Monday, December 23, 2013

Seven...SEVEN!!

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 Eli.

Despite his Saturday celebrations, Eli woke up this morning ready to celebrate his "real" birthday. I told him he was receiving a shopping spree from his mom and dad and that we'd leave for Wal Mart so he could pick out toys to his heart's desire. (I mean seriously, just because your birthday is two days before Christmas does not mean you shouldn't get the full gift benefit of the anniversary of your birth...I'm sure you all agree.)

Eli was wearing his shoes and the nurse and I toted his back pack full of medical supplies and his walker to Wal Mart. Eli enjoyed walking around the toy department looking at this and that and picking out two new train sets, two new trains, a set of tractors and (a mommy selected) learning toy. The basket was overflowing and Eli was tired and ready to ride. The nurse and I were rearranging and making room for Eli to sit with his haul when an older man approached me, handed me a one hundred dollar bill said Merry Christmas and walked away. My first reaction was "no, no, no," then I said "thank you." And, the man in the green coat was gone. I stood stunned for a few minutes...unsure of what my next move would be. I looked way down the aisle to see the man headed to the grocery department and so I told Eli that a nice man wanted to buy his birthday presents and he needed to say thank you. So, I CHASED the nice man in the green coat. He obviously was unsure about where he was going because he took many turns to end up at a canned food area. I found him and Eli told him thank you and that today was his birthday. The man said, well, it was meant to be. Merry Christmas. And he was gone again.

Earlier as we were walking through the store, I was noticing all of the smiles being sent Eli's way. Eli doesn't acknowledge the looks. I'm unsure if he doesn't notice or he just knows they are his normal. But, I do know that Eli radiates wherever he is. I thought, I'm glad I could bring Eli to Wal Mart today to brighten everyone's day. And then, someone brightened my day. Eli brings out the best in people and I'm honored to be his mom.

So, Eli, here's to another year ahead. Your year as a 7 year old boy. The year you will learn to walk without a walker. The year you will learn to read and master math (that's giving him trouble right now he's telling me). The year you will start to eat by mouth (I continue to tell him how great it is to eat pizza and biscuits and gravy). The year you will brighten the day of countless strangers, unknowingly. I love you my precious son.

Here's some pics of Eli's year:




Melissa

Tuesday, July 23, 2013

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 before Eli's birth that I wanted to be like that for my kids. It was something I really valued about my mom.

So when my 6-year old Eli asked me about the likelihood of his toes growing back. I told him the truth...even though it broke my heart into a million tiny pieces.

The conversation continued as he asked me, "how will I walk?" I told him he will have his cool shoes. He was worried that they won't fit when he grows up. I assured him that he will have new shoes to fit.

I know his little brain worked that conversation over as he drifted off to sleep. I hope one day he will appreciate that I will always tell him the truth. In the meantime, I do hope he doesn't ask me if he is having surgery on August 2nd.

Love!
Melissa


Thursday, April 18, 2013

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 sobbing beyond my control. Sophia ran over to ask Melissa what the card said, and I stumbled into the dining room and wept. After Melissa shared the card with Sophia, she joined me in the dining room and embraced me. I got hold of myself and gave her a kiss, then Melissa left me there to go share the invitation with Eli. He didn't know about it, so it was a wonderful surprise for him.

Sometimes when I'm lying in bed, I allow every inch of my body to feel the covers above and below me, to open my sensation of touch to expand to its full capacity. I experience the strange paradox of feeling both compressed, smaller from head to toe, but also expanded, able to sense more of what's around me than what my body is actually feeling. This is a sensation with which I'm well aware from my time with Elijah. So very often, day to day, you and I allow some of our senses to shut down while one of them -- sight, mostly -- takes command of our attention and beams only the current circumstance into our heads. Often this is a good thing, like when we swerve around a fallen branch when driving; you don't want to be distracted from that single object. But when you can afford to open yourself up to the entirety of your life's story, or to your son's, it's a humbling and overwhelming thing. It buckles your knees, drops your jaw, fills your lungs. It's in these moments when I most fully experience the supernatural, what I believe is the presence of my Creator, although I always pragmatically believe even when life is more mundane.

Put yourself in my shoes. One moment, I was running around trying to fulfill Eli's routine, as well as Sophia's and my own. The next moment, the very next one, I'm remembering the time when Eli was born and I wondered if anyone would ever play with him, or appreciate him, or love him like I did. I wondered if he'd speak sentences, or taste food, or listen to music. I worried that he'd been in constant pain, or sit quietly and watch the world leave him behind, struggling with loneliness and anger and confusion. I braced myself for the possibility that he would never forgive me for making him be born sick, and that I would never forgive God for the same thing. (We recently learned that doctors in Europe will be featuring Elijah's case in a textbook, because he suffers from a rare version of one of the world's most rare diseases. It's one thing to suspect, and quite another to see it in print.)

To feel all that massive, heavy past superimpose upon the present day, where Elijah is RUNNING down the halls of his school, learning to add and subtract, singing the songs from Wreck-It Ralph, cracking jokes, and begging for one more minute of toy time before getting into bed... It's a compacting feeling, almost crushing. Even opening yourself up to all the good things in life is a spiritually draining task, and it's even more impressive when you never saw it coming. There I was, just pretending like it was completely normal for Elijah to see 20/40 with glassess and use his hearing aid to hear all the way across the house, to ride a big yellow school bus all alone and never feel scared in the least, to never get angry, to never display jealousy, to always say "thank you" for even the smallest of gifts. To say "thank you" when the nurse has just pulled out the needle, and he's terrified and unsure how must longer this will take. To have a spirit like that, to be a person like that.

Elijah received an invitation to a birthday party last year, from a little girl in his class that thinks he's fantastic. We met her because her sister is Sophia's friend, and I know the parents very well. But now, Eli has gotten a birthday invitation from a kid I've never met. His parents don't know me, either. The only connection is the one that Eli built from scratch at his new school. He walked into the classroom, participated in the learning and the fun, spoke when he was spoken to, and showed his peers how much he appreciated them. And when it was over, one of his friends asked him to come take part in a special day where Eli's friendship would be rewarded with food, games, prizes, and apparently a few laps around a go-cart track. Don't forget, Elijah has only recently been given the height he needs to ride go-carts, thanks to new prosthetics from Sabolich in OKC. Nothing, nothing, nothing, nothing, nothing in Eli's life can be taken for granted... but we still do it, all the time.

I envy the moms and dads of children with special situations, who never doubt that their kids will achieve just as much as anybody else in life, and when these triumphs occur, the parents cock their heads and say, "Well, what did you expect?" Then they go on with the routine of helping the kid rise above any and all limitations. I envy them, but I could never be like that. My doubts and fears are something I've had to overcome, and they drive me to worry about Eli, to investigate all the resources and possibilities, to navigate around the pitfalls even when they aren't that close. (You can be sure I'd never have made it this far without the organizational genius of my wife, Melissa, and the calming stability of my daughter, Sophia.) And I admit, even after all the success, even after all the hard work Elijah has performed on his own behalf to achieve what he must somehow have known he would one day achieve, I still had doubts. Even though I know everyone loves my boy, I wondered how long we'd wait for the first party invitation.

The answer was: kindergarden. Not too shabby.

Saturday, March 23, 2013

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 really, really badly. So badly, in fact, that he stopped loving school. We certainly don't blame the child. She is non-verbal. But, to allow her to "bully" Eli and the school administration to blow off our concerns was not acceptable to us. He didn't want to go any more. So, we moved!

I'm so happy to report that we made the right decision.  Eli's new school is spectacular. He is loved and adored and the special teacher TOLD US that Eli needed to be in the regular classroom more. It was like the third day he was there so we hadn't really told them yet about our high expectations....but they blew them out of the water without even knowing them. His teachers (both regular class and special class) are the most amazing human beings and teachers. Eli LOVES going to school again. Eli is teaching his peers about accepting people the way they are and how to be compassionate and patient.
The first day we went  for a tour of the school, the principal came out to greet David and me with hugs then she sat down on the floor in front of Eli and started talking to him about swimming with a dolphin in Hawaii....because she had read his blog! Then the special teacher Amy comes around the corner and the almost first thing out of her mouth is "I saw you swimming with a dolphin, Eli." We knew, at that very second, we had found the perfect place for Eli's education. What an amazing group of educators! Thanks Jenks West Elementary!!

At his new school, they did some testing on him to qualify him for special education services. They discovered that his social and emotional level is at 10 years 1 month.  That means that he is as socially and emotionally mature as his older sister. And, I believe it! It's not necessarily a good thing that the circumstances of Eli's life have caused him to mature and deal with things beyond his age, but it makes him such an amazing human.
Eli's new Physical Therapist at school told us that we should be sharing Eli with more people because he is such a brightener. It is so true. If you haven't had the pleasure of meeting Eli in person, you are really missing out.

We are in the process of getting Eli new "shoes." In fact, we are using a brand new prosthetics clinic in OKC called Scott Sabolich Prosthetics and Research. Again, we feel like we have hit the jackpot. Soon, I'll be able to post a picture of Elijah wearing some new legs .
We love you all!
Melissa