Yo-Yo No Mo

This time last year I had begun a weight loss journey. Again. For the millionth time. I jumped in with both feet and was full-speed ahead and had great results in the first few moths of the year. As time passed, I slipped up. Had some bad days, which led to bad weeks, and bad months. It was all or nothing and I left little room for forgiveness. I was hard on myself - as I tend to be. My passion and fire quickly faded and I was back to living my life on auto-pilot. Eating whatever was available. What was "convenient." Any weight I had lost was packed right back on and then some…the story of my life.

I know I am not alone in this struggle. I am not the only one who has battled with her weight, started time and time again to loose weight and get healthy, only to end up feeling like a failure when the changes aren't sustainable and goals are not met. We feel defeated. Many of us busy Moms, wives, professionals, trying to make it all happen and meet the needs of those around us. The never-ending pile of laundry or dishes mocking us at every turn. Seeing the posts of our "friends" on social media who seem to have it all together - the ones who actually do yoga to constitute the daily wearing of yoga pants.

At the beginning of this year, I reached out to a friend who shared some of her health and fitness goals on Facebook that had caught my eye. These were't your typical "loose 20 pounds" or "loose 5% body fat" goals - it was "fit comfortably in a size ** jeans" and "make healthy food choices 80% of the time." I was intrigued. She did not hesitate to suggest we meet up and work on setting some realistic goals for me - I was thrilled and grateful for the generosity of her sharing her time and knowledge with me.

I knew I was uncomfortable in my own skin. I hated the way I looked in pictures. It was becoming increasingly difficult for me to keep up with our VERY active son. I was suffering from a host of health issues that I knew could be improved if I was making healthier lifestyle choices. I was ready. Again. For the LAST time to start this journey. I was energized after our meeting and got to brainstorming, journaling, charting and planning what my new lifestyle would look like.

My little pink book

So what is different this time?

Everything.

When I sat down to think about where this journey would take me and what I want my life to look like, I identified a few key points. I do not want to suffer from any disease that I could have possibly prevented if only I had lived a more healthy lifestyle. Many/all of the ailments I suffer from could be improved with a healthier lifestyle. I'm ready to quit sabotaging myself.

Another important piece of the puzzle is that our son will require some level of care throughout his lifespan - I want to be here as long as I can so that I can help transition him into the most independent living situation that he can be successful in - I need to be here and healthy for that.

As for strategy and execution, that looks different this time around as well. It can't be all or nothing - that is not realistic and I realize that now. There needs to be room to live and enjoy all of life's experiences…which must include wine and chocolate! No more beating myself up for a "bad day." This is a marathon, after all, not just a quick race to a clear finish line. There will alway be goals to work towards, new challenges I will face, and ultimately a whole new world that I will be living in. I am taking everything not just one day at a time, but one meal, one snack, one minute at a time. I have studied the principals of Buddhism for many years now and I finally feel that I am hitting the stride of a proper "practice." Being present in each moment of your life is so damn exhilarating - I highly recommend it!

No more judgement. No good or bad. No day but today. 

I am not living in this brave new world alone - I am unbelievably blessed to be on this life journey with my amazing wife. She has struggled in the past with the best way to support me in these types of endeavors and I don't blame her. She has never struggled with her weight like many women have. It's not like I ever made it easy for her, either. Instructing her to discourage me when making less than healthy choices, then biting her head off when she did LOL! It has been an emotional roller coaster to say the least and she has been quite the sport about it all loving me through each attempt, success, and failure.

Did I mention that my wife is the bomb?

Something has changed in her this time around, too. She started leaving me little love notes and inspirational quotes around the house. Little nuggets of wisdom and messages of encouragement that give me an extra little spark each day. She is getting more adventurous in trying the crazy recipes I find on Pinterest and Facebook and actually liking them! She is always willing to wrestle with Jackson and keep him distracted if I need to hop on the treadmill for a while or take an extra lap around the park. There is no way I could do this without her full support and the additional support I get from my online fitness community. I recently got a Fitbit and LOVE the social networking component! I'm a pretty competitive person and enjoy a good healthy competition amongst friends.

Nuts and bolts at this point: I am using My Fitness Pal to track my food and account for everything I eat and drink. My goal is 1,200 calories a day and I'm happy to say that in the last 6 weeks or so I have only gone over that daily goal a handful of times. I am planning and prepping my food each week and being much more mindful of eating more nutrient-dense foods - veggies, lean meats, healthy fats, etc. I have not instituted a formal workout plan yet. I have simply tried my best to hit that 10,000 steps a day goal any way I can. Some days it happens naturally and some days I have to hop on the treadmill. I have a little notebook where I have inspirational quotes scattered throughout where I record my weight and measurements periodically, write down any workouts I do, and journal a bit to reflect on days where I knocked it out of the park or days when I feel I could have made better choices. I have more energy, I am sleeping better, I am overall more happy.

I am sharing this with you all in part to help hold myself accountable but more importantly as a bit of a declaration to the world: This is the beginning of something AWESOME!

Babies & Prophetic Dreams

When I was younger, I always knew that I was destined to be a Mom. More than just the biological drive or the whole "be fruitful and multiply" thing - it was my purpose. I had an overwhelming feeling that my child was going to be influential in many people's lives. Along with this feeling came a sense of uneasiness. While I knew my child would be well known, I wasn't sure if it was because he was going to be a great world leader or a serial killer. I know that sounds strange - it felt very strange. I knew I would be a great Mom and do everything in my power to be sure that my child had a positive life outcome but I knew in my heart that no matter what I did, his destiny had been - to a certain extent - pre-determined by powers greater than mine.

It was quite the struggle bringing the idea of a child to fruition. As much as we tried, my wife and I just were not given the right equipment to make it happen naturally ;) We sought the assistance of some fantastic specialists and after many years of physical and emotional stress, we were overjoyed to bring our son into the world. He was born on President's Day and with a name like Jackson Daniel Hamilton, we decided we had a future President on our hands.

Several years ago I read of the vivid dream that Buddha's mother had one evening. One night, while asleep, the Buddha's Mother, Queen Maya, had a dream that she was being carried away by four devas to Lake Anotatta in the Himalayas. After bathing her in the lake, the devas clothed her and anointed her with perfumes and flowers. Soon after, a white elephant, holding a white lotus flower in its trunk, appeared and went round her three times, entering her womb through her right side. When the queen awoke she knew she had been delivered an important message, as the elephant is a symbol of greatness. According to Buddhist tradition, the Buddha-to-be was residing as a Bodhisattva, in the Tusita heaven, and decided to take the shape of a white elephant to be reborn on Earth for the last time.

Now, I'm no Virgin Mary or Queen Maya - far from it - but this story resonated with me. By the time I read the story of Buddha's Mother, we had received Jackson's diagnosis. We were still learning about Fragile X but I knew enough at the time to know that we did not, in fact, have a future president on our hands. We love our son and have very high hopes for him, but a serious political career is not one of them. 

Over the years I have felt more and more connected to this story and validated in my odd, youthful premonition. Jackson is the most amazing human being I have ever known. Sitting in the lobby yesterday at the Community Center, I watched through the glass as he had his private swimming lesson and I broke down into tears. Watching the pure joy on his face, knowing we are giving him every opportunity to experience the world, watching how hard he was working and loving every minute of it was just emotionally overwhelming.  I couldn't be more proud to be someone's Mom. 

There are lots of babies around these days. My brother and his wife just welcomed their first child, my best friend is expecting her first in October. We tried desperately to expand our family over the years with no success. With each pregnancy or birth announcement there comes a bitter sweet twinge of jealousy. Don't get me wrong - I am so happy that the ones I love get to experience this crazy roller coaster called parenthood - but until recently I still very much wanted it to be our turn again. 

After watching our amazing son in the pool yesterday and seeing how profoundly he has affected so many lives in the first 6 short years that he has been on this earth - I know now, without a shadow of a doubt, that everything is exactly as it should be.  

I am content with my gifts. 

Winning the War

As I rang in 2015, I made some promises to myself. NOT resolutions - promises. I promised myself that I would make healthy choices, take time to take care of ME, do more of what I loved, and challenge myself to be a better human being.

I am a woman. I am a Fragile X pre-mutation carrier. I am a Mom of a child with special needs. It has been easy to fall back on some of these facts and say…"I don't have time to work out", "I don't have the energy to work out", "I don't have enough money to buy all organic foods", "My depression/anxiety prevent me from doing x-y-z", "My metabolism is changing and I'm fighting a losing battle." I decided to silence that negative inner monologue and take the steps I knew I needed to in order to be a happier, healthier Mama.


Santa Claus was privy to my motivation to make some life changes and was kind enough to bring me the Focus T25 workout program for Christmas. I have been working out 25 minutes a day for 5 days a week for almost 5 weeks now. I have also challenged myself to start practicing Bikram yoga once a week. Most days I love getting my workout in as soon as I can. Some days I don't feel like doing it at all - but I do. I am keeping these promises to myself.




I have done, and will continue to do, a lot of work on my emotional relationship with food. It isn't easy to dig deep into your own psyche and ask the difficult questions. Emotions can be icky and often aren't easy to identify and label, much less accept and acknowledge. This is an emotional journey as much as a physical one.

Like many women, I am plagued with a poor body image. I hate my body. I don't like looking at it. I feel very disconnected from it most of the time. In my head, I'm a cute little petite thing that looks great in any outfit I try on. The mirror tells a different story. As I get older and continue to carry extra weight, I am at risk for developing a whole host of conditions: high blood pressure, diabetes, heart disease, etc. Not only will the choices I make affect my health, they will affect my family's well-being. Even if I didn't have the strength to make some positive changes for myself, I knew I had to make them for my wife and son. They deserve the best Mama I can be and if I am sick or gone I have failed them.

So I am doing this. Taking care of myself. I have been surprised to find that I can eat what I love and feel great about my choices. Getting into a routine has been easier than I imagined. I LOVE Bikram yoga and despite what I had built up in my head, I do not look like a complete moron while doing it and no one has laughed at me! There will be challenges and set backs. I actually gained a pound this week - BOO! But I will maintain my focus and keep the big picture in mind. I am so fortunate to have the support of my family and friends and could not do any of this without them. Together we will win this war!

Happy Holidays?

It's the most hyper-aroused time of the year

With the food really smelling

And everyone yelling so cover your ears

It's the most hyper-aroused time of the year

It's the crap-crapiest season of all

With those holiday greetings, please don't force eyes meeting

When friends come to call 

It's the crap-crapiest season of all 

OK - I'm not a grinch, really. But when you have a child with special needs, the holidays can be even more stressful than usual. When your child has a sensory processing disorder, or is easily hyper-aroused, like our son, large family gatherings can be a challenge. 

Each year we are getting better at navigating the large family gatherings. We prep with social stories, pictures of people we are going to see, what we will do while we are there, etc. We be sure to have a "FX Survival Kit" with us that contains chewy tubes, a weighted compression vest, highly preferred activities and items. We take lots of breaks, go for walks, and do heavy work to help keep the hyper-arousal at bay. But if I'm being completely honest…I feel like I have just as hard a time as my son sometimes. I surely have more anxiety and stress leading up to the events than he does and I wish I was better at giving myself the tools (and permission) to relax and enjoy these times instead of dreading them. 

We are all about family - they are our support system and our biggest fans. You have a short-hand with these people that raised you and you grew up with that no one else could possibly understand. If you are in my family, we even have a secret language! I am extremely close with my parents and my brother. I consider my Mom my best friend and we talk on the phone several times a day. I realize not everyone has, or would even want this type of relationship with their mother, but it is all that I know and I wouldn't have it any other way. That being said…it can make navigating the holidays difficult now that I have married into a family much larger than my own. A family with different traditions but with the same emphasis on spending time together as a family during the holiday season. I often consider it both a blessing and a curse that both mine and my wife's families are in the same city as this makes logistics on these big days quite complicated. Everyone wants to be together on THE DAY and now that us kids are older, getting married, and starting families of our own it makes it near impossible to get everyone in the same place at the same time for a length of time that is equal to that which you are spending with the other side of the family so no feelings get hurt. And God forbid we suggest all being in the same place at the same time! I am doing my best to teach my 5 year old the importance of sharing, but what example are we setting if we can't all be in the same place at the same time and share the affections and attentions of our loved ones? It's enough for me to just throw my hands up and cancel Christmas. 

But I won't. Because these traditions are important. Family is important. Compromises will be made. Feelings will be hurt. But we will find a way to make it all work. I am truly thankful for all of my family - biological, in-laws, chosen friends, FX family, etc. We will focus on all of these positive relationships and celebrate them during this magical season. 

Raising Awareness

The internet is all a flurry with ALS Ice Bucket Challenge videos and I couldn't be more thrilled. Not only has this innovative campaign worked to raise awareness for this devastating neurodegenerative disease, but the donations are flooding in which will enable scientists to continue the much needed research to develop better treatments, methods of detection, and ultimately a cure for ALS. The campaign has moved me to learn more and to donate to this cause. If you have not had a chance to read up on the disease, here are a few links I suggest you check out:

The ALS Association www.alsa.org
ALS Therapy Development Network www.als.net

A large part of my life has been dedicated to raising awareness for a number of causes that are near and dear to my heart. Needless to say, raising awareness about Fragile X and it's associated disorders has become one of my life's missions. This past weekend, The Fragile X Resource Center of Missouri held our 8th Annual "Fragile, Not Broken Walk for Knowledge." After months of preparation and countless hours of volunteering by a small army, I am happy to say that our event was a smashing success! The purpose of the event is three-fold: to raise awareness about Fragile X and it's associated disorders, to raise funds so that our small, volunteer-run non-profit organization can continue to provide educational events and opportunities to local families affected by Fragile X Disorders, and to provide a fun-filled afternoon for our kids and families. 

Every year I am humbled by the outpouring of support by our family and friends. From those that braved the heat to walk with Team Jackson, to individuals that made donations to our team, I am truly grateful. The Fragile X Resource Center of Missouri has had such a positive impact in our lives and provides support to our family though social events, educational events, scholarships, and the camaraderie of a second "family" of amazing individuals that we would be truly lost without. 

Jackson was diagnosed with Fragile X Syndrome just before his second birthday. Before that time, we had never heard of it. Jackson had experienced developmental delays from an early age, missing many milestones as an infant and toddler. Being the anal-retentive control freak that I am, I was constantly referencing baby books and expressing concern when the developmental "window" for this milestone or that came and went with no sign of progress. Waiting patiently while many told us, "He's a boy. Boys just develop more slowly." In my gut I knew it was more than just that. Our pediatrician is amazing and from the time Jackson was about 6 months of age, she listened to our concerns and validated our feelings. She kept a close eye on Jackson, often bringing him back more frequently than recommended and urging us to get evaluations for various therapies and early intervention services around the time he turned one. While he didn't qualify for Missouri First Steps (our state's early intervention program) at his initial evaluation - he was not at least 50% delayed in multiple areas - we began private Occupational Therapy and Physical Therapy for him and payed out of pocket because we understood the importance of addressing these delays sooner rather than later. 


At age 14 months, Jackson was showing little to no signs of speech. He was barely babbling. We paid privately for an evaluation by a Speech Language Pathologist who strongly encouraged us to request a second evaluation by the people at Missouri First Steps as he should surely qualify now. After the second evaluation, he qualified for OT, PT, and Developmental Therapy in-home at no cost to us. By this time, our pediatrician had mentioned Autism Spectrum Disorder on more than one occasion and referred us to a neurologist for further evaluation. After a terrible experience with the first neurologist (that is a whole blog post in and of itself), our pediatrician strongly urged us to complete some genetic testing. 

On the evening of Monday, January 3, 2011, our pediatrician gave me the results of the genetic testing by phone… Jackson had Fragile X Syndrome. I had done some reading up on it as I knew what he was being tested for and wanted to prepare myself for the possible results. Nothing can prepare you for hearing that your precious child has a genetic condition - that you passed on to him - that affects the way his brain develops and functions. A condition for which there is no cure. A disability which affects his cognitive functioning resulting in a lifetime of struggles and potential hardships. A condition that not only has implications on how your child will navigate through this world, but has reproductive implications as well. Shanon and I were already in the process of trying to expand our family when we received this news. I hold the belief that everything happens for a reason and we received that phone call at precisely the time we were supposed to. In one fell swoop the hopes and dreams we had for our son AND our vision of a big, happy family were crushed - at least that is how I felt in the moment. For those reasons, and many more, Jackson's doctor and I sat on the phone crying with one another for what seemed like an eternity.

I'm not one to sit back and sulk. I'm more of a take-the-bull-by-the-horns kinda girl. Shanon and I immediately began researching Fragile X - careful not to give too much weight to any horror stories we may have come across on the internet. For us this diagnosis actually came as a bit of relief. We were relieved to know exactly what was causing our son's delays and we could move forward armed with that knowledge to give our son the best supports possible. Jackson hadn't changed. He was still our amazingly adorable blue-eyed devil with a wicked sense of humor and a smile that could melt your heart. We shared Jackson's diagnosis with everyone we knew and low and behold, our OT had another client with FX. She gave me her phone number and ultimately got us in touch with the Fragile X Resource Center of Missouri. If we were meant to be dealt this hand - and I believe wholeheartedly we were - we couldn't have landed in a better community. We have a large and active support network of families living with Fragile X Disorders here in the St. Louis area with first-hand knowledge of living the Fragile X way for more than 20 years. We are also just a few short hours from one of the worlds foremost experts on the treatment and management of symptoms related to Fragile X Syndrome, Dr. Elizabeth Berry-Kravis. 

When I think back over the last three and a half years since Jackson's diagnosis, I am filled with emotions. I have moved through the 5 stages of grief a few times over. I have accepted the mantle of advocate and activist and will continue to do all I can to raise awareness so that we may someday have more targeted treatments, more funding for research, a larger presence in the media, and so that my son is able to reach his full potential. 

I just wish I had thought of that damed ice bucket thing. 


      

Let's Do This!

Hey - that's me!

Hello world-wide inter webs! My name is Sara Jane and I have started this blog for many reasons. I have a lot knocking around in this noggin and could use as many creative outlets as possible to set my musings free. I love to craft, create, design, emote, advocate, organize, educate, collaborate, lead…you get the idea, right? Hence, Sara Jane of All Trades. So, this blog will likely be a bit of everything and may seem to be a bit scattered at times, but that is who I am. 

Our amazing son, Jackson             

I consider myself an amazingly lucky girl. I am married to the love of my life and we have the most amazing son who just so happens to have Fragile X Syndrome. Fragile what? I know, I had never heard of it until we received his diagnosis several years back. But over the years we have learned so much and met so many amazing people living "the Fragile X way" that we are well on our way to being experts and if you choose to follow this blog, you might just find yourself on that path as well. For now, if you would like to learn a bit more about Fragile X, feel free to visit the National Fragile X Foundation's website for tons of resources and information - www.fragilex.org.

My partner-in-crime for the last 10 years, Shanon 

My formal education is in Theatre and Education and I still have a deep passion for both. I have spent time professionally in sales, marketing, non-profit management, and working in homes and schools supporting children with special needs. I am currently a stay-at-home mom where my talents are poured into visual schedules, developing routines, coordinating with our son's education team, juggling the schedules of our busy family, and tackling mountains of dishes and laundry on a weekly basis. Glamorous, right?  

My two heroes :) 

I am eternally grateful to my wife for working her tail off so that I can spend this precious time with our son. Without her, and the support of a great network of family and friends, we would all likely be headed to the madhouse sooner rather than later. I am also thankful that most days I have just enough time left over to be creative in some way. So join me on this crazy journey, will you? I can't promise I will write with any regularity, but I'm hoping that when I do, there will be at least a little nugget of information, insight, or inspiration that you can connect with.