Halloween Begins

The Race Against Time

Lately I have been thinking a lot about what it means to have mental strength. The mental toughness to keep going.

I recently ran my first half marathon. I had fully intended to spend my summer and fall training, but life got in the way. Our wonderful night nurse who had been with us since William came home with his trach and ventilator moved to be closer to family. I assumed the role of night nurse 7 nights a week. So my training ended except for my long runs on Saturdays (thanks to my awesome husband).

On race day I found myself standing in the corral waiting to start and fighting back tears. I hadn't  slept in my bed in 45 days. I was mentally and physically tired and about to run 13.1 miles. I snapped myself out of my pity party and decided I started this goal and I was going to finish it (even if I had to walk a little). 

The weekend after my half marathon, I had the amazing privilege to attend the Global Genes Summit in Huntington Beach, CA. I found my self surrounded by the most inspiring people imaginable. At the presentations of Champions of Hope Awards I was in awe of the mental toughness, kindness, humanity and overall perseverance in the room. The awards stage was full of legends in the world of rare disease. I found myself thinking about the mental strength I see in all of our MTM children and families. The strength to keep going despite the pain, the suffering and the hardships.

Below is a video clip of Alison Frase receiving the Global Genes Champion of Hope Award for Patient Advocacy. I love the term Champion of Hope. A champion is a victor in a challenge and there is amazing power in hope in the world of rare diseases.

I have often thought about our journey as a long distance race. A race that we didn't train for, doesn't have a course map, has an unknown distance and too many hills to count. Despite our difficult course our community/ Our Team is awesome! Our only opponent is MTM. We race against time that we fear our children do not have. Throughout our race we have learned a valuable strategy from our pace leaders. Perseverance. Perseverance is our strategy in our race against MTM and we are going to crush it.

Tomorrow is the Chicago Marathon and five amazing individuals are running to raise awareness and funds for medical research for Myotubular Myopathy. Collectively they have raised over $10,000 dollars and the donations continue to come in.
https://www.crowdrise.com/2015Will-CureTeam

A special Thank You to all of the runners in the Fox Valley Marathon and Brooklyn Half Marathon. You are an inspiration.

* Chicago Marathon Pictures coming soon!

Trampoline and Planes

The kids have the day off of school today for President's Day. Juliet headed out to an open gym at gymnastics, so I asked William what he would like to do. He used his talker to communicate that he wanted to watch Planes on the trampoline. It took some interesting navigating on his talker to put those two together.

Happy Valentines Day!

We may have spoiled the kids with a trampoline and new books! 

Snow Fun

Over the weekend the weather was warmer so we got out of the house! We went to lunch at Potbelly's and came home and played outside. William had a blast! He was all smiles as he drove his power chair around the driveway.

Physical Therapy Fun

Below is a video of William working on some little sit-ups.  I love watching the small smile on his face in this video! I can't help but smile too. 

Cosmic Bowling. Whistons and McNamaras 11-22-2014

Sunday Funday

November 9, 2014.  Sunday Funday brings us to Ju Rin for some scallops. 

We also worked on some school art projects.

School Pictures 2014

This week I received William's and Juliet's school pictures. School pictures are always a fun surprise.  You get your child all ready for picture day and wait for the results...

When I opened William's school picture packet I was overwhelmed with happy tears and a memory of a conversation that we had one of William's NICU doctors came rushing back to me.

As any parent would be, we were full of questions in the beginning and were terrified for what the future may hold for our son.  We expressed that we were worried that our son would not be in "the class" - I think were the words we used. We were trying to discuss Williams's short life expectancy. The doctor began to assure us that what we were looking at does not affect his mental capacity and did not engage in the life expectancy discussion. We did not have a diagnosis, so life expectancy was something that was unknown and extremely frightening,

I recently had dinner with some MTM mothers and the same topic came up during our conversations. Most had similar stories of doctors telling them the best we could do was to "enjoy your baby". As I sat and listened, I thanked God for our NICU/PICU doctors and nurses and our amazing pediatrician who never gave up on William or our family. One day shortly after we received William's diagnosis I was in his pediatrician's office and again brought up the topic of life expectancy. She stopped me mid-sentence and said that we were going to be proactive and aggressively attack even the slightest cold. She gave me her cell phone and told me I could call her anytime.

Thanks to all of these wonderful, caring physicians, I have school pictures of William. They collectively saved his life and gave him and us a chance. I will forever be grateful.

William's 3 year preschool picture 2014-2015

William's Preschool Class 2014-2015

Juliet's Kindergarten Picture 2014-2015 

Halloween 2014

Halloween 2014!

This year our kids started discussing Halloween costumes in September. Juliet wanted to be Elsa from Frozen and William picked out Buzz Lightyear with RC!

For those of you not familiar with Toy Story. RC is the Race Car, probably most know from the scene in the first movie when Buzz and Woody are chasing the moving truck. (see pictures below.)

On one of William's sick days in September, William and his nurse sat down and did a internet search for a cool wheelchair Halloween costume. And they found it! They found a little boy whose parents made him a RC.  http://ideas.coolest-homemade-costumes.com/2012/11/04/coolest-homemade-buzz-lightyear-rc-wheelchair-costume/

William was so excited when he showed me the costume he picked out. I on the other hand was a little intimidated, but how could I say no an excited little boy.  So I said why not! I can make RC for William!!

Included are some pictures of my progress. I used foam board to make RC; it comes in huge sheets in the insulation section of Home Depot, a hot glue gun with foam glue, my carving tool of choice was an electric knife (for family reading this blog...I could use a new electric knife for Christmas) and pool noodles for the grill!

Here are some picture of William in his Halloween costume at his preschool! They had a parade outside and William was the line leader! I think he was excited and proud of his cool costume, which makes all the hard work worth it! (Who am I kidding, I loved making RC for him!)