Wednesday, September 3, 2014

High School Open House

At 15 years old, Parker is now a sophomore in High School. It's ok if that thought blows your mind, it certainly does mine every single day.  15.  High School. Sophomore.  I'd love to go on about how our kids grow up too fast but that's not my point... tonight, so I'll move on...

Tonight was the Canton High School Open House.  Open houses are something I learned very early on that it really wasn't necessary for me to drag Parker along to (although I tried for a few years before I figured this out).  He would lay on the floor, hit, kick, do anything he could to get out of being there after I literally drug carried walked him into the school. I don't recall when I stopped bringing him but it was in early elementary school.

At some point in Middle School (5th - 8th grades) he decided, with some persuasion, he would go.  It was such a huge milestone I can't believe without looking back I don't know exactly what year it was.  Instead I remember every detail of the night.  I clearly remember walking through the extremely jam packed halls with my son.  With my son.  It was surreal to say the least.  It was extremely crowded, packed with faces of parents I had come to know well over the years, friendly faces, encouraging faces, full of pride in this accomplishment for Parker faces, only trumped by the many greetings for Parker from their kids.  It was a night I'll never forget.  Except the year, clearly I'll forget that part.

Parker transitioned beautifully to high school. He's really flourished there.  Maybe its maturity.  Maybe it was time.  Likely it's the result of the many, many members of the incredible teams of teachers, therapists and professionals he's had on his side since he was 3.  Each person on his team throughout the years has played an important part in helping Parker become who he is today.  There will never be a time where I say "This was all me"  or "us" as his parents.  This was a team, a team we were a very involved part of but a team way bigger than just the 2 of us and I am very thankful for every single member of that team.

The open house is something Parker has been talking about since school started, he has it on every calendar of his.  He's been excited about it and reminding me constantly.  So odd and very unlike him but something I totally encouraged (as did his teachers).  Even when he is this excited about something, it doesn't mean he will go... but he did.  Willingly and excitedly.

For the high school open house, you pick up your child's schedule from the tables in front of the auditorium before heading inside for the welcome and instructions.  Then you follow your child's schedule through each class period (6 minutes long each) to hear a bit about the class from the teacher and wrap up in home room at the end.

Perfect, we can totally do this!  I get his schedule and notice the main entrance to the auditorium is rather packed so I begin to open a side door to go in just as Drew is opening it to come out.  DREW, yes DREW! If I were a person who questioned if God existed, it's little things like this that would prove to me He does.  Drew was exactly who Parker needed to see at that moment to calm his anxious nerves.  Drew has a knack of making life better for Parker.

I wish this wasn't blurry, it's such a great picture of Parker and Drew!


After the announcements we went on with the tour of Parker's day.  Now, this... THIS is where if you were skimming you need to stop and really read because this is what is so important and has left me with a sense of peace and pride.

Parker has 3 classes that are general education classes (Art 2D, PE, Tech 1), 4 counting homeroom.  We already know his special education teachers are amazing, they are part of his team and really - phenomenal.  What I loved about meeting the other teachers was after two of them finished talking about the class time to those who were there they made sure to say to us how much they enjoyed having Parker in their class.  They pointed out how much he enjoys class, how he participates, how he is part of the classroom - sharing his work and/or stories.  This meant a lot to me.  Not just because they enjoy having Parker in their class but because it shows they really understand and support inclusion which is huge!

I know there doesn't seem to be much that can top this.  Parker wanted to go to open house and did - successfully.  Parker's teachers said wonderful things about him - awesome.  But there is one more thing and possibly one of the most important of the night to me...

Not only did the teachers talk about how wonderful Parker is but they talked about how amazing the (general education) students are with Parker. Some went as far as to specifically name another student and talk in detail of how that student offered to sit by Parker the first day, has helped him and shows extreme patience with him all the time.  They talked about how kids in the class pull together to help Parker when he needs it.  They talked about how amazing our kids are together.  This... this is success.  Not just for Parker. But for all of our kids.

Each of these kids who takes time each day to talk to Parker, in class, in the hall, at lunch - they impact his life in the most positive way.  Each of these kids who takes time to let Parker into their life... has that positive impact returned.  This... this is why inclusion is important.  It's more than just the difference it makes in Parker.  It's the difference it makes in every single child and teacher in our school.  Our kids are better because of each other.

I cannot even begin to tell you how much of a sense of peace this brings to me.  It's scary to send my son to school each day... scary.  I hear the horror stories.  I worry so much about him.  I needed this.  I needed to hear he continues to be accepted.  He continues to be involved with his friends and make new ones.  He has fewer opportunities at the high school to be included in classes, my fear was he would end up lost in the shadows.  He's not. Not at all.

For that, I thank each of you - the parents of the kids at CHS who have become Parker's friend.  You are doing an amazing job!  Your child, your children, are compassionate, helpful and caring.  Just as you smiled and said 'Hi' to Parker in the halls tonight, your children are taking it a step further each day and really reaching out to be his friend.  I hope your hearts are filled with as much pride tonight as mine has been.

If you needed a reason to hug your child tomorrow, let this be it. With gratitude and thanks for being a friend to someone extra special who really needs a friend to help support and encourage him and not letting him get lost in the shadows of the high school.

With all of my heart, thank you.

Tuesday, September 2, 2014

My Head Not Work Right

There are not a lot of days where I feel like I have it all completely together, I'm beginning to think there is a reason.  Each time I have one of these days, something happens, something catches me off guard and crushes me.  Today was no exception.

It all started out really well, I was even up early enough for a long shower before my day started.  The kids had great days at school, I had a great day at work, the roast & potatoes that simmered all day in the crock pot were cooked to perfection for supper, dishes were loaded in the dishwasher, homework was done and I got Allison to cheer-leading practice on time. I was feeling rather confident and proud of myself after returning home from Allison's practice. Allison settled in to her room to practice her flute and Parker and I settled onto the couch to watch the Cubs game. "I've got this, I can totally rock this single mom thing" I thought to myself as Parker turned on his iPad to keep tabs on the scores of all the games being played tonight while watching his team "spank the Brewers".

While the sounds of Allison's flute filtered up the stairs from her room below I was drifting off in my mind about how nice it was to just sit for awhile, especially with Parker by my side on the couch (we usually sit in different places) Parker leaned over and nudged me, "Mom...?"

"Yeah buddy, what's up?"
"I can't find it"
"You can't find what?"
"I can't remember"

"Sometimes I can't remember things too" I reassured him.  "Sometimes I just forget"  He was frantically looking through his iPad.  "I can't find it."  He repeated.  "It's ok, sweetheart, do you know who is pitching tonight?"  Redirection is most often my saving grace but he wasn't interested.  He handed me his iPad, "Find it, please" he requested with great big blue tearful eyes.  "Absolutely, I will try. Hmmmm... I wonder how Tom (the cat on his iPad) is doing?"  Parker, "NO, NOT Tom. That's NOT IT".

He was clearly frustrated.  I went back to reassuring and redirecting.... "Sometimes I forget things.  Sometimes I just can't remember. That is frustrating.  Right now I can't remember who is pitching for the Cubs tonight.  I will look at the score instead.  Oh look, they are winning, Go Cubs!!"

In the moment of silence that followed, I thought I had won. Yet, I had not.  As he fumbled to find words I stuck with my redirection hopes, "Do you know who is pitching tonight?  Is it Felix?"  Complete and utter backfire.  Frustration filled his face, he grabbed his iPad from me and as he started flipping through it said," That is NOT IT. NOT baseball.  I can't find it.  Starts with ... "P"..."  I quickly jumped in with every possible app related "P" word I could think of, his frustration grew... "No W" he said and before I could say "Ok, let me look" he sadly says "No, I don't know. I can't remember."

"Let's try a big breath, ready?  Breeeeaaaattthhhhheeeee and blow it out"  as he did it with me, my confidence returned.  "I could use a hug" I said hoping he would continue to do as I did.  Too soon.  (hanging head, I knew it too) Too soon.  He slammed his iPad back onto my lap.  His frustration was taking over.

"I can't remember" he said, so frustrated the tears began to well in those big blue eyes again.  My heart sank for him.  I said, "Let's think together!  We can do this, we will get it!"  That's when it happened.  The son I had waited 10 years to have a conversation with, 10 years to really talk... 5 years later at 15 said those words that confirmed what I had wondered all along...

"I can't. My head not work right."

As I fought back my now welling tears I said, "You're head works great! Sometimes we just forget!"

"Stupid head." he said, "Stupid head not work right. I not remember. Stu..."

"Your head is very smart" I said cutting him off.  "Very smart, Parker.  Your head is very smart. YOU are very smart.  It's ok to forget.  Smart people forget all the time."

I was completely caught off guard by his words, my heart was simply broken.  Broken for him. Broken that I know he realizes how hard things are for him compared to others. Heartbroken that he feels this way. Heartbroken that I passed the gene to him that has left his "head broken" and I can't do anything to fix it for him.  It was a defining moment where time stood still.  A moment quickly broken by his frustration.

In the blink of an eye and honestly faster than I could even attempt to describe his frustration won. He grabbed my arm and as he pulled it close he leaned forward mouth wide open and started to bite down.  "Oh no you don't" I told him as I began to pull my arm away. "I CAN'T REMEMBER. HEAD NOT WORK RIGHT" he screamed at me as I pulled my arm away, luckily he let go barely leaving a mark, other days I have not been as lucky. It was a sign he still had some control.

I stood up, iPad in hand and followed through with the punishment we have for biting even though I knew the consequences could be hard on us both.  "No biting, iPad time out." I said while walking to the kitchen to put it in it's timeout place.  He followed, clearly angry, still stuck on not being able to remember.  As I put the iPad down I turned to him unsure of his next move. "I could use a hug" I quietly told him wanting to keep control of the situation. "No hugs" he replied with tears streaming down his face.  "Ok" I respectfully said in a quiet voice, "no hugs".

As I walked away, from the corner of my eye, I saw him raise his hands to his face. His body tensed up as he began to hit his hands to his face.  Frustration had won.  I braced myself knowing he would likely come full force at me with a swinging fist and calmly said to him, "Breathe in" as I took a big breath "blow it out" and exhaled determined not to let the aggression within him win.  Standing in place he dropped his hands, his body still clearly very tense I stepped forward closer to him and said, "I really need a hug, can you please give me a hug?"  As he began to step forward towards me I was unsure what to expect, I tried to relax my tense body so he wouldn't feel my uncertainty as I waited to see if he would actually hug me or not.  I knew the chances of him biting my shoulder, pulling my hair or wrapping his arms around me and hitting my back were just as equal as the chances he would hug me.  It was a flip of the coin I had to take a chance on.

As he leaned in with open arms I held my breath waiting to see what side of the coin would land when I heard his shaky voice say "I can't remember... I not remember... my head not work right." as tears began to fall down his face and he gripped me with the amazing hugs he gives I knew we were going to be ok.  No meltdown this time, just love.

At first I said nothing.  I couldn't.  My heart hurt entirely too much.  I simply hugged him and cried with him.

He broke the silence saying "Stupid head."  I stepped back from him, looked at him and said, "Hey now. Enough of that. That is not true. You are the smartest boy I know.  It's ok to forget.  You can forget and still have a smart head.  It's ok.  I promise.  It's ok.  YOU are so smart."  I rubbed the hair on his head resting my hand on his cheek that was wet from his tears and said, "I mean it.  You're head does work. It works good. You have the most perfect head ever."  then leaned in and kissed his cheek momentarily forgetting that is not allowed.  He quickly wiped away my kiss from his cheek reminding me he hates kisses before leaning close to wipe his face and now snotty nose on my shoulder.

"I needed to wash this shirt anyway" I told him with a grin.  His smile returned.  Our cycle was broken.  He was ready to move on.

As we returned to the couch to watch the Cubs game and he began to fill me in on who was pitching, I could hear the sounds of Allison's flute fill the room again from where she was practicing downstairs.  My mind drifted off as he continued to cheer for his team, this time with a question answered.

"Does Parker realize he is different?"

Yes.  He does.  He knows his head does not work like everyone else's.  A tear slowly made it's way down my face as I realized the bubble I have tried so hard to keep him in has been popped.  I had hoped and prayed he would never realize how much more he struggles than his typical peers.  That his laughter would always win over friends and he would be seen for who he is in his heart, not for what he's unable to express. While I believe many of his friends do see this, I also know the word "stupid" didn't come from home.  "Stupid head" came pieced together from somewhere, my hope as I lay down my head tonight is that it came from TV and not something he's heard or been called.

My mind focused back on the incredible sounds of the flute coming from Allison's room, calming for a pause in time before wondering... does she realize it too?





*For those new to my blog, Parker and Allison were both born with a genetic condition called Fragile X Syndrome as a result from a gene mutation that I unknowingly carried and  passed to them.  Please take time to learn more about Fragile X Syndrome, the leading cause of inherited mental impairment and the leading known genetic cause of Autism at www.fragilex.org 


Friday, August 29, 2014

Where everybody knows your name...

I've been wanting to write about my experience since the 14th International Fragile X conference started... and ended... over a month ago.  I'm a little behind in writing but the experience remains as fresh as ever while feeling like it was forever ago.  Weird how that can be, isn't it?

My conference experience is a little (maybe a lot) different than most for a couple reasons.  Most obviously, because I am working and part of the faculty.  Or possibly even more obviously... because I'm Holly and in my heart with all that I am, I want this to be an incredible experience for everyone who attends.  While I need to hear what's being said in the sessions, I rarely ever make it to one.

Let me back up a bit and give you some history that might help with putting this all into perspective.

Parker and Allison were diagnosed with Fragile X Syndrome in the spring of 2003, Parker was 4 1/2 years old, Allison was just 7 months old.  Between Parker being diagnosed (March) and Allison being diagnosed (May) we saw a geneticist who laid out every out dated worst case scenario known to man, including the advice to "not have Allison tested". As most know, after a follow up call from the National Fragile X Foundation (NFXF)  and talking with Deborah Kwan and Dr. Randi Hagerman, my life changed significantly. I had hope again that Parker could do anything and had Allison tested immediately.  I always say Parker and Allison are the reason I get out of bed each day - and they are.  They are my heart and soul.  The NFXF is my strength to get through each day.  From the beginning they have been there for me and provided me with every bit of information I needed to help Parker and Allison on this journey. It all started with that phone call from Deborah to check on me and see how I was doing.

That August my mom and I went to Cincinnati, Ohio to attend my first Fragile X educational event hosted by the Tri-State Fragile X Alliance, a Community Support Network Group of the NFXF.  Dr. Marcia Braden, Louise Gane, and Dr. Randi Hagerman were speaking at the 2 day event.  It was there I was finally able to meet Dr. Hagerman (who we had an appointment to see the next month at the M.I.N.D. Institute). The event was organized by the dynamic husband and wife team of Joe and Leslie Garera who have a son, Nick, with Fragile X.  Meeting Joe and Leslie, being welcomed by them to their educational event, spending time with them and the speakers was so impacting on me.  I wish I could say I remember other families I met but I don't.  I remember being scared to death, mostly over what I might learn, and very out of my comfort zone.  Joe, Leslie, Louise, Marcia, and Randi each took time to talk to me and help me see the hope that is part of our lives.

The next month we were in California for the week of testing, evaluations and recommendations from the amazing team at the MIND Inst.  We were embraced by Dr.s Randi and Paul Hagerman, Louise Gane not only took time to meet with us during our visits but came to the Ronald McDonald House where we stayed to spend more time together.  We met the amazing Kerrie and Laura (SLP/OT) who lit up the room when they walked in.  It was a jam packed week made possible by our incredibly supportive church (Trinity Lutheran) with an abundance of information we attempted to absorb between tests, forms and a little down time.  We also took a drive into Walnut Creek to meet with the staff of the NFXF, Robby Miller and Teddy Palmer, both who I had spoke to many, many times took time away from their day to really sit down and listen to us, get to know us and take a few pictures.  Every minute of that exhausting week was incredible. Every person we met was so terrific there is simply not an adjective incredible enough to describe them or explain the impact they made on my life. There was one moment that stood out from all of the rest though...on our last night there while standing in the kitchen of our Ronald McDonald house as I held 11 month old Allison, Louise Gane reached out and held onto my arm she said, "I know this is going to sound crazy but I also know I am right, I can't explain it but it's going to happen.  You... YOU are going to make a huge difference in the fragile x community. You are going to do amazing things for the families.  I can see it in you. You are going to make a difference."

I remember looking at her and thinking "You have no clue, lady!" which showed by the look on my face.  She simply said, "Trust me on this one.  One day, a few years from now, I'm going to say "I told you so."" We said our goodbyes and prepared for the trip back to Illinois.

I have always been an extremely shy person.  Sometimes, it comes off as snobby. I'm not snobby at all, I'm just incredibly shy and ridiculously anxious. It's hard for me to meet new people and make friends.  While determined when I find something I am passionate about (just ask anyone who knew me when I was a certified car seat technician!), I would never consider myself "outgoing". While I wanted to believe Louise, in my heart I knew she could not have been more off base with her prediction.

Right before we left for California I was contacted by a high school senior from the neighboring town. Someone at my church had given her my name to serve as a mentor for her senior class project.  She had decided to do an awareness walk, I had promised to meet with her when we returned and I did.  That's when Andrea (Schnarr, now Wronkiewicz) came into my life.  We spent the next few months planning an awareness and fundraising walk for Fragile X.  That March (2004) the first Walk for Fragile X was held bringing together 150 people and raising $5,500 for Fragile X.  It's a spring time tradition we continue each year, this past April, we just held our 11th walk (and have since added a 5k!)!  Working with Andrea forced me to begin to come out of my shell... just a tiny bit giving lectures on Fragile X to local groups and organizations who would support our efforts.

When July of  2004 rolled around my mom, Colleen, and sister, Dawn, (who also has a son with fragile x) and I flew to Atlanta Georgia for the International Fragile X Conference.  It was my first International Conference and while extremely excited to be there, I was also completely and totally freaked out and overwhelmed.  On our first day as we were taking the escalator up I was scanning through the faces of the people on the escalator next to us going down.  That was when it happened.  I saw Joe!  Yes, Joe Garera and I immediately called out to him.  He waited at the bottom of the escalator with a slightly puzzled look on his face as my mom, sister and I approached him you could see him thinking.  I said, "Joe, right? From Kentucky?"  He said, "Yes" (you could totally see the wheels turning) I said, "My mom and I" and he cut me off and said, "came to our educational event last fall!"  He remembered.  Not only did he remember we were there but that I had 2 children and my sister had a son that was just diagnosed.  He asked about our dad who we had learned passed the gene onto us 3 girls.  We learned that Leslie stayed back at home with Nick while Joe attended the conference during our few minutes of catching up.  During our time at the conference, Joe checked in with us frequently and made several introductions to other families.  When I finally saw Randi, Louise, Marcia, Kerrie and Laura - I was shocked to discover they remembered everything about our family and quickly asked about the kids, including if we followed through with specific recommendations. 10 months had passed since we had seen each other.. yet they remembered.  That made such an impact on me. To this day, each of them remains not only my friend but someone I respect and turn to and will be forever grateful to them for the example they set for me.

This was also the first opportunity for me to meet people I had only known through email thanks to the Emory Listserv (this was WAY before our Facebook days!) including someone who remains one of my dearest friends today... Mary Beth.



About a day into the conference, a passion deep inside came to light and I knew in my heart what I needed to do.  I needed to extend this feeling to every single person I could. I needed other families to know how I felt at this moment.  I needed them to know they were not alone, they were understood and they had it in them to change the world.  I wanted them to know the feeling of this bond between fragile x families.  And I wanted the world to know what Fragile X was.

I've often said that the diagnosis changed me.  It really did redefine who I am and my purpose in life. I understood it clearly in Atlanta, it was my "Aha" moment, if you will.  Everything was clear to me.  The importance of the family connections, the importance of awareness, education, fundraising... all of it (well mostly, it took me until 2006 and my first trip to DC to understand Advocacy!) and it became my mission in life to make a difference.

Fast forward through the St. Louis (2008) conference (where I was asked if someone could have their picture taken with me for the very first time *Talitha, I'll never forget that moment!) , the Detroit (2010) conference (where I may or may not have stood on a table to bring everyone in the bar to one big area and make introductions so we were one big group versus small individual groups. It's also when I met Melissa in person and refused to let her leave my side all week) and the Miami (2012) conference (my first conference as an employee with the NFXF) to where we were last July 2014... Orange County, California.

Over the years I've been able to learn something each time, I've become a little braver and bit more out of my shell each time and I've come a long way.

What I want, every conference, is for every single person to feel like family... because they are.  I want them to know someone knows their name, someone knows their story and if I don't.... I want to learn it.  I want to make connections.  I want to help people meet others. I want them to get the most out of this experience as possible - and that happens when you relax and are surrounded by family and friends.

Just as people have watched Parker and Allison grow up over the years, I've watched thousands of children grow up too thanks to social media. It's often a bit of a shock value to some when I pull together 15 - 20 people in the restaurant or bar and introduce them all to each other. It's important to me to remember something about everyone; where they are from, how many children, something - a detail to share to start a conversation to make it a little bit easier. It's important to me because every person I meet, even if just on Facebook, is important to me.  Our lives, while filled with a million amazing and happy moments, are also difficult.  I get that, man do I ever get that.  I understand the anxiety we live with each day, the shyness and how that can come across.  I get it. I live it.  I understand.

I know, because of my first international conference experience, the difference it makes when someone knows who you are.  That is my goal, to help you know how important you are to me and our community.  To help you have the best experience possible and make all of the connections you would like to make... and then more.

All week long the same thing goes through my very busy mind.  The theme song to Cheers...and not only because our conferences *may* be known for closing down the bar a night or two or three...but because - these lyrics, these words ...

are so incredibly relevant to our lives and to the personal mission I have.  It's not my job, it's a mission within my heart that I've had since 2004.  So whether I see you across the lobby, in the elevator or while we are eating, or I see on Facebook that you are arriving at 1 am and I stay up to meet you so you feel welcomed - I want to say "hi" I want you to know somebody does know your name - because you are important to me and to our community.... our troubles are all the same... I want to be sure everybody knows your name.

I know how intimidating it is to come to the conference, especially the first one, I know how you want to escape to your room and just get away.  I also know that, if given the opportunity, a conversation can change all of that and bring you back.  It's why I will always do my best to say hello and initiate that conversation.  Now and then, ok once but I'll never forget it, I may not recognize someone - odds are it's someone I know well and I'll never live it down (*disclaimer, please do not hold it against me if I do not recognize you after you leave the gym or pool!)  but we'll laugh about it for years ;-)

We are in this together.  I've made the most amazing, life-long friends during this journey both professionally and personally, I've taken the knowledge I've learned and shared it with anyone who will listen, I've worked to empower families and from my heart, without significant effort but with tremendous passion - I've connected families from all over the world.  It's amazing enough to get to do it through emails or social media, but there is no comparison to the feeling of making those connections in person.

I am that person who will stop in the hall (or ask you to walk with me) and not only listen but want to hear what is going on to see how I can help.  Those conversations often prevent me from attending many sessions, which is where my conference experience differs from most, but impact my life in the most wonderful way.

It's the hugs, the words "thank you", the tears of appreciation that make every second worth it and the reason I won't ever change this about myself.  While it makes goodbyes  "until next times"  harder, it makes the time together more valuable.

Sometimes... it even leads to getting a cape (undoubtedly the most thoughtful people I have ever met live the Fragile X Way!) which is seriously, pretty incredible too :-)






I never imagined myself where I am today and while I've made mistakes, I've learned from them and grown tremendously.  When we say "it takes a village" it's not just for our children - it's for us adults too.  We have the most spectacular village out there, I want to be sure each of you realize you are a very important member of it.  You, like me, are someone special.  You make a difference to me and to others.  Together, we take our lights that shine and brighten this world.

Monday, August 18, 2014

The power of routine - and electricity!

Ahh... routine.  From the outside looking in, it may not appear that we have one, yet we do. Not only do we have one, we depend on it like oxygen to breathe some days.

We understand that change happens in our routine but it usually comes with explanation and understanding. When it doesn't, it's a quick reminder of how different our lives are as we can't easily just go with the flow of what life throws at us.  Today was a beautiful example of that.

And by "beautiful" I mean the "slap in the face obnoxious reality" that is our life.

Today was the first day of school.  Allison was the first awake (slight concern on my part that it indicated the end of the world but turns out she was just excited) and nicely woke up myself and Parker.  We had a wonderful, quiet breakfast (minus the cats fighting), were dressed and ready 20 minutes early.  If only every morning went this well... I'd totally toss my name in for the Mother of the Year award!

Drop offs went pretty smoothly and  I quickly settled into my work day.  After adjusting to the extreme quiet in my house, I was able to easily focus on work with only the occasional twinge of worry about the kids.  I knew if I was needed my phone would light up, there would be no hesitation - the staff would reach out to me.

There was an early 2:15 dismissal today for the first day, which - is fine.  It's the after school routine that is critical, especially today.  Today starts off as a reminder of what to expect from now until the end of May (or mid - June depending on our snowfall!).  Today was the reminder that while we are making the big shift back to school, we will easily slide right back into our after school routine.  The same routine we have done for EVER.  It's consistent.  It's reassuring.  It's decompressing.  It's important.  Especially today.  Today is the first day which means it sets the course for the entire year.  Today going great and reminding Parker that he can depend on our routine during the new changes to his life - priceless.

So, no,  I was not happy when at a little after 2 the power went out.  I did, what seemed natural to me, I quickly logged onto the website to be sure my bill was paid.  It was, it turns out the entire town was without power... including the schools.  Not the best way to finish up the first day but - survivable - I just needed the power to come back on before I finished picking up the kids.

I knew the odds of that were slim so I began to prepare Parker as soon as I picked him up.  I let him know that at home, just like at school, we did not have power.  On the drive to get Allison I reminded him that no power meant no lights AND no TV.  We told Allison after we picked her up so she would be prepared as well.  What I didn't think of was exactly how much of our home depended on electricity that impacted Parker's after school routine.

When Parker comes home he:
1. Turns on his inflatables.
2. Turns on the TV
3. Scans the recorded program list from the day to be sure nothing was missed.
4. Has a super crunchy snack while watching his shows and unwinds from the day.

We don't talk during this time.  It's his time to unwind.  I go back to work, Allison has her own routine.  This works amazingly for us.

So, here is the importance of Power in our lives... our entire routine depends on it.
If Parker can't do step 1, he'll attempt step 2.
If he can't do step 1 or 2 he'll obsess on it until it happens - or we pass out from exhaustion, whichever comes first.
We never make it to 4 which is the most critical step.  While a crunchy snack may sound like not a big deal - when you are 15 and in sensory overload needing to decompress from your day -- a crunchy snack is essential to regulating your body back down to calm.

While I prepared Parker for no TV and no lights, I never thought about the inflatables.  My heart sank when we walked in and he immediately tried to plug them in. He was very upset that they would not work.  A tear or two streamed down his face while he said, "Come on, buddies, you can do it... get up already" ... but, no luck.

I tried to explain they could not work without power.  Something Parker would understand if  there was a thunderstorm or bad snow storm but for a perfectly beautiful sunny day to have no power - and for him to come home to that, not be here when it went out... he couldn't wrap his mind around that.

After 20 minutes and multiple outlet attempts he moved onto the TV.  He knew the TV channels wouldn't work but didn't understand why he couldn't watch a DVD like we do when we lose our satellite in a storm.  When he finally accepted he couldn't watch it on the TV there was a whole different explanation as to why I couldn't eject the DVD for him to watch on the laptop. That went exhaustingly well...

By now I had messaged my boss, extending my lunch hour, knowing we were paralyzed until I could help him find something that would work.  We had options... lots of them.  Options that he loves.  It's just that none of them are part of our routine.  So, in the world of Fragile X... they really aren't options at all.

He didn't want to swim.  He didn't want to play anything on his iPad.  He didn't want to watch Netflix.  He didn't want to go to the park, for a drive or anywhere. He didn't want to lay down or snuggle or even have a tickle war.  He didn't want to play Uno. He didn't want to go through his backpack.  It wasn't time.  He wanted - and more importantly - his body needed - his routine. 

Without steps 1 & 2, I couldn't get him to step 4 and he really needed step 4.  His body and his mind needed step 4 to get us onto the rest of our evening routine that would include going through his backpack, talking about his day and planning for tomorrow.  I couldn't jump ahead in our routine either or change the positions of each thing, especially with no idea how long we'd be without power.  I couldn't afford to make promises I couldn't keep at this moment. (or really ever).

While I was working through this with him, Allison had taken my suggestion to do her home work early just in case we were living by candlelight this evening.  For Allison, this change in routine was easy.  She understood what was going on and quickly sat down to begin her homework while I worked with her brother.

As I was trying to get Parker interested in one of his iPad games (aka, I was buying him tokens), I was glancing through my emails from work when I noticed a notification from Facebook that I had an email.  Not expecting anything out of the ordinary, I switch over and opened what would take me from the quiet sing songy mom who was helping her son to the mom who felt judged, alone and outraged.

I had posted on Facebook that I really needed the power to come back on before I got my little guy home.  Nothing horribly whiny just a bit of frustration knowing what this change of routine would do to him.  I wasn't alone.  I saw many people post about their frustration.  And a handful of people suggesting people stop complaining and start interacting with their kids - taking advantage of this time together. I was really indifferent to any of the posts until this email came through which read:

"Hi Holly, 

I noticed your status update about no power.  Here's a thought, try talking to Parker and Allison and spending time with them instead of putting them in front of the TV.  You might learn something about their day."

There are times I feel the need to justify my children's disabilities, explain and most of all educate.  I do this frequently.  I am really adamant  about raising awareness and people understanding Fragile X and how it affects my children.  And then there are times I have learned to stop and walk away - that does not come naturally for me.  It's definitely a learned behavior ;-)   This was one of those stop, bite tongue and walk away times.

While it frustrates me to no end that someone would find sending an email like this appropriate I also know that their mind is made up.  They believe they understand and can easily solve whatever has come my way.  Then there is the reality that is our life.

The reality that something this huge sends my son into a tail spin.  The reality that I am focusing all of my energy on helping him through this so that he keeps control of his body because the last thing I want is more bruises.  The last thing HE wants is to physically lash out.  This takes all WE have to keep things happy and moving forward and working through the change.  Because we are not a normal family.  Change is exceptionally hard on Parker.  Especially change he doesn't understand.  THAT is our normal.

You may not understand our routine but that doesn't mean that it isn't the right routine for us. If you think that I don't talk to or spend time with my children... well that's just laughable :-)  It honestly doesn't need anything more than my laughter.  Laughter is good so I thank you for that opportunity to really laugh today.

More importantly, I'd just like to send a friendly reminder that what is not a big deal to some is excruciatingly difficult to others. It takes everything Parker has to hold himself together and make it through the long school day.  When he comes home his mind and body get a break.  They need a break.  After they've had it, we move on and do many of the things "normal" families probably do too.

It's not always easy being the "different" family yet, honestly, this is the only life we know so it's easy for me to forget how different we are.  I understand, I see things each day that remind me of how different our lives are.  Sometimes it doesn't bother me, sometimes it's crushing.  Either way - I'm yet to meet anyone who has a child with a disability who needs a reminder, no matter how "well intended" that their lives are so drastically different.  Sometimes this will come with frustration... sometimes, I will put out a plea for the power to be restored before our routine is disrupted.  I am, honestly, human after all.  When I (or others do) instead of questioning our parenting trust that there might just be more to the plea than you are aware of.

Just - support each other.  Suggestions are great and often helpful - and different from the "advice" I was given.  Not every detail needs to be given for that to happen.  Embrace that sometimes frustration happens and instead of offering "advice" maybe just let them know you feel for them or hope with them for the situation to change.  So much more can happen with a positive response than a negative one.

By the way... as soon as the power came back on - so did Parker's smile... and inflatables.  THIS is the power of routine - and electricity. 



Sometimes I enjoy the differences in my home :-)

Sunday, August 17, 2014

Back to whaaaaaaaaaaaat? Already? School.

Deep breath in... and exhale.

Ready or not - here we go, again.

Back to school.

New shoes are laced up, new back packs are filled with new pencils, paper and supplies, new gym clothes are washed and ready, new clothes are laid out.. in every sense of the word we are ready.

The kids are beyond excited, Parker is ready to return to the routine of the school day and Allison loves school plus has her BFF is 7 out of 10 of her classes each day.  There is an excitement between them to start their 10th and 6th grade school years.

As their mom, I have my "this is going to be awesome" routine down.  It's my job and, God knows, it's my wish that this be the most awesome year to date.  I've done all I can to start it off that way.

Raising children with special needs takes a little bit away from the go with the flow.  There has been planning, outreach and IEP re-writes since last Spring and over the last couple of weeks to ensure this year is ready and better than the last.  All I can do now is hold my breath... and pray.  Pray that the planning has paid off.  Pray that each year that has led up to this one will have made a difference.  Pray that this will be a wonderful school year.

You see I'm not that mom counting down the hours until I can send my kids to school.  I like having them here. I like knowing they are safe. I like knowing they are happy. I like knowing I can keep them protected and smothered in love.  I'd keep them here every day forever if I could.  (Minus the days I could send them to Grandma and Grandpa's house because let's face it - my sanity is important too!).

The start of each new school year is intimidating for everyone, I am sure.  It's a little more intimidating to special needs parents.  You send your kids to school with new crayons and paper... we send our kids with detailed Positive Student Profile's and binders of "how to's" for our teams.  Yes teams.  Your child has a teacher, our children each have their own team.  A team of teachers, parapros, therapists, administrators, advocates... basically everyone and them some to cover all the basis.  And we meet on a regular basis to come together to help create a path for each child.

I'm fortunate that for Parker, who is now going to be a SOPHOMORE (insert me hyperventilating here) that his team will be consistent from now until graduation.  For Allison it will continue to grow and change - but, her needs are extremely minimal so there is less pressure there to educate the team to the degree I do for Parker. That doesn't mean I worry or prepare less for her though either.

School is scary.  While Parker has a para pro (one on one aid) with him throughout his day, there is that part of me that still worries - the "what if's" of the day.  Here's the thing...despite Parker's increased and improving language, there is still so much he simply cannot tell me.  It takes a boatload of trust in the world to ever let him out of my sight.  I have to, he needs it for his independence.  He's 15 and one day will be on his own.  I have to let him out of my sight.  That does not, for a single second, make it easy.  Each time the phone rings, my heart stands still in fear that something has happened to him.  I worry about him being bullied.  I worry about him not having friends.  I worry about making the right decisions for him - because those are on me.  Picking his classes, lining up events, picking out clothes... so many details of Parker's life is all on me.  No pressure there at all.

The truth is Parker thrives at school.  He loves being at the high school, he has a phenomenal team.  He's had the very best teachers, para pros and therapists  working with him over the years to get him to where he is now - and that's a pretty good place.  It doesn't remove an ounce of my worry.

Allison struggled last year with her transition to Middle School.  Her circle of friends was split up she was very much alone.  Her anxiety rose to new levels and, for the first time, she struggled both socially and academically.  It was not her best year - or even close.  She finished the year off beautifully, pulling her grades up to all A's and B's and quickly jetted off for 10 days of horse back riding at the end of the school year to find her balance again in life.

While she's more than ready to take on 6th grade with her BFF by her side, her anxiety continues to show itself in new situations and more openly.  Her fist clenching by her face with slightly flapping hands has become a part of our every day as we lead up to school starting.  It's a reaction beyond her control and coping mechanism for her.  While her friends get it, others do not and it caused a lot of tears last year as she was made fun of for it.

Her body is growing faster than we can keep up with, standing at 5'2 she is in few ways my baby girl but very much a beautiful young lady.  It's hard to believe at 12 she is so grown up ... that will bring it's own challenges.

I'm just not ready.  I wasn't ready when they started kindergarten and I'm not ready now.  Time goes too fast.  I'm happy with the late nights with Allison and early mornings with Parker.  I'm happy with going back to bed until I have to go to work without hustling to get everyone fed, dressed and dropped off.  I'm happy with friends coming to swim and play where I know everything is good.  I'm happy.

Sigh.

I'm also still going to send them back.  I'm extremely thankful for so many amazing teacher, parapros and therapists who work so closely with my children.  I am thankful for their friends and for their friends' families who love them as their own.  I am thankful... and I guess ready to get this school year started.  Mostly because I don't have any other choice ;-)

Wishing everyone the most wonderful school year ever!








Tuesday, August 12, 2014

Please keep talking to my son

Earlier this week Parker and I were in the grocery store checking out.  The young cashier told him she liked his Teenage Mutant Ninja Turtle (TMNT) shirt.  Parker responded by kicking me in the shin.

I reminded him to say "Thank You" ... three times.  He finally mumbled "Thanks".  I took it.

As she continued to scan our groceries she said, "Have you seen the movie?"  Out of nowhere a strong 15 year old hand smacked the back of my head.  I think it hurt the cashier more than me when it happened.

I simply said, "Use your words.  Have you seen the movie?"  He replied, "No."  I reminded him that was not true.  He had just seen the movie a couple days prior.  He sheepishly said, "Yes".

Without initially thinking twice the cashier said, without skipping a beat, "did you like it?"  This time I noticed she winced a little as soon as she said it with the panicked look of "why can't I stop talking?" across her face. I did my best to reassure her with my smile while I pleaded in my mind "Please... keep talking to my son."  We both waited and then it happened, a full body shove that almost knocked me over "GO MOM" said the clearly stressed voice of my son.

Without looking at him, only in his direction I calmly said, "We're not done here. You need to be patient and use your words. Did you like the movie?"  He grumbled, "no."  I said, "That is not true at all.  Parker Roos, did you like the Teenage Mutant Ninja Turtle movie?"  "Yes" he replied with a deep sigh as our groceries were all placed back into our cart.

There was a look of relief on the young girl's face.  You could see she wanted to carry on a conversation but also was concerned for me.  Understandable so as Parker towers over me these days.  However, I need for her to have these conversations, they are so important in my son's development.  Because of that we stood paused as I said, "Parker, say goodbye, please" and waited - not knowing if there would be a physical response or a verbal one.  It was, again, physical as he reached over and pinched my arm.  I quietly responded, "Parker, please say goodbye"  "Bye" he said under his breath but loud enough to be heard.

"Thank you for using your words, I like that!" I responded.  The cashier and bagger both said goodbye, I quickly said, "Thank you" to both of them as Parker and I started to walk out of the store.  Within our first 3 steps we were already reviewing what to do.  It's an important routine for us.

"Parker, when someone says "Hi" to you, what do you say?"
"Hi"
"Do we hit when we say hi?"
"No, use my words"
Nice hands?
"Nice hands."
"What would Grandpa do if someone told him hi?"
"Say Hi"
What would Grandpa do with his hands?
"Give hugs."
I need Parker to be like Grandpa, nice hands, nice words.

Reminders.  We go through them daily.  Before we enter the store and after.  It's not just at the store. It's every single time we leave the house.

The past couple of weeks have been our roughest of the summer.  I was gone for a conference and school is quickly approaching.  While he loves school and is more than ready to return, there is the anxiety of the new routine and returning to school too. It's made our recent outings a bit more difficult but an incredible reflection of where we used to be and where we easily will be again without interaction from others.

The most common thing I hear from people when they try to talk to Parker and he physically lashes out at me in response is "I'm sorry, I should not have said anything to him."  Noooooooooo.  That could not be further from the truth.

Do I want to get hit/kicked/pinched/shoved?  Gracious, NO. 
Do I want my son to learn how to have basic greetings and conversations while in public that casual and not scripted?  YES.  That is life.  Yours.  Mine.  And it needs to be his.

That is only going to happen if you keep talking to my son.

The only way I can help him is for you to help me.  I need you to keep talking to my son.  I know that when he's struggling, like he is now, this isn't easy.  I understand that is because you are concerned for me. Please let me help you through this so, together, we can help Parker.

I need you to know that I am always anticipating the worst.  I have to, it's sort of my survival mode.  That said, there is a difference between anticipating the worst and expecting it (in the mind of Holly).  I don't "expect" it to happen, odds are it won't - at least not the worst case scenario - however I need to "anticipate" it and be prepared.  That's crucial. 

When we leave the house we talk about how we might run into someone he knows who might want to say hi and what we will do.  We talk about how we might run into someone that mommy knows and they might want to talk to just me and what we will do.  We talk about how we might run into someone who just knows and wants to talk to Allison and what we will do.

And we practice.  Every time we leave the house.  Every time.

I know that each time I see someone it's a 50/50 shot either he will hang his head and reply with his words or he will physically reply in an attempt to escape the situation.  I am ready for that.  This isn't new, this has been our life for as long as I can remember.  That said -we've made HUGE progress.  Right now, we are in a moment of setback and we need to increase Parker's interactions to get us back to where we were.  I need you to talk to my son when you see him.

As much as I anticipate the physical reaction and the worst case scenario - I also expect Parker to show me how far he has come.  I expect him to respond positively.  I expect him to work through it when he doesn't.  It's not an option, it's a life skill he has to master.

When he does well, I am the first to praise him.  Those moments are my favorite and I need more of them - which means I need you to talk to him.

Here are my tips to talking to Parker.
1. Always say Hi.  Always.
2. Keep it brief.  Pick 1 question, maybe 2 for him to answer.  "How are you?"  "Are you ready for school?"
3. Always say Goodbye.  Always.
4. Give me time to work him through a response.  If he doesn't respond verbally, give me the opportunity to help him find that answer.
5. Compliment his words.  "It was nice to hear your words today"  "Thank you for talking to me"

Parker can communicate with me.  That's easy.  He loves his Momma more than anyone, I'm easy for him to talk to.  His anxiety comes into play when we are out and about.  This is a life skill that is important for him to master.  So please... keep talking to my son.

I know sometimes it's hard.  I know that you don't want to see him react to me.  I can only change that behavior by repeating it and replacing it with an appropriate one.  That's going to take your help.

So please, when you see us at the store, the doctor's office, or out and about take a moment to say "Hi Parker"  even if nothing more is said... that "Hi Parker" is a tremendous example of a greeting for him to model.

He'll get it... I promise.  And when he does, it'll be crucial that you continue to keep talking to my son


Monday, August 11, 2014

When depression wins.

I've written on depression more times than I can count yet I only recall briefly sharing about it once.  There is an incredible fear within me over discussing my depression, one that stops me from clicking “publish” and instead keeping the writing tucked away.  I imagine I am not alone in my fear of being open about the role depression plays in my life.

Today our world lost an incredible soul, the talented Robin Williams.  Sadly, I am positive that today the world lost many other incredible souls who’s names we may never know  to what may have been the same cause.  Initial reports indicate the death of Robin Williams to be suicide due to asphyxia .  While my Social Media feeds flood with respect and condolences, they also flood with confusion to some and understanding by others as to why.   Unfortunately, I fall on the side of understanding.

Two quotes keep catching my eye…




The 2nd brings me to my laptop tonight to write, to share, to pray that my words might help someone feel a little less alone in the struggles they face every day, more importantly to reach out for help that they may need.



The anxiety that is running through my veins right now over putting this out for the world is overshadowed by my need to help others.  It’s sometimes that desire to help that buries me too.  Life is tricky that way… you’re going to have to bear with me as I unravel this thread. While I always thought keeping this thread wound tightly and close to me was best, my heartache from this news tells me otherwise.

I never knew Robin Williams personally.  I never had the honor of meeting him or even seeing him perform live, yet I feel like I've lost a close friend.  Some people naturally have that impact on the world, he was certainly one.  In a way, I feel like I owe this to him… to you… because something has to change in our world.  My friend, Tim, may have said it best.


It's time, as a nation we stop the stigma and start the help.  It's time.  We've lost too many.  We've suppressed feelings way too long.  It's time we focus on helping those who need  it without consequence or judgement. 
Depression, in my life, is a tricky demon – one that I will likely forever battle.  I refused to acknowledge it for years.  Very, very few (ok, one – well, two) know the depth of it.  It wasn't until a couple of years ago that I realized the depth of it.

I am often described as “one of the happiest people” and it’s true – sometimes, I am.

I thrive on helping others.  I would lay down and cover a puddle with my body so you didn't have to walk through it if that was what it took to make your day better.  Helping people, bringing people together, listening, offering advice, getting people to a better place, motivating, attempting to inspire… those things fill my heart with such peace and contentment it’s hard for me to describe.  Part of me is exactly as happy as I appear - all the time.  I can’t help it.  I love, more than anything, making other people happy.  I am a giver by nature.  I tend to carry the weight of the world on my shoulders in attempts to make everyone happy and keep the peace.  Not exactly the face of depression… yet it is, exactly the face of depression.

Depression isn't always visible. It doesn't always stop us in our tracks or leave us in bed. There is a misconception as to what it looks like, the efforts people people take to mask it and get through each day.  Often we continue on fighting with all of our strength to continue to do good, help others… make people laugh.  The vast majority of people I know who openly struggle with depression are the people who are trying so hard to change our world and make it a better place.  Maybe it’s who we are, what we are born to do… and maybe it’s our glimmer of hope that if we can make the world a better place the demons we fight won’t survive the good we have created.

I don’t know.  I only know I have to keep trying.

Years ago I was shocked to learn from my dear friend, Dan who I've worked with many comedy club fundraisers on, that many comedians struggle with depression.  It didn't make sense to me.  How could people who are clearly so talented and bring so much laughter to others be so sad? The realization was eventually clear; they can the same way I do. 

It’s a difficult burden to carry inside especially when you live your life in a public way.  There are high set expectations – even for me.  I’ll always be here, I’ll always have an answer, I’ll always make time for you… and I do.  I do because I don’t ever want anyone to feel alone.  I know how that feels, I don’t wish it upon anyone and I do all I can to make other’s lives better. I also need that for me. I need to be able to help you as a way to help me. We all need to be needed.

I think that is one of the many common misconceptions with depression that you will know by looking at us or talking to us that we are struggling.  The truth is, that’s not likely.  We live behind guarded walls, letting few in and even fewer really inside the protective compound we have created. To the rest of the world, we are just fine.  We get up, go to work and sometimes even make the world a brighter place.  We do that with our demons tucked inside.  We spend so much time caring for others we forget how to let others care for us.  We also fear the judgment and consequences of sharing our struggles.

When I hit my lowest, I reached out to my best friend who encouraged shoved me into seeing a doctor. It took 2 before I began to open up and find a professional I trusted.  Even at my lowest, I knew there had to be a line to my weakness. My children are the reason I breathe every single day.  They are the reason I smile, the reason I laugh, the reason I fight for this world to be a better place.  They are my everything.  They are the reason I have a line, the reason I will always be right here, in person. I owe the 3 of them (my children and my BFF) everything I have as a Thank you for never giving up on me and always being there, I am forever grateful for them and I do my best to tell them daily the importance they have in my life.

I was asked early on  “Would you ever hurt yourself?”  Well, no.  Of course I would never hurt myself.  I don’t like pain, I see it as pointless, no… I’m not going to hurt myself.  I also knew that wasn't what they were asking.  It was the answer I knew I needed them to hear. 

During a later visit I said, “In all honesty, the answer is no.  I would not hurt myself.  That said, I don’t see suicide as hurting myself.  It’s in it’s own category.”  I will never forget the look on my doctor’s face.  It was the moment they realized what only my BFF knew.

Have I thought of suicide?  Yes.  I have thought of every single reason it seems as though it is the most logical answer to every problem I face, to every demon that haunts me, to every moment (and there are many of them) I feel as though I only fail. I know how it feels to sink, to feel as though I'll never surface and to gasp for each breath.  I know.

For me, it’s only a thought that will forever be outweighed and dimmed by the 2 loves I tuck in and kiss goodnight each night.  To the ones I brought into this world to love and protect – to my BFF, my parents, my family, my friends...  they complete me in an unexplained way.  

I've seen what suicide does to those left behind, I would never do that to them. I could never do that to them.  Instead, I fight the demons inside of me. I have learned, thanks to my BFF and amazing team, to reach out for help when I start to sink and just as importantly, recognize when I am sinking.

I limit who I am close to and who I trust.  I am careful to surround myself with people who have incredible strength and positive outlook.  Their energy helps the positive thoughts in my mind flow when the tears want to fall.  More importantly, they believe in me.  I need that too. 

Depression is dangerous, it needs to be recognized, treated and understood.  People need to see they can be both depressed and amazingly good at the same time. Then they need to tip the scale so the amazingly good outweighs the depression. It's often hard to do that without help and support.
           
I can be extremely good at what I do, both professionally and as a mom, love my life and still be stuck with this demon trapped inside of me.  Some of the most amazing, help anyone, positive people I know… are also struggling to fight the demon of depression that lives within each of them. 

I would like to believe that I am one that is winning the struggle but,  (which is why I am writing tonight), some days it’s a vicious tug of war and it takes my entire team that anchors me to not only win but to get out of bed and start new the next day.

It’s not something you choose.  Depression isn't a choice.  It’s not something you “just get over” and move on from, it’s a draining part of your daily existence.   I cannot even begin to express the importance of reaching out for help.  I understand the fear in doing so.  I do.  I also understand the difference having someone to talk to, the right medications and a clear path makes in silencing the demons so you can not only function but thrive.

You’re not alone.  Please understand you are not alone and there is someone there who can help you. Your work, my work, our time here... it's not done.  We have so much more wonderful, positive things to accomplish... and we will.  We can do this.

If you are not struggling, if you do not understand those who do... please - stop and think of the people in your life.  Do they realize their importance?  Their value?  Do you?  The next moment is never guaranteed. Make that phone call, send that text or email and let those in your life know how important they are to you. Send flowers, stop by unannounced, make time for lunch, a walk together or a late night phone call.   Never stop telling them those you love how much they are loved and the importance of who they are.  You never know when it will be the one thing that made all of the difference in the world… and you may be surprised with who really needs to hear it.


If you or someone you know needs help, 


please call the National Suicide Prevention 

Lifeline at 1-800-273-TALK (8255).


RIP Robin Williams.  Thank you for the gift you were to us.  May you find peace, laughter and be comforted in a way you longed for. May you find peace. My thoughts and prayers are with your family, friends and our world as we find our place without you here in our lives and appreciate the memories forever captured for us to hold onto.