Wednesday, January 28, 2015

Discussions with my daughter... I'm sorry...again.

My sweet, beautiful girl... once again, I am sorry.

I want to blame this on anyone and everyone but you know me better than that. I don't believe in blame, I believe in accepting my faults.  While there could be a hundred reasons, the bottom line is I should have asked questions, I should have been thorough, I should have known exactly what I was walking into... and I didn't.  Like many other things, this too I will learn from.

In so many ways you have grown up too fast.  I know all parents say that but with you, it's different. It's not just that time flies by, it's that you didn't have any other option.  While you were born 3 1/2 years later, you were born the "little big sister".

Disappointment is not new to you.  Despite your own struggles with Fragile X (which, yes, I do recognize and do my best to help you through), your brother's struggles are significant and typically trump everything.  Tonight was no exception.

What I am not sure that you realize is how much it hurts me.  I try not to let it show, not because I want to hide anything from you but because you are so very much like me.  We wear our hearts on our sleeves.  When we see someone bleed, the pain cuts us even deeper. I try to find that balance between letting you know I'm disappointed but not letting you see the pain.

I thought I had everything worked perfectly out. Going on what was written in front of me, I did.  The first volleyball game of the year was while I was in Colorado. There are too many girls on your team to play each game so I asked your coach for you to be one to sit out the first game.  The paper says that if you sit out one game you will play the next.  The calendar was showing 1 game for tonight at 6:30.  We needed to arrive at 5:30 for the group picture (the group picture that your coach amazingly was having re-taken because you were late for the first one due to your brother having a meltdown while I was out of state.  Your coach kinda rocks ;-)  you already knew that).  I've reviewed our plans for tonight with your brother just the right amount of times.  It was good for us to arrive early, he didn't have to walk through a crowd to find a seat, he had time to settle in.  Everything was going perfectly, according to my plan.

My plan, which I soon learned, was not exactly accurate. You had told me, likely more than once, that there would be 2 games tonight. I heard you, I swear I did... I failed at writing it down or worse yet actually letting what that meant sink in so I could better plan.  Instead my mind was focused on the fact that you didn't play the previous game so you would play the first one tonight... not because that's what your coach said but because that is how my mind processes.  When you came across the gym to let me know you would be playing the 2nd game, my heart sank.  Seriously, sank.

Every bit of me knew that I was already pushing your brother's limits with the 6:30 game. Especially after arriving at 5:30.  He should get his meds at 6:30.... we wouldn't be home until 7:30, he's typically in his room laying down watching tv by then.  Knowing the game you would be playing in wouldn't start until around 7:30 brought tears to my eyes that I didn't do the best at fighting back.

I was so angry. I need to be able to plan. I need to be able to prepare your brother. I need to be there for you.  Not because you need  for me to be, although I'd really love to believe that, but because you are my girl - I need to be there for you because I want to be.  I don't want to miss a thing and too often I'm pulled away.  I do my best not to let that happen.

Your coach came over, I let her know that we'd never make it to the 2nd game. I wouldn't get to see you play. I didn't realize there were 2 games.  Even if you telling me had sunk in, my silly - crazy thought process still would have believed you were playing the first game.  Honestly, that does not make sense - sometimes my mind doesn't.

As my heart sank, I wiped away tears while trying to keep your brother engaged in watching the warm ups.  My mind raced as I went through every possible option I had to make this work.  It wouldn't matter.  The reality was it's a school night, his body is dependent on his medicine and his schedule. 7:30 is entirely too far into our evening for him, pushing his meds back til after 8:30 would never work.  Him leaving with someone else would never happen, we both know how attached he is to my hip.

As I tried to accept what would be for the evening and debate with myself how far I would push your brother to stay with a growing crowd your coach walked back over to me.  She told me she was going to put you in for a couple minutes of the first match so I could see you play.  (I told you, she rocks) while it wasn't what I wanted (I wanted to see you play your entire game) it was exactly what I needed and I was (and still am) very grateful. I was able to watch you serve and score a point for your team. I beamed with pride... I'm still beaming.

During the rest of the game, I text friends who were there to find a way home for you.  Your brother was antsy and begging to go.  As soon as the ride was secured, the first game ended and your brother - as predicted - was ready to bolt.

It broke my heart to leave the gym and miss your game. If only I had followed through with what you told me about 2 games tonight, I would have talked to your coach and understood the details and what to expect. I could have dropped you off for pictures and come back (and fingers crossed made it inside the gym) with Parker to watch you play. In all fairness to my mind, that could have failed too - we both know it.  None the less, I will get more details before the next game and be able to better prepare your brother.  Your brother, who - by the way, did a magnificent job of modeling the ref :-)  You would have been amused!

I honestly thought life would be easier. I never imagined at 41 I'd have a 15 year old who would require as much attention as your brother does. As difficult at nights like this can be, I can't imagine life any other way.

I am so very sorry, again, that I let you down.  I am sorry that I watched your game through pictures that other parents posted and updates I was given. I am sorry that I didn't follow up on the details of "2 games" when you told me. I am sorry that I forget that the entire world does not live with the importance of "the schedule" like we do. I am sorry that your brother has Fragile X and has put you in the position of being the little big sister, that you have had to learn to not be able to do everything you may want because it's too much for him to handle, or to leave early, or to walk away from a meltdown while I work him through it.  I know it's not easy. It's not easy to be the little big sister ever.  It's even more difficult when you have Fragile X too and your own set of needs. I wish life was easier while still providing us with the lessons we have learned on this journey thanks to Fragile X.

Thank you, Beth Wells Landry, for the amazing pictures!

Thank you, Beth Wells Landry, for the amazing pictures!

Thank you Beth Wells Landry for the amazing pictures!

I wish I could promise you that I won't miss another thing, that I'll follow up better and plan better - but the reality is, I am human. I will certainly try and do my very best - that I can promise.  I know sometimes even my best will mean things don't go as planned and there will be more I miss out on.  I am incredibly proud of you for finding your place without me physically by your side 24/7.  I pray you know that a part of me is always by your side, always.  I'm always there with you, always proud, always smiling, always with you... even when I'm home putting your brother to bed while you are at the school, on the court about to serve the ball across the net to score another point.

I am sorry I could not stay, while I know you understand - I also know you hide your pain.  You are my child, we are two peas in a pod. I can feel the disappointment.  Sometimes, all I can do is relive the moments as you tell me about them over a Reese's after you get home and remind you how proud I am.

I love you so much.  I'll always keep the Reese's stocked... just in case.

Saturday, January 10, 2015

Time heals...or at least redefines. Working through loss.

They say time heals but I wonder sometimes if it actually heals or simply changes who we are, redefining us giving the illusion of healing while masking the pain we carry.

In September of 2013, a beautiful, bright eyed boy with an incredible smile named Aiden Sullivan went to sleep one night like he had many before only this time, he didn't wake up the next morning.  Like my children, Aiden had Fragile X Syndrome.  His death was quietly mourned by the few who knew him within our Fragile X community and the incredible family that he left behind.  I think of him each night as I tuck my children in bed and kiss their foreheads good night. His parents, especially his mom, crosses my mind as I fight back a tear of guilt that I have this incredible privilege that has been taken from her and heartache knowing she would give anything to kiss her sweet boy and tuck him into bed tonight too.  While I never met Aiden or his family, they forever touched my heart and impacted who I am today. They are always in my prayers.

As I had just come to grips with the loss of Aiden, our Fragile X community was rocked to it's core a few months later, shortly into the new year of 2014 when one cold January morning the news of a house fire in Georgia quickly spread through our community.

Today marks the one year anniversary of the passing of passing of Logan Davenport, this day has weighed heavily on my mind and my heart all day long. Logan also had Fragile X Syndrome.

There is never a day that goes by that I don't think of Logan when I see my children or hear of an experience of another Fragile X family that is similar to one he had faced. While I had never met Logan in person, like many in our Fragile X Community, I have watched him grow up online. I had met his parents and through pictures, experiences and stories shared by his mom, Sheree, his dad, Mickey or his grandma Mickey - our entire community watched him grow up... just as they continue to do with my children.

His mom, Sheree, has always been a voice in our community.  A loud, strong voice with an incredible southern drawl to it - she is after all, a Georgia Peach!  She and Mickey were incredible advocates for Logan. Sheree fought tirelessly for an end to restraints and seclusion for special needs students. Both could be found at the NFXF Advocacy Day in Washington DC, speaking out on behalf of their son and others who needed a voice.

There was never a shortage of stories about Logan or his beautiful sister, Leah.  Leah, a beautiful young lady who loved her brother unconditionally and was often seen in pictures with her arms wrapped around him with smiles beaming from them both.

I know that his family, too, would give anything to have him back in their arms.

I thought that today would be simple for me to acknowledge. To let his family know, just like with Aiden, we will never forget the incredible boy that was taken too soon. It turns out, it hasn't been that simple at all.  To  say something reminds me of how real it is to each of us every day, the pain that continues to live on.

Over the past year, we've continued to acknowledge and share in the memories of both boys on their birthdays.  For Logan, who was very well known in our community, many have changed their profile pictures to honor him today.

I know my heartache pales in comparison to  what their parents and family members go through each day.  And it should.  This isn't about me, it's about 2 families who must continue to go on each day with a significant part of them missing. I can't imagine that pain and pray I never, ever find out. I know the pain as a friend and it cuts deep and hurts unbelievably.

I believe for both boys the one thing I can do is promise their families again that they will never be forgotten, that their spirit lives on in our children, that time is taken every day to appreciate those foreheads we get to kiss goodnight and to hold our children a little tighter, say I love you a few extra times and to always keep their family in our prayers.

Their families will forever be a part of our Fragile X Community.  A community that was forever changed by the loss of both boys.  A community that will never forget. A community that will always embrace and love them. A community that I'm not sure time will heal but instead will help us find strength and redefine how we love and care for those we love most in our lives.

In our children and in our hearts, Aiden and Logan will forever live on. To the incredible families who struggle through each day, I pray you can feel the arms of thousands wrapped around you each day as we hold you tight in our hearts and keep you in our prayers.

The brightest stars are shining down on us as these two incredible boys are watching down on us from Heaven.

Today and every day, please tell the people in your life how very much you love them. No matter the age, no matter if they can reply, no matter the situation... life doesn't always give a heads up when it's about to change, sometimes instead it's quickly taken from our tight grasp.

Make every single moment count. 

Saturday, January 3, 2015

Are we still making resolutions?

2015... it still sounds a bit like a year that should be far, far away in the future to me instead of the year that has just begun. Yes, I feel a bit old just writing that out ... "When I was a kid back in the 70's and walked to school barefoot through 8 feet of snow uphill both ways..." ;-)  But really, 2015 - wow, just wow!

Another New Year is here, another opportunity to watch the great Facebook debate on whether or not people will make New Year's Resolutions. I find the posts rather entertaining to read, I'm amused by my friends who refuse to make resolutions (mostly how adamant they are not to!) and inspired by my friends who do, as I know almost each of them will hold true to the goals they've set.

I guess, for myself, I fall somewhere in the middle.  I just don't see them as resolutions but part of who I have become.

It's amazing how much we change with time, as we grow up and life happens. Life events change and shape us, even when we don't realize it. Who I am today is not who I was yesterday and certainly not who I was a week, a year or years prior.  While I was always told I was an "old soul" and grown up for my age - there is part of me that wishes that growing up I had more of who I am today inside of this mind of mine back then. I wish that for many of the years that have led up to today actually.  While I've done many great and incredible things in my past, I've made more than my share of mistakes there too. It is a little frustrating knowing that who I am today would have never made those same decisions and questions how the me of the past did. I've let many of those weigh me down and have decided it's time to let them go. Our mistakes shape us into the person we are now and while I wish I could have become who I am without making mistakes – that’s honestly an unrealistic expectation of anyone. And, well, I usually make at least one a day still - I just try to keep them small! I point out mistakes I make each day to my children, especially Allison – who, like her mom is incredibly hard on herself. I hope to show her that mistakes are how we learn and become better people. Yet while I've learned from my mistakes and they have helped shape me – I don’t believe it’s where my wisdom and life outlook has come from. That, my children get all of the credit for.

While I wish I could say I am resolving to never make another mistake that would be setting me up to fail before I even finish typing this blog. I’m entirely too realistic to make such a resolution.

The truth of the matter is if I were to make a resolution, it would be in line with the goal I have and remind myself of twice each day; when I wake up and again before I go to bed – I simply want to be a better person today than I was yesterday, or tomorrow than I have been today.

It’s not just about what I want to accomplish in life but much more about healing and becoming who I want to be on the inside. I believe this is part of our life purpose, at least it is mine, to discover in my heart who I truly am and become that person. It is, and should be, a lifelong journey of discovery filled with pride and surprise.

Each day I am reminded I only have one chance at this life, I never want to take that for granted. Every day that I have is an opportunity to make a difference, to be kinder, more compassionate, a better daughter, sister, friend and most important to me – a better mom. I have many fears in life including letting people down but it’s my children I fear letting down most of all. I want them to not only look back on their childhood as a time of wonderful memories and experiences but also a time of learning; understanding life lessons and the importance of living each moment. I guess, we could say, I resolve to improve upon being a better person each day this year.

I am, by nature, a “fixer” or “helper”. I pray that never changes about me. As I see the world around me through my eyes, I know there are people I can help and situations I can fix. I am not good about looking the other way or ignoring a situation that needs help. It gives me purpose each day and that is important to me.  At times it leads me to feel spread too thin but other times it’s energizing to me and I know there is so much more I can and want to do. I guess, we could say, I resolve to help more this year.

What may be most important this year is that I understand the need to take better care of me.  I tend to overlook that in my desire to save the world. At times, I over extend myself as an attempt to combat my depression – which overwhelms me more than anyone (other than M) would ever know. I’m beginning to realize that may not be the best approach as I find myself facing increased panic attacks and with tears streaming down my face even when I feel most at peace and happy. Depression is indeed a complicated bitch.

I am wonderful at making lists; looking through my pile of them I've noticed a theme.  Almost each of them contains a topic for me to write about.  Something important to me, words in my mind that I need to type out and want to share.  While confiding in M recently I expressed how I wish I could escape for a few days just to write.  Writing is incredibly healing for me. I love that it helps others understand they are not alone in this crazy journey we are on in life. It also helps me, to find peace and center myself. M is correct, as usual, I need to making writing a priority “me time” even if just a few minutes or an hour each day but not at the sacrifice of the sleep I’m already not getting. I guess, we could say I resolve to re-prioritize to put myself a little higher on the priority list in life.

As I work to be a better version of me each day, I've found incredible happiness.  2014 was a pretty good year for me. While it came with uncertainty, sadness and new challenges, it also came with an immense sense of peace and incredible pride in my accomplishments and growth. (*I think this is what frustrates me most about the struggle with depression and that many don’t understand – is while I am happy and in a good place, my depression still has an incredibly firm grip, incredibly firm grip.)

I've made tremendous gains in my independence and confidence. I've taken on new challenges and learned new skills. I've even managed to surprise myself which reminds me that as “set” in my ways as I believe I am – I still have a lot to learn, even about myself.  That’s a great reminder and wonderful surprise. It’s not just about what more I can learn about our world but also about me; the me who isn't guarded and stubborn, the me who isn't afraid to take a chance – or at least consider taking a chance, the me who laughs without worry and let's people in. 

There is a lot to learn there and once again it was my children who opened my eyes to it.  They really do get the credit for the very best things in my life.  Thanks to them, I step back and see things about the world – and myself – that I otherwise would not see.  The world through their eyes is really an incredible place; a world of hope, a world of endless possibilities, a world of love. It took stopping, listening, hearing and really understanding what they could see to get me to see it myself. Once again, they have changed me for the better, taking me from the very insistent, independent woman who was set on “never” to creating a private Pinterest board filled with wedding dreams of a “forever”.

I guess, we could say, I resolve to never say never.

Life is short, tomorrow is never promised. At almost 41 I attend more funerals than weddings – a part of life I just didn't anticipate happening, it’s not what you think of when you dream of growing up.  It’s the crappy part everyone leaves out – that as you grow up, those around you grow older too and losing them is something you simply cannot prevent. It’s left me with an incredible appreciation for every single day.  A fear of how much time I may have left and the overwhelming need to accomplish so much more before that time that I have no control over comes. Most of all, it’s left me with the reminder to stop and live today and encourage others to do the same.  Do you have a dream?  Reach for it. Do you have something to say? Scream it. Do you have bridges to rebuild? Start building. Whatever it is that you are holding tightly inside of you out of anxiety, fear or habit – let it out, let it go. Make each day matter. Love strongly. Live respectfully. Become the person you know is inside you and bring out the beauty and best in others. It’s only too late when we are no longer here and if you are reading this, it’s clearly not too late.

I guess, if I were to say I have a resolution this year it would be – to be brave, dig deep and find it within me to say the things I've kept inside. To continue to love unconditionally, to be a better mom, daughter, sister, friend, person, to hold onto hope, to not be afraid to dream, to keep doing my part to make our world a better place, to always celebrate inch stones as incredibly as the milestones, to remember there’s a lot left to learn about myself and finally, to stop being afraid of falling in love.

While it's quite a resolution, it's more of my daily promise to myself. Not just for this year but for every year I have the privilege to be here on earth. It's a life change that started many years ago and continues to evolve, smoothing out the rough edges and always working to improve the redefinition of itself. I am, after all, a work in progress. 

My very best wishes to everyone for the most fantastic year (and years) ahead. It’s never too late to start a new goal or dream… or to make it come true. 

Believe in yourself ~ I certainly believe in you.

Thursday, December 25, 2014

Life reminders & Christmas miracles.

Just hear those sleigh bells ring-a-ling, jing, jing,  jingle-ing too ... or not. Sometimes the visions of sugar plums that we have dancing in our heads when we are younger are not the reality of our lives when we are older. Many days those sugar plums dancing in my head from last night are thrown at me the very next morning when our schedule is out of whack.

Welcome to life with Fragile X.

When I was growing up, we had the most fantastic holidays. All of them. I can't remember a single one that wasn't just the most wonderful ever. We had (and continue to have) tradition, family, laughter, love.  We made the most incredible memories that to this day I cherish. Christmas was filled with the most.

I remember, like it was yesterday, striking up and singing Christmas carols for weeks with my mom at any given moment. Decorating the tree, with dad lifting all 3 of us girls up one at a time to put the angel on top. The lighting of the Advent candles every night at dinner while reading our message from the Advent book about the story of Jesus, that mom and dad would read when we were young. As we got older, we each took a turn reading a night at a time and leading the song that accompanied.
The excitement of writing letters to Santa, the anticipation of him coming and the wonder of if he would wake the dogs, alerting dad who would love to shoot a reindeer ;-)  Cinnamon rolls were a post unwrapping Christmas morning tradition that we looked forward to before spending the day soaking in our gifts. As we got older and questioned if Santa was real, we were always told "As long as you believe, he will come" - that alone was enough to never make it a discussion.  Even as a young adult, when I came home for Christmas, Santa would still come visit.  While at the time, I didn't understand why my parents would make the effort for their grown children - as a mom, I certainly now do.

The memories from home were amazing, I still look back and smile when I think of them - they will always hold a special place in my heart.

Christmas Eve though, that holds the most special place in my heart and where the longest lived traditions were held.  Christmas Eve was spent at my Grandma and Grandpa Fickling's house "the farm" bringing together my mom's side of the family. A tradition that started each year at Thanksgiving with the grand kids decorating the Christmas tree and our annual picture in front of it. It started our countdown of days until Christmas. The most incredible dinner with Grandma's homemade rye-bread and cookies that we would try to sneak before dinner, followed by presents, laughter and fun together and end with all of us attending the midnight church service in town. Before leaving Grandma and Grandpa's house on the farm, our family would stand in the landing and sing "We wish you a Merry Christmas" to Grandma and Grandpa.

Tradition. So many incredible memories of tradition that were so important to my childhood and in shaping me into the woman I have become. So many traditions I wanted to carry onto the next generation. So many seemingly simple things that are often impossible in our fragile x lives. So many reasons I worry my children, especially Allison, won't have the incredible memories of Christmas and other holidays like I did and so many others do.

I had always planned to follow in my family's footsteps, continuing traditions - keeping them strong creating lasting memories for my children and our family. What I had not planned on was Fragile X.

With each Christmas card of perfectly posed families, each holiday letter filled with incredible accomplishments I am thankful we are thought of by our wonderful friends and family. I am thankful for their role in our life, their friendship and love. I focus on the love in each card sent and try not to let the sadness of what we can't do creep in. I would love a family photo each year, perfectly staged in a holiday scene, smiles, sleigh bells, pine branches, sleds and snow... matching sweaters, clothing or - well anything that isn't TMNT or sports related. A quick trip to get the picture without a week of preparation, schedules, charts, reminders and practicing. Jumping out of the car without protest, prompting, cues or hitting; waiting in line and successfully having a picture snapped that doesn't require 59 takes and photoshop to get us all looking one direction and smiling.  A simple holiday tradition for many that escapes us every year.  One that requires so much effort, I have stopped even trying instead hoping to catch a moment in time on my phone with both kids happily together, even if I am missing from the scene.

There is no decorating of Grandma's tree.  I'm happy that after 15 years, we are able to decorate our own.  I hope that with time, we can include that as part of our Thanksgiving - although I know decorating Great-Grandma's tree with all of the grandchildren and great-grandchildren is a tradition we've had to let go.  And there is certainly no picture of everyone together, although occasionally we still try :-)

There are no singing of Christmas carols, there is no reading of Advent passages and no Christmas eve church service for us.  Not that we don't believe or celebrate in our hearts, we talk in passing of the birth of Jesus but have not yet successfully added it to our daily routine. I can't get Parker to church each Sunday, let alone Christmas Eve when it's packed for midnight services. A reminder that no matter how important something is to your heart, no matter how much you prepare, Fragile X always has the final say.

At Christmas, like every trip home and each holiday with our extended family you will not find me grouped with my relatives enjoying the laughs and exchanges of white elephant gifts.  You will not find me caught up in conversation or reliving memories with family I don't get to see nearly enough. Instead you will find me off to the side, somewhere a bit further away from the activity with Parker close by my side. Sometimes you will find us in complete silence as we take in the excitement around us, making memories of every smile and laugh we see around us.  Sometimes you will find us caught up in conversation and sadly, sometimes, no matter how much we prepare to avoid it you will find us mid-meltdown with my attempts to keep him, myself and anyone/anything around us safe until we work past it.

While Allison can easily provide me a list a mile long each year with wants for the holidays, Parker is much more difficult as there is not much that he honestly wants or wishes for which adds another level of stress to our already difficult holiday as I try to find gifts he will like not just from Santa but from almost every member of the family too.

There are times when it's easy to get down, the holidays certainly have that double edged sword for many. It's easy to reflect on what we do not have, what we cannot do and how different our lives are. Living with a disability is a challenge, every day, you can always multiply it significantly on the holidays. The last couple of days, while preparing Parker for success -  my mind couldn't help but drift to the darker place.  It's not just my children that are missing out on memories and traditions but my entire family. My grandma, my parents, my sisters, our cousins.  It doesn't affect just one of us, it has changed us all.  There is, undoubtedly significant guilt that comes to play each holiday season knowing how much has changed because of how different our lives are due to the disability we have been faced with. Our family has done a wonderful job of doing our best to keep tradition and time together intact and appreciating the new ways in which we do. Parker is always encouraged to join but never pushed. I am always acknowledged as I am a distance away with him but not made to feel badly. I do my best to continue to smile and hide the hurt of celebrating from the side.

This year, time reflecting on tradition while preparing Parker for success has consumed me. I've been a bit lost, consumed by the feeling of letting everyone down. In my week of visual schedules, reminders and talks with Parker to prepare him while also mentally preparing myself for anything that may go wrong I was determined to make the memories I wanted, that I feel as though I have missed out on as well.  The memories I watch my family make before my eyes that I don't get to join in on as Parker requires so much of my time and attention.

The night before Christmas Eve, both of my sisters and I were home along with my parents and all of the grandkids. I had looked forward to an evening of gifts, laughter and after the kids went to bed - games and catching up.  Instead, when Parker was ready for bed and I laid down with him as I always do when we are away from home, I fell asleep too. I missed out on that opportunity, sleeping right through it.

Christmas Eve morning brought the holiday and away from home anxiety I was prepared for.  Thinking I caught it early and was stopping a meltdown before it went full force, half way through I was caught off guard, those mighty 15 year old teeth found my finger and clamped down on the tip of my finger smashing my fingernail under his teeth until I could convince him to let go. As he settled down the anticipated "my teeth can't help it" words were echoed as sad eyes looked my way. A reminder of how challenging life can be for him and hopes that this would get the anxiety out of the way before we left for great-grandmas filled my mind as I fought the tears from filling my eyes.

Christmas at Great-Grandma's went beautifully.  Great-Grandma and Grandpa Dick had cleared a spot for Parker's inflatables before we arrived, a gesture that honestly touched my heart. While many do not understand his need to take the inflatables with him places, they bring a comfort to him that makes life just a bit easier. It's always nice to have them welcomed.  As expected, Parker and I spent the majority of our time off on our own own, still near everyone but enough away from the excitement to feel relaxed.  It's not decorating a tree or posing for a picture but he eats at the table now and that is a major accomplishment in itself that we celebrate and see for the success it is.

Parker's life and disability come with many challenges, even Allison's though she is very mildly affected - but they also both come with incredible blessings. Innocence, hope, the ability to see good in everything - I can thank their Fragile X for this.  While at 15 and 12 most kids are well beyond the days of believing in Santa, the magic is alive in our house. While Allison is putting all of the pieces together, I remind her that as long as she believes in her heart, Santa will always come. Just as my parents once told me.  Something I now understand why. Parker, however, has many years of believing ahead of him, Christmas will always hold that magical element of the man in the red suit and his flying reindeer who can make miracles happen. It's a fantastic gift that has been lost on many of his friends and I am able to still cherish each year.

Their excitement helped significantly with my lost feeling of letting them down, failing as a mom not being able to provide them with traditions or life lessons that are important to me yet lost in our world of disability. I couldn't shake the feeling of failure completely though, no matter how hard I tried.

After a very late night of multiple attempts to get everything wrapped while excited kids woke repeatedly up and pets tried to "help" in the least helpful of ways.. it was here. Christmas morning.

We had asked, repeatedly, our friend Dan to come join us Christmas morning for presents. Repeatedly, he told us no. I didn't even wrap his presents, they sat in a box off to the side - unwrapped until I actually needed to do it as I was convinced he would not show up. A friend I have known for 16 years who has watched my children grow. A friend who can always make us smile, even when he struggles to find one himself and understands Parker in a way very few can. Both Parker and Allison have a connection to him that I simply can't explain beyond a love and respect that is unconditional. He is the first person they ask about in the morning and the last name I usually hear before they fall asleep. As I had prepared myself to tell them he was at his sister's house, I checked my phone as we began to wake up from my bed where the 3 of us were curled closely together.

Over the next few moments in a matter of texts, a Christmas miracle unfolded before our eyes....

The sheer excitement of my children surpassed any care in the world if Santa had come or not.  As our Christmas miracle came to the door, 3 bowling pins in hand, smiles lit up our home, I saw in my children the most incredible gift I could have been given, the reminder that I am doing something right.  More important than presents under the tree, more important than posing for Christmas cards or even tradition was the unconditional love for our friend and appreciation for his part in our lives. A clear reminder that it's people and time together that are most important and no matter our struggles with Fragile X, that unconditional love for others is something that no disability can take away.

For the next hour as presents were unwrapped and memories were made - I was reminded through the laughter and chaos that although our traditions and lives are different, it doesn't mean we aren't making memories. It doesn't make our way of participation less, it doesn't make our traditions not as important or our struggles the victors; it makes us, just like everyone else special and unique.

We may never sing "We wish you a Merry Christmas" when leaving Grandma's house but our love is not less, in fact, I believe our love is more.  Our love is innocent and pure, our love is not bought or based on what others think. Our love is deep, it is true and best of all it's unconditional allowing us to see into the hearts of others and loving them for who they truly are and appreciating their acceptance of us.

We are blessed with amazing family, amazing friends, an amazing community and an amazing Fragile X world - that all embrace us though our successes and our meltdowns.  We are blessed with those who believe in us and those, who even though they'd rather be sleeping, never let us down.  We are blessed with laughter and smiles, hope and belief in the good in our world.  We are blessed with determination, persistence and appreciation.

And this year, we were blessed with our own Christmas miracle to remind us that it's the people in our lives we value, appreciate and love most of all and that despite our challenges, this Momma is doing something right.  Sometimes it take a miracle to remind me of that ;-)

From our house to yours, may your holidays and every day of your lives be filled with reminders of love, happiness, family, friends and that you are doing something right. And, if you are lucky like us... 3 bowling pins!

Tuesday, December 23, 2014

Share your light

I've held onto sharing this post because of the holidays, however, after a great conversation with a very wise friend - I have been reminded that the holidays are actually the perfect time to share this message and remind us all to share our light.

I have been very blessed in life with an incredible amount of friends from all over the world, all walks of life, all with unique views.  From each of them, I have learned tremendously and grown as a person. For each of them, I am thankful.

I believe that people come into our life for a reason. We don't always know what that reason is right away - or ever - but I do believe each person has a purpose in our life, just as we do in theirs.

It's that time of year, between Thanksgiving and the New Year when I see so many of my friends reflecting on what they are most thankful for and the many blessings of the year that is coming to a close as they prepare with excitement for a new year ahead. Their joy is contagious, the memories are warm and the hope for what will be is exciting. I love to see and hear this type of reflection, it's good for my soul, my heart and my mind.

It's not the case for all of my friends though as many have found themselves in a very dark place where I have once been. For those who have been there, or are there now, we all end up there for different reasons.  For some, it's a life-long struggle with depression. For others, it's the loss of someone they've loved. Some are faced with incredible challenges that others can't even begin to fathom and that most are unlikely even aware are being faced. For a few, it's losing their way and a series of mistakes they find unforgivable.  It's a million other reasons, some of which we simply will never know, but every single one is valid and real.  Every reason (or combination of reasons) have left my friends at a place I hate to admit I've been, at the very end of the rope holding on by a thread ready to take the scissors to cut yourself free.

I was lucky, I have an amazing person in my life who never left my side, 2 beautiful children who I would forever shield from pain if I could and people who care more than I likely realize.

Each time I see a life lost to suicide I hear so many of the same responses "They had no idea how many lives they touched, they had no idea how much they meant to me, they didn't realize the impact they had on this world, they had so much ahead of them...."  I know that when you are drowning with depression, that is hard to see and more so to believe, yet I try to remind my friends who are struggling of these very things.

Recently though, a new perspective was brought up in conversation. The other thing we often are told is that suicide is selfish. It takes a person away from the world who loves them, leaving unanswered questions and people in pain.  During that tearful conversation I was asked, "What makes me more selfish than you?  I live in pain and with struggle every day while there may be hope for the future, there is also the reality of today which sucks. I am not living, I am going through the motions for others while I wait each day to die. You want me here because "you" need me, "you" want me, "you" are better when I am here.  Why is it ok for you to be so selfish, wanting me here for you but it's not ok for me to say I just can't do this anymore? What makes you so important that it's ok for your selfish needs to be more important than my need to stop the torture I live with each day?"

I didn't have an answer. I still don't. I don't know that I, personally, ever will.

What I do know is I don't want to lose my friend, ever.  What I also realize is I don't always get to make the decisions. (Although our world would be a much more peaceful happy place if I could!) That doesn't mean I walk away or encourage it, that is not me or who I want to be. I will continue to do all I can to help my friends, to help them see we hold the pen in our book of life.  Someone may have ripped out several pages of our book leaving us feeling incomplete and not worthy but we don't have to let that be the final chapter, there is always more to write.

Our talk really opened my eyes to many things, mostly on death which is a topic I avoid because of how much it hurts to think about.  The reality is, none of us know.  Yes, there are some who are given a grim diagnosis with limited time left and we are aware our days are limited.  What we don't know is that they won't get hit by a car crossing the street the next day and still be taken from us before we are ready.  We don't know.

We don't know how much time we have left, not a single one of us is walking around with an expiration date on us that we can see. Imagine if we could though.  Imagine if everyone in  your life had an expiration date stamped on them that you could clearly see.  The cause of death, irrelevant. If you knew the date, would it change your actions?  I believe it would.

So why aren't we letting people know how much thy mean to us?  How much of an impact they have on our lives, community and world?  Why is it we so often hear at funerals "they would be amazed by how many people came out to pay respects?" All of that, we have control over - every single day.

Every day we have the opportunity to let those around us know that we love them. We have the opportunity to tell them what an incredible impact they have made on our life.  We have the opportunity to let them know the difference they make in this world.  So, why aren't we using that opportunity each day to do exactly that?

We don't get a do-over after someone has died. We don't get to go back and be kinder, to talk to the person no one speaks to, to offer words of support and encouragement, to tell someone how much they really mean. We get regret.  Regret for not taking the time. Regret for not using our words. Regret for not making someone else a priority.

Life is busy, I get that but really, how long does it take to make a phone call?  Send a text?  Write an email?  There is no promise that tomorrow you will still have that chance.

I went through a good portion of my life not fully realizing death could happen, a silly feeling of invincibility. As I've said goodbye to more people than I could have imagined in the past couple of years, I realize that I'm not invincible. I don't get to chose when and I don't get to come back and say what should have been said. I don't get to promise I'll be here tomorrow, next week or next Christmas.  As much as I want to, I simply don't get to honestly make that promise knowing it's out of my control and I may not be able to keep it.

For my friends who are struggling, I created my own bucket list of memories I want us to have. While I pray they find strength for us to have many more years together, I also understand I could very easily be the one not here tomorrow.  Not from taking my own life but from something out of my control.  In many ways making my bucket list is a gift to us both. A bucket list doesn't have to be elaborate, you don't have to jump from a plane to have something on your list - it could be as simple as telling someone each day you love them, planning a special dinner or meeting them for lunch, sharing a movie, taking a walk... it's about memories, it's about time... it's about no regrets.

I don't know what tomorrow will bring for me or for anyone in my life.  What I do know is that right now I am here, right now I have a choice.  I can make each minute matter or I can let them slip away.  Every minute I am here, is an opportunity to make a new memory. This hits hardest when I look at my children. We never go to bed mad or upset with each other or without saying "I love you.". I have the choice to make each minute with them matter, to boost their belief in themselves, to help them see their importance and worth, to help them appreciate the smallest things in life, to help them see the world as the amazing wonderful place it can be... or I have the choice to let that slip by assuming I'll have another moment to make that happen.

I see this in a much larger way now. I am not perfect, I will always make mistakes. I pray that they are small and that I learn from them.  All I can do is try to be better in the next moment than I was in the previous one. Every minute is a fresh start, a new opportunity to be a better person and to make a difference in others.  A positive difference.

I can't promise to save the world, sadly I can't promise to save each of my friends - even if it makes me selfish, I would save every single one of them. I can't promise I will be here tomorrow.

What I can do is make each day count, for myself and for those around me. There are people in our lives this holiday season who won't be here for the next one.  It's a promise not a single one of us can make.  This holiday season and every single day from here out - make each moment count.  Take the time to tell people how much they mean to you. Take the time to create a bucket list of memories you want to make.  Somethings we shouldn't be waiting on.  We shouldn't need to know we are going to lose someone we love or treasure to tell them how amazing they are and create memories of a lifetime.

We have right now.  Please, take time today, this holiday season and each day after to make it a point to say "Hi" to the person you pass in the hallway who could use a smile, to tell people you meet what an impact they make on your life, to walk away from what is hurting you, to forgive yourself for mistakes of your past and live for today and your future. Take time to make a positive difference. Take time to smile more, laugh more, share more.  Take time to reach out and let someone know how very much you care. I can't think of a more perfect time to remember the importance of lighting the flame for someone in our life so they can be brighter and shine more than the holiday season. 

For everyone in my life, thank you - for making me who I am today and who I will be tomorrow.  Thank you for keeping my light shining and the ability to use my flame to light the flames of others.  Please, share your flame this holiday season with your family and friends.  Together, we can make a brighter world.

Live each day.  Really, truly live it.

Saturday, November 15, 2014

When part of your life is missing...Derick Higgins - Adam Wilson

It's been awhile since I have had time to sit down and write. I have a list of 8 topics on my children and life that I really want to share and, with time, I will.  Sometimes, there are things that pull at my heart so much they take priority.  This is one of those times, I hope you will read this completely through and do what you can to make a difference in the lives of this family.  It takes a village, the size of our world, to find answers sometimes but I do believe we can do it.  Please help.

On March 21, 2013 a local man, Derick Higgins, went missing.  He was 21 at the time.  I've never met Derick, or anyone in his family that I'm aware of - in person - but the story was quick to spread around our local community and caught my attention.

As expected information about him began to surface, not only sharing facts but for many like me - leaving us feeling as though we've known him forever.

Derick went to Cuba High School where his fantastic athletic talent would shine through in football and track.  In 2009 he was a finalist for the Peoria Journal Star's Track and Field athlete of the year after becoming the Class 1A state champion in the 300-meter hurdles.

Details about his incredible personality and love for his family and friends where reflected on by many. After high school he struggled initially with college, deciding to enter the workforce instead. Like many in their early 20's he struggled with finding his place and the best decisions were not always made. With an incredibly supportive family, he was determined to get his life on track, saving money for a house and new truck; staying in instead of going out; helping around the house with younger siblings and family.  He was on the right track.

He began to struggle with depression but was open about it, talking with his mom and working his courage up to share more with his doctor to get help.  That appointment never happened, Derick went missing first.

Here's the thing about Derick's disappearance that bothers me the most; it's that gut feeling that he didn't just willingly take off.  Part of the difficulty his family is facing is his age.  "Technically" he's an adult and can leave without a trace.  True.  I get that.  But nothing I have read and no one that knows the family that I have talked to has given me any impression that this would be the case.  It doesn't fit.  Not even a little.  That bothers me.

I can't even begin to imagine not knowing where my child is.  I can't even stop and attempt to imagine how it would feel to be in their shoes. I pray I never know. I also pray that if, God forbid, I ever am - that people from near and far go out of their way to help reunite our family. No matter the age, your child is always your child.

I can't shake the continued thoughts of this puzzle from my mind. Every time I see a picture or hear it discussed I replay everything I know and end up with the same sinking gut feeling... there is a bigger picture here something is not at all right. I don't believe he just left.

Step back and look at the pieces of this puzzle and I feel you will agree:

3/21/13 Derick and 3 co-workers did not show up for work.  Derick withdraw almost $6,000 from his bank accounts that morning in Canton. It was the last time he was seen.

3/24/13 - 3 days later, Derick's car was found abandon in Florida after a minor wreck. A trail of clothes was outside of the vehicle, his wallet, driver's licence and $380 cash was left inside with other personal belongings.

10/2013 - Derick's car was demolished in Florida

4/22/14 - Derick was arrested and booked by the Las Vegas, Nevada police department under the name of "Adam Eugene Wilson" for vagrancy.  As part of the booking process, his fingerprints were taken.  He gave them the correct date of birth (June 20, 1991) but the name did not match.  When police in Las Vegas met with him again in June, the same name and information was given.

10/27/14 - Local police run Derick's fingerprints and discover a 100% match from the April Las Vegas booking.

After learning of the news and seeing the booking picture which is clearly him, Derick's family recently spent weeks in Las Vegas combing the streets and homeless shelters in search of their son.

Some of the family are returning empty handed and unsuccessful, other family remains, new friends continue to join them in Las Vegas for the search.  I pray those who are returning are also returning with hope, hope that he is still alive and one day closer to being found and brought back home safely to them. I pray those in Las Vegas find him safe soon and are able to reunite and bring him home.

Right now, Las Vegas still appears to be the right starting place as he was cited most recently on 10/7/14

It appears Derick was still in Las Vegas as recent as 10/07/2014 and is most likely still there. He was cited for vagrancy again on 10/07/2014 using the name "Adam Eugene Wilson" see for yourself by searching the Clark County website using case number: 14M29208X We need flyers up at all the homeless camps in Vegas, and other areas frequented by the homeless such as shelters, food pantries, etc.
Earlier in Derick's life he was involved in a car wreck that resulted in temporary memory loss.  The family fears that this could be the case again.  It is very possible that Derick does not know who he is.

There are so many unanswered questions, so many gaps to the story.  Why did police never search his room?  What ever happened to or where were the other 3 employees that didn't show up that day?  Derick had been saving money to buy a $6,000 truck that he was encouraged to save and pay cash for so he wouldn't have the debt.  Was the money withdrawn because he had the intention of buying a truck or because someone knew he had the money and wanted it?  Why did it take so long for the fingerprint match to show up?  Is it just not run more frequently?  Why the name Adam Wilson?  It's not a name the family knows. Did he have an ID with that name?  If so, where did the ID come from? Is he being found in the same location by Vegas PD?

What we know as of October, he was alive, homeless and living in Las Vegas.  There is no way to know if he is still there or living elsewhere now.  There is no way to know if he has suffered memory loss from an accident or worse.

What we know is there is a family who would do anything to have their son/grandson/brother/nephew/friend home again.  There is a family that loves him unconditionally who's heart is breaking every day.  There is a family and a community with a piece of their life missing.

My heart tells me there is something bigger going on here and it's breaking  that this family is mostly on their own trying to find their son. I've shared information on Facebook but it's not enough, I want to do more so I am reaching out to you for help.

We need to find Derick.  We need to get him help and reunite him with his family. We have to accept he could be anywhere at this point, odds are high that he remains homeless wherever he is.  We need his story out there, shared, his picture out for people to become familiar with his face and always looking.

The more people who read and share this, the more people we reach.  Imagine if a part of your life was missing... wouldn't you want someone doing what they could to help you too?

Please, take the time to share his story, share his picture and help the family get the word out. There is valid reason to believe and be concerned that he does not know who he is an may startle easily.  They are asking that if you believe you see him to discreetly take a picture and post it on the Hurry Higgins and Hurdle Home Facebook page along with every detail you can to help the family.  If you have any information, call the Fulton County Sheriff at 309-547-2277
Derick is considered "Endangered and Missing" 

If you Google Derick Higgins or go to any of the Facebook pages or links below you can find lots of information on this story.  Please, read more and most importantly do more to help.  I do believe, together, we can help this family have a happy ending to this very difficult story.

You can also help the family financially as they search to find their son at 
You can download and print off flyers at this link

A few Links:

Help find Missing - Derick Higgins Facebook page

3/31/13  Peoria Journal Star: Former North Fulton Track Star Missing

4/15/2013 Canton Daily Ledger Missing Smithfield Man...

4/18/2013 - Leon County FL Help find Missing Person

July 2nd 2013 Footprints at the River's Edge: Raising awareness for young missing adult males

Jan. 4th, 2013, Peoria Journal Star:  Luciano: Where is Derick Higgins?

April 30, 2014 Canton Daily Ledger Reward Offered

March, 2014 - updated Nov 2014, NBC News Missing In America

Nov 12th, 2014:  Peoria Journal Star: Luciano: Update Missing person Derick Higgins

Nov 13th, 2014 CILNews Now: Family of Missing Fulton County man search Las Vegas

Nov 13, 2014 CIProud News: Update Missing Fulton County Man

Nov 2014, from KNTV in Las Vegas

CNN iReport is view-able here

In the first 24 hours since this blog has posted, over 15,000 people have viewed it, numerous people have shared it on social media.  Please keep this going.  Please help the family in their search to bring their son home.

The thoughts and prayers of our family continue to be with Derick and his family.  We pray they are safely reunited and home soon.

I am so extremely happy to share the update that Derrick has been found alive in San Diego!  His parents immediately flew to California to be with him where he welcomed them with a hug.  The journey ahead for this family will be long, I am sure there will be more questions than answers. For me, the answers do not matter.  What matters is a family has been reunited.  Derrick wants to come home. This family will again be complete.
I pray for a smooth transition back into life here in rural Fulton County.  That the focus from the community is not on the questions or the search for answers but on helping this family become whole again and prayers that they never again be separated.

If only every missing persons story could end with reuniting hugs... Please keep this family in your prayers as they begin the journey ahead and all of the families who continue to search for their loved ones that they, too, may be one day able to hold each other tight in their arms again.

Monday, October 13, 2014

Discussions with my Daughter... the ones only I can hear.

Discussions with my Daughter ... are sometimes only in my head.

A few weeks ago, I finally worked in some time to take down the pool.  Of course, the day we decide to do it the weather was so warm we should have been swimming in it instead.  None the less, it was the one day I had and I was determined to get it done.

To move the project along, I asked Allison to help me.  Repeatedly. While she said "Yes" she would help me each time I asked, her eyes and attention never actually left her Mindcraft game on her iPad. Finally, I told her one last time to please come out and help me before I went outside to get started.

That's when this discussion with my daughter took place, more or less. It was not necessarily a discussion with my daughter but with myself about my daughter going on in my head.  One that may have been very good for both of us, even if only one of us actually heard it.

It went something like this...

I had been scrubbing along the bottom of the pool while blasting it with the hose for awhile... long enough to be basically done when I had begun to accept you were not coming outside to help as I had asked.  My mind debated between several conversations we would have if I went back inside to tell you to come out. I thought of how completely dead I would have been if I would have not come out when asked, or if I would have been asked multiple times by my parents to do something at your age.  (At least with my dad, I honestly can't remember my mom asking me to do much outside of clean my room which I rarely did so...maybe not "completely" dead - it would just depend on which parent asked!) As I struggled between disappointment, frustration and feeling like I'm completely failing as a parent I looked up to see you standing on the deck, eating a Popsicle looking down curiously at me.

"Hey there" I said to you, "I'm glad you made it outside to help me.  Do you want to grab a towel and jump in here to help me finish scrubbing?"

You looked at me for a minute while finishing your Popsicle and then, without saying a word climbed the ladder into the pool to join me.

"Why are we cleaning the bottom?" you asked in a curious and innocent tone.

Appreciating your interest, I explained how there were places on the bottom of the pool that dirt and stuff had built up over the summer that we never got completely cleaned when vacuuming it and how it's better to get it completely clean and dry now before we put it away or next summer the pool will be disgusting.

Happy with that answer, you let me know you would rather spray the hose than scrub with the towels.  I felt that was fair enough and handed over the hose.  Together we worked to finish cleaning the bottom, reaching every spot that needed our attention.

Draining the small amount of water left turned out to be more difficult than I anticipated.  I too am learning as I go through life.  Feeling a bit overwhelmed by the heat, I let you know I was going to take a break to get some water and rest before taking the pool apart and figuring out the answer to draining the rest of the water. While I went inside, you happily played on the swing set. I thought to myself how much I appreciated that you stayed out to play instead of coming in and jumping on the iPad.

When I returned outside, I walked over to the swing set to let you know the next steps and that I would need your help.  I had walked into your world, filled with imagination and felt badly asking you to leave it to work with me.  In my mind I justified the importance of balancing work and play... even at 11.

As I walked around the pool taking apart the pieces you would pick them up and put them in a pile near the garage. It went fast enough, I didn't even mind stopping to pick up some of the pieces for you as you had a habit of getting sidetracked during the process.  In my mind, I began to wonder about what goes through your head, what do you see through your eyes when your imagination is free to explore and create in the world around you.  You've always had the most incredible imagination, this hot late summer day was no exception and I couldn't help but smile as I watched you interact with each piece clearly off somewhere else more fun than taking down the pool in our backyard.  I stopped now and then not to tell you to hurry up but to appreciate and adore the innocence I was witnessing at that moment.

I talked with you over the options of getting the rest of the water out.  We agreed that w could pull one end over the other, basically flipping the pool to dump what was left.  We talked it through together, your input was appreciated and then I walked over to begin pulling the far side to the direction we wanted it to go.  You watched.  My mind wondered why on earth you were watching, that wasn't at all what we had just discussed yet there you stood, not moving at all.

There is that part of me that wanted to snap at you, telling you to get your butt over with me as we had just talked about to help me pull the heavy pool over to the other side. I couldn't bring myself to do it as I saw how intently you were watching what was happening, almost calculating if it would work or not.  When the pool became too heavy you ran over, holding a spot near me ready to pull together.  I was not sure why you chose to grab where you did so I stopped and asked.  You simply replied "this is where I need to be" and it turns out, you were right, it was the perfect position to help us dump the pool.  I smiled as you smirked with our accomplishment.

We flipped the empty pool back to start drying it off.  I handed you a towel while taking one of my own to start soaking up missed spots and drying what was left.  As I worked, you simply wandered around the pool tossing your towel down once and leaving it there.  My frustration was building as I noticed you had left your towel and were interested in the feel of the pool between your toes instead of looking for water spots to dry.  I asked what you were doing and why you were not drying the pool.  You simply said that you "could not find anymore wet spots" so you were doing this instead while you waited.  I wanted to be frustrated as there were clearly many puddles of water remaining but instead appreciated your curiosity and wonder of how the pool felt different in different places along the bottom.  Feeling out each spot and how it varied from another.  It was actually fascinating to watch you.  You shared with me the difference in the spots and encouraged me to feel them too.  Against what my mind wanted me to do, I stopped and did it anyway...I'm glad I did.

While the pool was drying in the air and sun, we talked of picking up all of the pieces to be stored for winter.  I grabbed a couple of pieces and headed to the shed, cleared out the spot they would go, put the pieces I had in and walked back for more.  You were still trying to figure out how many pieces you could balance and carry at once. I made three trips, you continued to fine tune your balance and attempt to add pieces, frequently dropping some that you had in your arms.

I was hot, tired and wanting to be done.  I tend to go through life a little too fast sometimes so on my fourth trip back for more pieces instead of snapping at you to just take 2 at a time and get them put away, I asked if I could add a piece or two for you to help you balance knowing if you didn't have to bend over to pick them up the odds of keeping your balance were better. Your face lit up as you explained to me exactly how to stack them in your arms, 3 on each side, triangle tip down - flat side up.  While I could see the fault in your plan, I could also see the determination so I stacked them exactly how you asked verifying each piece was how you wanted it.  With 6 pieces stacked in your arms you began to walk to the shed - beaming from ear to ear.  I walked beside you carrying my 2 pieces, also smiling and watching the pieces begin to slip from your grip.

When they crashed down we both burst out in laughter.  Not at your failure as neither of us saw it that way but at the attempt gone wrong.  The busy part of my mind wanted me to say "enough" of the silliness we needed to get this done.  But the mom in me, constantly amazed by how your mind works, won out and encouraged you to try again but maybe stack them a bit differently.  Taking a minute to lay them out on the ground you quickly saw multiple new ways to fit the flat and triangle pieces together.  Starting with them flat, then adding the triangle piece down to wedge between we stacked not only your 6 pieces but my 2 on as well. You successfully made it to the shed...we laughed when you discovered you had no way to put them down without dropping them - so I encouraged you do to just that reaching out for a fist bump after your hands were again free.

I smiled as I reached for each piece to stack in the shed while you ran back for more and ready to load your arms without me using one of the new ways you had figured out.  I congratulated you on your success when you returned with the next load.

When all of the large pieces were away you drifted off away from me again filled with imagination you were back in another world.  We still had lots of small pieces to pick up, I called for you - you continued to play while singing a song you had just made up. I took my load of smaller joint pieces to the shed, as I walked back I called you again.  I was not sure what you were thinking or playing but you were very deep into the thought of it not hearing my call either time. I made another trip to the shed.

As I picked up my  joint pieces ready to call you over and remind you of why you were outside, I looked over and watched. Beyond the signing I watched your motions, your curiosity as you checked out bugs and I stopped to appreciate the incredible ways in which your mind works.

You see, while I needed help, I also need you to take this time in life to discover, to explore, to imagine, to believe.  The older you get, the harder that becomes.

There will be a time in your life where part of your brain is hurried too.  I just don't want to rush that, I don't want to take away your curiosity and wonder of the world you are exploring around you. Instead of calling you over, I went to your side when you asked me to come check out some bugs that you found.  Trying not to let my distaste for the bugs show, I pointed out what I saw in them too hoping to build your curiosity and tell you what I did know about the ones I recognized - hoping it would encourage you to learn more and most of all asking questions not just for answers but to encourage more thought.

You live a life different from your friends, you were born into a situation that forced you to grow up faster than most.  You have more responsibility, more frustration, more understanding of disappointment when things don't work out.  While you struggle with how fragile x complicates your own  life, you take on tremendous responsibility of helping to care for your brother who is significantly impacted by his disability.  Moments for just us are rare. Even when we have a job to do, it's important for me to let you step back and just be 11 and more importantly to enjoy this time for just the 2 of us even if it wasn't something we would have chosen to do.  While your brother stayed inside to watch t.v. our world outside was quiet and filled with opportunity to take in the world around us .  We both had a choice, to focus and work quickly and hard or to slow down and take in so much more than the work at hand, appreciating time, the world around us and curiosity. I'm thankful we both chose to slow down and look at the world in a new way during that time, I know the difference it made in me being able to appreciate the world through your unfiltered eyes.

As we walked away to finish picking up the joint pieces when you were ready, you couldn't just pick up one with each hand and walk them to the shed though, that would be too easy.  You are always looking for new ways to make things happen and how you can stack items to carry more than two at a time.

Instead of being upset, I was thankful you were there to help me and encouraged your ambition to carry more pieces.

I wondered if at 11 I had your imagination, curiosity and vision - you see I too, liked to daydream and imagine.  Like you, I loved to make up songs, I still do you hear me sing them often to your brother.  You've never been impressed with my silly song ability, the songs in your mind are much more complex and thought out.  You put many of them in your song book, like me - you love to write and see something come together.

As I started to roll up the liner of the pool, I sent you in the house for some duck tape to hold the tarp together. A significant amount of time later (I was ready to go see what happened to you) out you came with tape in hand.  I had the liner completely rolled up and in the tarp ready to seal closed with the tape.  When you handed it to me, I realized it was masking tape and gave you a look.  You said it was all you could find and assured me it was still sticky while sticking a piece to your arm.  While you were right, it was sticky, it didn't have the strength needed for this project. I decided we were fine without tape and put the final piece of the pool in the shed finishing the project we had started together.

As we walked back to the house, you asked me the purpose of masking tape for which, I had no answer.  You laughed at me for owning it when it doesn't have a purpose.  I reminded you everything has a purpose even if it takes us time to figure it out.

Inside the cool house we fixed glasses of ice water to drink to cool us down, as I handed you your glass I put my arms around you for a hug - while you never knew of the conversation going on in my head - I heard each word.  I could see you, I'm always watching.  You make me proud, of who you are every single day.

I kissed your forehead as we went to sit down.  You picked up your iPad and returned to your game while I sat quietly watching you, appreciating the many ways in which your mind works.  And in complete awe of how you are able to slow mine down to be sure instead of rushing your life along I stop to encourage the curiosity and exploration that build within you.  I remember once being filled with never ending imagination - I still am only in more focused and realistic ways.  At times I miss the playful imagination of far away lands I had as a child and cherish that your mind is still able to whisk you away in such amazing ways.

While the conversations that impacted us both the most today were all inside of my mind, they changed my actions because you changed my thoughts simply by being you. Thank you for slowing me down, giving me the opportunity to appreciate not only our time together but all of the amazing things I love most about you.  You continue to amaze me every single day.

I was once 11 too.  I remember.  I want to keep the curiosity alive not only for yourself but for your mom, who at 40, can still see your world through the eyes imaginative eyes of an 11 year old.