Well, it's been awhile

Just a quick post to check in.

We are well into 2014, and Ian and I have both settled into our new school lives.

With my co-worker, Regan

I LOVE my job at Holladay.  And I'm not just saying that since one of my co-workers wants to follow this blog, ha ha!  Working again is so rewarding, and the money doesn't hurt either!  Besides, it's FUN to be out in the world again.  I guess I'm just not wired to be a stay-at-home mom.  That said, I don't regret those days at all, and I know I was lucky to have a chance to try it.






Ian is settling into 6th grade too.  I love his teacher; she has worked so very hard to get him adjusted.  The morning routine has worked out well for everyone, and I actually have about 30 minutes at home before the bus drops him off.  We are continuing with his music class and we tried a soccer program in the fall.  In January Bishop Gulick confirmed Ian in a small ceremony in the St. Giles' Gate room; it was amazing!  Everyone who was there commented on how special it was and how well Ian did.  So proud of him!

Ian with Rev. Thorpe and Bishop Gulick

Ian throwing snow at me!

The big news of the winter has been the weather.  We missed many days at school because of snow and ice.  We even had a few days that were delayed due to frigid temperatures.  The days are starting to get longer and we are definitely looking forward to Spring!

Some new beginnings

I'm going to miss this view

Well, it was quite the summer.  And I can't believe it's been almost 3 months since I've posted anything.  Guess I spent a lot of time working on my tan!

The biggest news for me is that at the end of June I was offered a job!  It is full-time as an ESL instructional assistant at the elementary school where I worked a few years ago.  I credit my former (and now current) colleagues with a)telling me about the position opening up and b)putting in multiple good words for me with the principal.  I will always be grateful to them for their support!  It will be challenging since I have not worked in ESL before, but I'm looking forward to learning a new position.  This will be my first permanent job since I left USAirways 9 years ago!

In late July I got to take a SOLO trip to Martha's Vineyard.  Solo meaning no husband or child, just me.  I met up with my sisters and other family members for a beautiful week on an amazing island.  It was a fantastic trip!

Beautiful Martha's Vineyard

Ian had a six week summer school session that started in early July and ended the second week of August.  We spent a lot of afternoons playing in the pool, when the weather permitted.  It was one of the coolest and wettest summers I can remember.  Kung Fu Panda movies were his obsession, and he knows all the characters names and can do some great impressions of them.  Now I hope he can do an impression of a Sixth Grader because tomorrow he starts (dunh dunh duuuunh) Middle School!

Ian's new school

Yep, the little monkey who still looks like about a 3rd grader on a good day, will be attending our local middle school.  (BTW, what better name for a middle school than MOODY, ha ha!)  I have been mostly okay with it, but here I am the night before the big day and I am scared spitless.  Because while he is there, I will be here.....

My new workplace

And since my hours are 7:20 until 2:50, I won't be home to put him on the bus.  I have almost always managed to be home to send him off to school, so this is a big deal....mostly to me.  I know it will work out but I admit I have some guilt.  At least our schools are very close to home and Rob is available until his classes late in the afternoon.

So, goodbye summer 2013.  You gave me plenty of happy memories to get me through what promises to be a busy and challenging year!

The list gets longer

I love my church.  I really do.  But there are days when it is very difficult to go.

Wait, what?

Yes, today was one of those days.  And if you're a parent of a child with special needs, you will quickly understand where I am coming from.

It is the tradition at my church to celebrate the Seniors that are graduating.  They are all acolytes, i.e. they participate in the worship service in various functions.  They have been doing this since they were about the age Ian is now, and now they are moving on.

Since I've been attending this church for over 10 years now (really?), I've known these young adults since they were around 8 years old.  They are all wonderful in their own special ways, they are all heading to college and getting ready to step into the big wide world.  I'm happy for them and for their parents, believe me.  I'm not just saying it.  Three of their mothers are good friends of mine.

And yet, as I sat there during the presentation of the gifts and the sweet speeches, a part of me just ached.  While I was crying for the sweetness of this big moment in these young lives, I was also crying for yet another thing that my child will not be able to do.  The list just seems to get longer.  He is "graduating" from 5th grade this week, but his teacher felt, and I agreed, that he would not be able to handle the special ceremony that they will do at the school on Tuesday.  We're going to do a little celebration in his classroom, and I'm worried that he won't even be able to handle that.

We live in a very social world.  I never really thought much about it until Ian came into our lives.  If there was a party, we went.  Niece graduating from high school?  Sure, we'll come.  Not anymore.  Ian simply cannot handle it.  Even if we go to events with him, I can hardly enjoy them and he is generally unhappy.  So, you adjust.  But when those events are those which your child is expected to be part of, it gets trickier.  I posted on Facebook about Field Day and heard from several other Moms that agreed it was not something their children enjoyed.  Hard to imagine, isn't it?  But this is our world.

I hate Fragile X for many things, but I think the hardest thing is the joy of childhood that has been stolen from my child.  And, admittedly, the joy that has been stolen from me.

"Love is at the Heart of Healing"

The temperature inside our church yesterday must have been in the 80's thanks to a broken compressor in the air conditioning system.

I was tired and a bit stressed about the hand bell piece we would soon be performing.

And, to be brutally honest, I was not paying as much attention to the sermon as I should have been.  Then these words jumped out at me.

"Love is at the heart of healing."

Wow!  That got my attention.  I actually took out a piece of paper and wrote it down.

While those words can mean a lot of things to different people, for me it was all about Ian.  With the events of the last few weeks concerning the STX209 drug trial, it was a good reminder that all the drugs in the world can't give my sweet boy what I can.  Love.  Pure and simple, it is the most powerful medicine there is.

 It is a gift from a God that loves us.

I would be lying if I did not admit that there are times when I am angry at God.  Why my boy?  Why all of our children?  Is it a punishment?  Did this happen because we did bad things, or is it to strengthen us in some way?

Then I calm down and realize it just IS.

  I believe God gave us the curiosity and the great brains that we have to make things better, to find cures and treatments, to figure out ways to adjust to what we are given.  And if this treatment doesn't work, or if it does work and someone says we can't have it, then there will be those who fight those decisions.  And they will use the talents that they were given by God to get it done.

But, in the meantime, we will heal with love.

Ian has been off of STX209 for almost a month.  His behavior at school has been mostly great, he has been funny and loving and doing great things.  He wakes up every morning and goes to bed every night with a smile.  It's not perfect, but it's good.  Really good.

And his love is at the heart of healing me too.

Ian reaching for a bubble as a toddler

Reflections on the end of elementary school

 This was the beginning.

Walking to bus for first day of pre-K

On a cold January morning in 2005, right before his 3rd birthday, I sent my "baby" off to school.  On a bus.  By himself.  My husband was serving in Afghanistan and after that big yellow bus left I called my sister and I'm pretty sure I cried.

Ian did not.

He was a brave little trouper and although his first months in the school system were not easy for him, he has never given me a hard time about getting on the bus or going to school.

It was not the typical first day of school, and his elementary education has not been a typical one either.  It has been filled with meetings, IEPs, re-evaluations, behavior plans, visits to doctors and clinics.  He does not have a typical report card and he doesn't take typical tests.  He sees a speech therapist twice a week, and an OT checks in on him periodically.  He is in a "self contained" classroom; he cannot handle general education. Or the cafeteria.  Or assemblies.  Or field trips with his grade level.

 Every time I receive something about events for the fifth graders, events that I know Ian won't participate in, a little part of me gets very sad.  I often wonder, what if?  I try to imagine him as a "typical" kid, with friends to hang out with, bugging me to take him places, complaining about homework, thinking about his future.
But, thinking that way does not help anything, so I try my best to focus on how far he has come.

First day of 2005-2006

 And, he has come far.

First day of 2006-2007

And he will go far too.

First day of Kindergarten

 I'll never stop fighting for him.

First day of First Grade

I will never stop celebrating every single one of his accomplishments, no matter how small.

First day of Second Grade

I will never stop providing him with every opportunity to have fun and grow.

First day of Third Grade

 I will never stop laughing with him.

First day of Fourth Grade

I will adore him always.

First day of Fifth Grade

I am his Mom.  And I will continue to support him and do everything I did in elementary school when he goes to middle school in the Fall.

So, goodbye to elementary school.  It's been a great experience and we've both learned a lot!

What a good day for Ian!

It has been 10 days since Ian took his last dose in the STX209 drug trial.

Today was a wonderful day from beginning to end, and a good reminder that in spite of the events of the last few days life does go on.

Ian has been eating different foods for dinner four nights in a row.  In our little world, this is HUGE news.  The first night was pancakes.  The second night we had a power outage and in spite of all the wackiness that caused, he ate pork ribs....a first!  Last night it was hamburger and tonight it was mac 'n cheese.  This is something that we have struggled with for years, and now, of all times, it is finally happening!

Ian struggling with his dinner two years ago

Our weather today was rainy and I was wondering what we would do all day.  We did a trip to Target, and he was good as gold.  I let him use a Target gift card to buy his DVD and he handed it to the cashier and said thank you when she returned it.  He even kept the DVD in the bag all the way to the car.  Wow!

Ian at Target a few weeks ago

He ate a good lunch, never said "shut up" or "stupid" once (the words that have been vexing us off and on for months), hung out with me in his room while I went through his clothes, joked with me while we watched Sponge Bob, and did a very good imitation of Plankton's evil laugh.  He was a joy all day long!

I hope this helps the families that will have to wean their children off  STX209.  Of course we were not on  it for very long so the impact is less for us.  But our kids are still OUR KIDS no matter what medicine they are on.  We may be pleasantly surprised by what they can do when they have to stop.

At least, that's what I'm hoping and praying for.

 

The End of STX209 for Us....And Now Everyone Else

I cannot say that I am liking the year 2013 very much.

I'm not superstitious about the number 13, but I'm starting to wonder if I should be.  We have not had much luck with anything this year so far.

Last week we finished up at Duke.  It was our sixth visit since February 5th.  Our trips were mostly great.  We got to spend time with my sister and brother-in-law in Chapel Hill.  Ian was a good traveler and after the first visit to the clinic, he was a good patient.  We LOVED the staff.  Every single one of them cared about Ian and his future.  Ian got more experience with parking decks and elevators and food courts and navigating large, unfamiliar buildings.  And last week we stayed at the hotel they provided, and that was another good experience for him that we had not had in a few years.

Ian got his own big bed at the hotel

Heading to our room at the clinic after lunch

Part of the Duke Hospital complex

But, on May 3rd, we found out Ian would not be participating in the open label extension after the study was over.  We had been told there was a good chance he wouldn't, but we went ahead with the study and hoped for the best.  I was, naturally, disappointed.  But, since it seemed like the study was going so well, I just kept the happy thought that the drug would be approved soon in my head and kept on.

Until yesterday.

It was announced that ALL the families that had children in the open label extension were going to be cut off from the medication in a couple of weeks due to financial problems with Seaside, the drug company that makes STX209.

This is a huge disappointment for the entire Fragile X community.  The Facebook posts and blog posts I read last night were heartbreaking.  One family found out on their son's birthday.  Another had been on it for 3 1/2 years and saw their son blossom and now, well, who knows?

It's all about money, and that will make a lot of people angry.  It makes me angry.  When you think about the way money is wasted on so many other things, it just kills me that something that improves life in such an amazing way is going away.

Or is it?

It's still early and I'm sure there will be more information coming in the days ahead.  And, this is a dedicated and hard-fighting group.  I know they will not give up.  The fund raising events will continue, the trips to Congress will go on.  There are other drug studies in the works and participation will continue.

So, I'm asking for your prayers.  And a few dollars wouldn't hurt either.  The National Fragile X Foundation does so much for us, so if you feel moved to do something concrete about this, please make a donation to them.  Or, the next time that I post a link to write a Member of Congress, please take a minute and do it.

I was pretty good about not crying about this until a few minutes ago when I read some of the responses to my Facebook post from last night.  We are blessed with so much loving support.  We are on a prayer list in Kentucky (thanks Jenny Beth!) and at least one of our friends is spreading the word on their Facebook pages.

We are down today, but not for long.

And 2013, I'm not going to let you make me superstitious!