Memorial Day

Happy Belated Memorial Day!

We spent most of the weekend eating, swimming and playing at my parents house! I forgot my camera (grr) so I have some cell phone pics.

Will LOVES getting in the pool, playing baseball in the pool and attempting to kick his legs and swim. I'm guessing that beautiful blond hair is going to be white by July 4th!

Getting ready for the pool.

Ice cream sandwich break.

Making 'Smores

And eating 'Smores

Thank you to all the brave service men and women - like my grandpa, Uncle Sandy and father-in-law who have served and protected our country. 

What I've Learned from Will

Gymnastics, music class and puppet shows...

I am so thankful for my reduced work week schedule. In the past few weeks I've been able to watch a full gymnastics class, participate in a music class and watch him enjoy part of a puppet show this morning at school.

What I've learned about Will by watching Will...

Gymnastics - he is a class clown. They all wait in line for their turn and after one of Will's turns he decided to hide under a table. The teacher, Mr. Glass, played right into his little hand and started looking for Will. He burst out from under the table and yelled, "here I am Mista Glass" - everyone started laughing and from there all the children decided to hide under the table after their turn.

Back bend with Mr. Glass

Music class - he (and his daddy) love to move and groove to music. When Ms. Christi gets out the musical instruments I think he was the first person off the ground to go pick one out. That's actually really impressive because it usually takes him quite a bit of time to get off the ground. BTW - Ms. Christi is starting her own music class, http://www.crescendofamilymusic.com/, and I HIGHLY recommend trying her demo class on June 2! Will loves her classes and it's fun for parents too.

Ok, so this isn't a picture of music class with Ms. Christi (we have too much fun to take pictures), but of Will singing at the Christmas program at school. He is on the first row by Ms. Maria.

Puppet Shows - he isn't afraid of anything. The story was Sleeping Beauty. Why does my child laugh when the mean which comes on stage? Will isn't afraid of much - witches, doctors and needles scare most of us but Will just saunters right up to the counter.

Mr. Fearless in the hospital back in March.

Will has taught me so much about himself and myself. I know in my heart that he is teaching me so much more than I could have imagined. He is the reason why I know I CAN do this, even though I'd much much rather not. Thank you little bear.

Gift of Time

I used to think nothing REALLY bad would ever happen to me or anyone in my family. Then slowly things start happening and you don't realize it until you sit down and think about it.

Some days I feel extraordinarily lucky to KNOW that Will isn't going to be here for forever. We've been given the bittersweet gift of time. Time to get to know Will, time to say goodbye, time to make memories, time to get angry, time to laugh...

I watched this video today and realized that these families didn't have that luxury.
http://www.youtube.com/watch?v=DebhWD6ljZs&noredirect=1

Nothing on my phone or your phone is that important to take away the gift of time to another family. If you notice a slower response time on my end, you'll know why.

Boots

These boots are NOT made for walking...

We went a few weeks ago to a new orthodics company, Hope Orthodics. I really like them a lot and it's worth the trip to The Woodlands. The orthopedist along with Will's physical therapist recommended doing a custom leg brace instead of one off the shelf.

We went yesterday to pick them up and Will really seemed to like the design we picked out - sports theme - with football, baseball, baseball gloves, soccer balls etc.

After the appointment, we met up my mom, dad, sisters and Will's cousins for dinner at Fuddruckers and he seemed to be walking really well in them. He had a blast in the arcade area driving cars and goofing off. He ate a great dinner too. Car ride home was full of chatter about the balls on his boots.

Got home and his ankle bones were red/pink. They orthopedist told me that's normal for 20 minutes, but it should not be red after about 20 minutes. Well, they were still pink this morning. Will actually wanted to put them on this morning, but after getting them on it was not pretty. He actually had tears coming down his face and wouldn't walk anywhere.

Luckily, we had an appointment with Will's new PT, Ms. Lauri and she said, no way. Take them off. So, we're back to the old nasty boots till at least next Thursday when we're going back to get them fixed. That was the first mutually agreeable available appointment. It's rather difficult to get up to The Woodlands where this orthodics place is in the middle of the day.

After we took them off this morning Will perked up and seemed to be a lot happier. I'll be curious to see his ankles tonight if they are still pink.

Will sitting in a bumbo in the Orthodics room. It was a tight squeeze and he thought it was hilarious.

New boots!

It's a much harder plastic, so I'm hoping it can just be stretched out or more padding added to protect his little "feet-sies"

TGIF - Ranch Style

A few weekends ago we went to visit our friends the Sullivan's to celebrate their sweet daughter Anna's birthday. She and Will are just two weeks apart. 

I just thought I'd post some fun pictures from our visit. Living in different cities makes it tricky to visit, but I just love it when we all get together. Fun, easy and enjoyable.

I wish I had more pictures, but I neglected to get it out enough. I know the kids had a blast and they were so stinking cute in the process.

On the "Mule" with Tahra, Caroline, Anna, Will, Me and AJ behind the wheel.

Driving off around the lake. The property next door had exotic animals and so we saw a couple of zebras running around!

Anna gave Will his birthday present while we were there and he rarely goes a day without wearing some element of his dress up clothes now. (It took all I had not to burst out crying when they sang Happy Birthday to him)

Seeing these guys reminds me of a LONG AGO trip to Galveston when Will was just three months old. It was our first road trip and the first time he slept through the night. Caroline wasn't even born yet!

At the beach

Anna the now 3 year old and Will.

Sweetie Anna

Chilling on the porch

Happy Weekend!

Mother's Day & Vacation

Happy Mother's Day...

Ok, so I'm a few days late, but we got back from vacation and it's been nuts since trying to get back into the swing of things and really not wanting to touch a computer.

I had a wonderful Mother's Day and the gift Will made at school was precious.

I love butterflies and him so it's a great match. We spent Sunday at my parents’ house with my mom/dad and sisters and their families.

I was chatting with a client Monday and she asked if I liked being a mom. I am honestly in love with being a mom. It's a rewarding, challenging, heart breaking, joyous and A LOT of work, but I couldn't imagine anything else.

Our little doctor

One thing I'm learning in a book I'm reading ("More than a Mom: Parenting a Child with Special Needs") is that I can't let kids take over who I am - I am who I am because of them, but that doesn't just make me just "Will's mom" or "Neil's wife" - in order for our lives to be balanced, I have to be "Lori" as well. Reading, getting a pedicure or even work makes me remember that I'm my own person and I have to make time to keep me me. But that I am forever changed because of my little angel.

It's an interesting balance and most days, like other normal moms, the scales tip towards our kids and husbands, house work, work etc. I just have to remember to savor and work towards securing a few glorious moments of "me" too.

Happy Mother's Day to all of you. A special prayer for those mom's who have lost a baby, can't have a baby, didn't have a baby and for those children who have lost their mom. Mother's Day can be quite bittersweet for so many.

Vacation...

Neil and I left for Cozumel on Sunday, May 6 and got back Friday the 11. It was a glorious escape from reality. We must have picked a stellar week to go because the hotel we stayed at was not anywhere near full capacity. Not only is the hotel's beach private, but because there were so few people there, Neil and I virtually had a private beach.

The only person we would see for hours was Edwin, our "cabana boy" haha. Edwin earned his keep because we picked a spot about as remote as you could and settled in with Sol, nachos, books and naps on the beach.

I thought it would be hard for me to relax, but it wasn't. I wasn't worried about Will (much). We rented a jeep and cruised around the island (very safe), went to town for dinner a couple of nights (thanks Ken & Janae for the Pepe's recommendation - so delicious we went twice).

I think it was just what Neil and I needed to recharge our batteries (if only it was that simple for Will). We didn't talk that much about Will's health, or what's to come. We just focused on enjoying ourselves and taking a break from all the crap. We also brainstormed baby names which was a fun, lighthearted discussion - a nice departure from all the medical conversations we have. No, we're not pregnant. LOL.

All in all, the vacation was amazing and Will was in one piece when we got home. Kudos to my parent's and Neil's parents for their vigilant and watchful eye while we were gone. I'm sure neither of them wanted Will to get sick on their watch and he didn't! :-)

In fact, I think he had more fun with them than he ever has had with us! Homecoming was incredible though. Will jumped up off the couch (as much as his little body can move) and I don't think he left my side the entire weekend. My little shadow was back and I loved every minute of it.

During our vacation I thought so many times to myself, "What am I going to do without him?" - it was like a small little hole in my heart started forming because I missed him (compared to the gaping hole that's already there). This time I got to come home and hold him, see him and play with him and eased that hole from growing. It crushes my soul to know that one day, I won't come home to him. Until then, we'll just keep keepin' on and enjoy our little bear.

Now, does anyone know where I can get a Houston cabana boy??  

R&R for the Fight of a Lifetime

I'm going to be taking a little break from life, blogging and work soon aka vacation!. I haven't posted much lately because I'm not sure what I really want to talk about or say. Muddled emotions and thoughts on so much that I'm not sure how to put into words.

I can't decide if I'm just anxious about leaving Will, but something feels funky about his walking. I think it's probably the leg braces which we still don't have new ones. We go tomorrow morning for an appointment (finally) so I'm hoping that will be a positive and fast moving next step.

I am tired. It seems like every day brings more challenges. Even with the reduced work schedule (which has been a HUGE help) I just feel like in some ways it adds more to the plate. I have more time to worry about Will. I've decided he's not color blind. He sat there and matched about 15 different colors this morning at school. He just needs to focus more and could care less when someone randomly asks him about a color.

I'm ready for a break and am praying that Will can just keep himself out of trouble (aka the hospital) for a few days while we're lounging.

Insert Rocky theme song here... Neil and I are resting our brains, bodies and hearts gearing up for the fight of a lifetime. The fight that never seems to end.