battled a tiger.  And I'm not quite sure who won.  But I know this.  Marvin is safe, he is loved so very much.  And if he can't believe it right now I'll just believe harder for the two of us.  Because I'm his mom and his sanctuary.  And I also know that he's a survivor.  And whatever the trauma or the storm we will meet it head on and together.



Wednesday, December 24, 2014

Invisible Solider

Dear Solider,

The other day I saw you at the grocery store.  You were chasing your little one around.  A lot.  You looked tired.

"Travis, put that down!!" "Travis stand still!" "Travis stay here!!!"

Then you turned your back to load your groceries and Travis came up to me.  He held his hands up to me and gave me a hug.  Then he proceeded to load ALL the Hershey Bars in my shopping cart (that's a boy after my own heart).  You turned around looking panicked and opened your mouth to yell, but I stopped you.  "He's here!"

You came over looking frazzled and not really in the happy shopping spirit.  You opened your mouth to apologize to me.  But then you heard laughter and turned around to see your son tickling my daughter.  In her wheelchair.  Two children.  One with Cerebral Palsy and one with Down Syndrome. Your frown turned into a smile as you recognized another invisible solider.  We chatted and laughed about our kids and you took your son home.  I unloaded all the chocolate and checked out.  Your son brought a smile to my face the rest of the day.

You see, not all soldiers are stationed far away.  There are many you see every day.  We don't fight with gun and grenades.  We are your neighbor or even a member of your family.  We keep in the shadows so we can fight for the most important thing in our lives.  Our children.

We fight our own enemies.  We fight insurance, doctors, therapists, and supply companies.  We fight so our children have access to all they need to help them grow and thrive.  Somedays we even fight the world so they can see how wonderful and amazing we know our children are.

We stand with our troops.  When one of them takes a hit we gather around them.  We offer encouragement, resources, and most of all we pour our hearts and strength  into them so they can stand once again.  We are there for each other.

Here's to you my troops and my friends.  You have helped me make it through many battles this year and without you I may have been taken prisoner by the enemy of despair.  We have fought long and hard together and I am proud to stand and serve by you all.  May your days be full of hope and victories and your losses be few.  Know that I am there ready and willing and able to battle with you.