Father's Day

Father's Day is a day to celebrate the man in your life. Since my own dad has chosen another life other than ours, this day has very new meaning for me. I had an incredible childhood and have hundreds of amazing memories of my dad, but this last year has caused me to step back and reevaluate my life and my beliefs. Instead of looking at my dad as the example of the man I want to marry and be the father to my kids, I now look at how the man I have married is so much more. Our life is not easy and Rob's job as a dad is filled with constant trials. Raising three kids with TSC is filled with challenge after challenge and Rob takes each day as it comes. He teaches our kids compassion and the meaning of unconditional love. He shows them what real faith is and to live a life of morals, thinking about others and how your actions affect those around you. So when Rob said he wanted to go see the space shuttle Endeavour for Father's Day we went!

 

It was a great day filled with exploration and adventure. We were able to celebrate Rob and witness a part of history. Who knows what the next year will hold, but I am so grateful that God chose Rob to be the dad to our kiddos and he chose me to be his wife!

 

6th Grade Promotion, June 12th

When Ry was diagnosed at 18 months old, we had no idea what the future held for her. We cried out of fear of the unknown and uncertainty of the future. Over the years there have been many ups and downs and it has not been an easy journey, but I am so proud of my girl. She has finished out her elementary school years with a love of life, desire to learn, and understanding of what hard work is. I even received this email from her teacher awhile back when she had to miss a couple days to go to her great-grandpa's funeral:

To say that Rob and I are so proud of the young lady she is becoming would be an understatement. Don't get me wrong, there are definitely rough days, but Ry has a heart of compassion that is beautiful to witness. Having TSC and dealing with her brothers on a daily basis has given Ry maturity beyond her years. She can put up with her brothers pounding on her, hold them while talking them through seizures, be goofy or give a comforting hug when needed, get her own medication and theirs if necessary and be an example of how to battle and win TSC. Gotta admit I am dreading the Junior High years and would freeze time if I could. But for now I am going to celebrate my girl and all her accomplishments. I am also going to find joy in her never ending excitement about promoting the 6th grade and heading into the next phase of her educational journey.

 Ready to leave for promotion

 Bracelet Rob and I gave her

 Ry and her two brothers, who have taught her so much

 At promotion

 Getting a medal for Science Camp

 Just got her certificate

So proud

Modified Atkins

Yesterday we officially began the Modified Atkins diet.  This is a high fat, high protein diet that produces Ketones in the body that have been proven to help control seizures. The terms Modified Atkins and Kenogenic diet have been thrown around the last few years as a good option for Luke.  Since his seizures are uncontrolled with medication and he has the G-tube, Luke is a good candidate.  We opted out of the Kenogenic because of how strict the guideline are.  The Modified Atkins are the same foods without having to measure and restrict everything he eats.  Basically now we just have to monitor the carbs. He is allowed 15 carbs a day and most of those come from veggies and some fruits.

So yesterday morning, Rob and I went from store to store trying to find the carb free products we needed to get the diet going.  First, I would like to clarify that my husband is INCREDIBLE. This journey would be so much more difficult if Rob was not by my side every step of the way.  We really do it TOGETHER!  I ended up going to 7 different stores before finding all the basics I needed.

We tested out a few recipes and some how managed to get through the day. Luke was a champion and once again Rob and I did it TOGETHER!

After two days I am so happy to report that Luke is at the right level of Ketones tonight.  Yesterday he had 10 seizures and today we are down to 3.  Whether it is the diet or he is just having a good day, only time will tell.  I will say that the thought of keeping this up indefinitely, scares me to death.  But the thought of being seizure free seems like it may be within reach for the first time since he was 3 months old.  We will do EVERYTHING and ANYTHING we can do to give our kids the BEST life possible.  I am just so thankful that Rob and I get to do it TOGETHER!

A Sunday Afternoon at Disneyland

Last Sunday, Rob and I decided to start our week off with a quick trip to Disneyland. There are few activities in this world that we are able to truly enjoy as a family. A few years ago we discovered the "special assistance" pass that allows us to go in the exit or use fast pass to go on the rides. This makes it so our boys are able to go on the rides without the long wait.

To see those smiles and know that for a few moments the behavior and the seizures do not matter.  My kids are just being kids and although TSC is ALWAYS in the back of our mind and the fear is ALWAYS there, our life is filled with joy.  No matter what the future holds, I am so grateful for days like these.

Trusting the Unknown (Work Post)

The unknown, is it scary or hopeful?

Five years ago, I made the decision to leave my school sight of the past six years and move to a brand new school, team and principal I didn't know.  I wasn't really happy where I was at, but my currant principal new about my situation with my kids and pretty much left me alone.  I was comfortable and wasn't really looking for a change.  Then I got bumped and was told I had to move.  The next couple weeks I put in transfer requests and interviewed at couple sites in the district.  The day I interviewed for the brand new school, Werner Elementary, and was offered first grade, I also found out I got my spot back where I was at.  I was so torn and the fear of the unknown almost kept me where I was.  My currant principal wanted to change my grade and refused to let me stay in first, so that was my deciding factor to leave.  I thank God daily, he insisted on moving me or I would never have stepped into that unknown.

Opening a new school is an unique experience that few teachers get the privilege of doing.  The school administration, expectations, students, peers and culture is all unknown.  You have teachers from different sites, different areas of expertise, and a fresh perspective.  I should also add that I was fortunate to have another teacher from my site (that was also my good friend), move as well.  The added perk was that she was assigned first grade too, so we were on the same team.  I had some familiarity and support to go along with my unknown.  We had to come together and follow the principal's vision that we were all "stars."  The Werner Stars were born and the mindset that all our students would succeed in life was mandatory.  We have worked hard as a school site to help our students realize how truly special they are and as I saw my first year first graders promote this year, I am so proud of what has been accomplished.

Making that jump was one of the best decisions of my life.  My principal has been beyond supportive.  Not only has she understood and supported me through some of the most difficult times with the kids health, but she has shown me respect, appreciation, and value for what I do.  My first grade team over the last 5 years has had some changes, but every year I have been privileged to teach with an amazing group of teachers.  To put into words how these woman have helped me is impossible.  They have shown me how to become a better teacher, prayed with me, cried with me and rejoiced with me.  They have become much more than peers, but they have become my friends and a part of my extended family.  This last year I had six teachers from Werner walk in the TSC walk-a-thon as well as donations by my principal, the school as a whole, custodians, librarian, and other teachers.  The support is humbling and to think if I had never gone into the unknown, I never would have known these incredible people that God brought into mine and my family's life.

As another school year has come to an end, I am again faced with an unknown. Two of my first grade team (including my good friend since the beginning), are on temporary contracts and still waiting to find out of they have jobs, let alone still be at Werner next year.  Then our principal just announced that she will be getting a promotion and a new principal is coming in.  This has caused me to step back and reflect on what the unknown really is.

You see living with Tuberous Sclerosis, everyday is the unknown.  I am constantly searching for security and assurance that all will be okay.  As changes happen, the not knowing what comes next, can be almost paralyzing.  If I had not stepped into that unknown 5 years ago, my life would be drastically different.  As my peers and I step into another unknown for the 2013-2014 school year, I am forced to once again have faith.  Faith that this is where I need to be and surrounded by the people I need to be surrounded by.  But, I also need to acknowledge and say "thank you!"  Thank you to Ms McIver for taking me as part of her staff 5 years ago, allowing me the experience of helping open up a school, the freedom to take care of my own kids, the support I needed in the classroom and in my own personal life, and the validation I needed to know that I could be a teacher and a mom!  Thank you to my first grade team, who have prayed with me everyday, cried with me when I was in my lowest moments, encouraged me when I was frustrated, and always had my back no matter what obstacle I faced at school or at home.

The unknown, scary? YES but, so HOPEFUL.  There is something so encouraging about knowing that the unknown can take you down incredible roads and help create a better you.