My Family

My Family

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.