Elijah Will Be Represented at Boston Marathon 2014

Our dear friends the Sperou family in Massachusetts recently asked if we'd be interested in seeing Elijah represented by a runner during the upcoming Boston Marathon in April 2014. Of course we said yes! What a fantastic opportunity, to know that someone has dedicated themselves to running 26.2 miles, thinking about Eli the entire time, working to raise money for children like Eli who are dealing with rare diseases. Kelsey Hoontis, our new superhero, is sponsoring Eli as part of an organization called "Running For Rare Diseases." They recently spoke with Christopher and Laurie Sperou about sponsoring their precious daughter, Shauna, who became a good friend of Eli's during our visit to the Rothmund-Thomsen Syndrome conference in Washington, D.C. Kelsey is one of three (for now) runners who will be representing RTS kids, and I'll tell you honestly, it feels so good to see Eli's syndrome garner more attention. We felt so alone in those early days when we had j


It's here. Eli's big day. Today, Eli turns 7 years old. The feelings and emotions I have for this day are overwhelming. It's been a long, long 7 years, but I can remember this day in 2006 like it was yesterday...and the months to follow. They are etched in my memory with Sharpie...never fading. Some of the memories, honestly, I wish I could erase. The hurtful ones. Some I've written about on this blog, but most I keep hidden. We hosted a birthday party for Eli on Saturday. He invited his entire regular class and his entire special needs class to his party. I began first thing in the day warning Eli that he might not have a lot of kids come. I wanted him to be prepared for the worst. Though Eli was confident his friends would come...I wasn't sure. When party time arrived, five precious kids came to celebrate Eli's birthday. I was relieved and Eli had a marvelous time with those five great kids. That same day, we had a family celebration where we all doted on El

He knows

Last night, Eli asked me if his toes would grow back when he grows up. I had about three seconds to carefully formulate my reply as a knot formed in my throat and I blinked back tears. My reply: no. I immediately heard the distress in Eli's voice. I'm certain he expected a different answer. "You mean I will always have these circle feet?" My reply was a simple yes though I wanted to say much more. Yes and I am so sorry. If I could change it, I'd do whatever it took. If I could give you my feet and toes, I would do it 10,000 times over. Whatever it took. But I didn't offer him a glimpse of hope that he might eventually have plain, ordinary feet. My mom is the one person I know who will never lie. She was the one person I always knew I could count on to tell me the honest truth. If mom says it, it is. If someone was joking with me, mom would never join in the joke. In fact, she'd ruin the fun and put my mind at ease with the truth. I decided well bef

Eli's First Birthday Invitation

It's been an emotional day for me, and it's only 10:00 a.m. We were getting Elijah ready to meet the bus to school, which means grabbing his bottles of formula from the fridge and zipping them up in his backpack. Nurse Melody was at her own home last night, so this was the first time anyone looked in the backpack since yesterday. The first thing I noticed was an envelope on top of the backpack contents. "What is this?" I said, although I suspected right away, and my existence shifted a bit, everything everywhere all at once, the way the world is lit differently during a solar eclipse when the moon bends all the light, and it's orange and lovely and glowing but still essentially the same light. Melissa was standing beside me as I opened the envelope and saw a card with Optimus Prime from the Transformers, and the words "You're Invited" underneath. My hand trembled, and I looked at Melissa. Tears jumped to my eyes, then more, and suddenly I was sobbi

What is going on with that cute kid, you ask.

Easter Picture with a chick that Eli wouldn't actually touch. :) Hello Friends! I am delighted to share with you about Eli's recent progress. We moved! It's a big deal and we didn't really talk about it in our social media because it was pretty stressful and the reason we were moving might have been offensive to some. Let me explain. We moved for two main reasons 1. Eli needed some home modifications. The steep driveway, drop off on the side of the driveway and the layout of the house was not ideal for our sweet kid. 2. We felt that Eli needed to be in a different school. This   was a big deal. It's not that his former school was bad...they just didn't have the resources to care for Eli the way David and I wanted. We wanted him in a regular classroom so he could learn at the same pace as his peers and his old school would not accommodate our request. He was also in a room with a child who was allowed to be aggressive toward other kids and she scared Eli r

Did I Mention He is SMART?

David pulls up to the drugstore to pick up Elijah's prescription. He rolls down his window and says "pick up for Elijah Ramirez." Eli says from the back seat, "roll down my window." David obeys. Eli says out the window "Eli Ramirez, four-one-two-zero dogwood lane sapulpa oklahoma." For those of you who don't know....that's our exact address! What fun for David to get surprised by Elijah's brilliance! Love those boys, Melissa

Sophia's new cell phone

The kind people at Straight Talk sent us a phone to review in support of their sponsorship of Make A Wish. Straight Talk is giving $1 to Make A Wish for every person who demos an LG Straight Talk phone. It only takes one minute at your local Walmart. The phone is awesome. Sophia is becoming a real pro at using her texting, Internet and phone. She's adding contacts and apps. She is 10 years old and is learning the phone easily. It's very intuitive. The service has been perfect with no problems. Please stop by Walmart this Saturday and demo a phone. It's an easy way to give Make A Wish $1.