Yeah, what she said.

"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."

-Author Unknown

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Can I get an amen?

Loads of people have told me how strong I must be, how God knew I could handle this or that God knows what we can all handle. Maybe. I do believe that in the end, my life was designed by God for a purpose, and Will is a part of all of that.

These people who say these things are well meaning, and I'm never upset with them. But I want them to know.....I wasn't given Will because I was strong, but I was made stronger by the journey, and only by the grace of God.

In Defense of Hope

I wanted to share this post at Hopeful Parents from over a month ago. The writer puts it so much more eloquently than I can, but I found myself nodding my head in agreement the entire time I read it.

Having a child with autism as well as a child who is from a different cultural background sometimes draws curious questions and looks. I know this. I'm aware of it.

The bottom line is that my response is what really matters here. I can choose to teach my girls kindness and grace, or I can retort with a not-so-nice look or comment. Our family chooses to hope for the best in others' intentions. That is not to say that my feelings don't get hurt at times by comments or that I can always let the stares roll off of my back so easily. (I am human, after all!) Nor do I think less of anyone who chooses to show the hurt feelings differently.

However, I am reminded that my girls are watching my every move and are learning from me. Therefore, I choose HOPE. Sometimes, I pray. For me, it is better than the alternative.

New toys! Hooray!

The fiscal year for a small fund that we get every year has just started over.

We are adding to our sensory room and using the rest to pay for Will's awesome, super duper PROMPT therapist.

We are getting this:

And this:

And this one:

What are your kids' favorite swings? Do tell. I might just change my mind. ;)

The table that Tripp Trapp built

Okay, confession time. I have only one child with special needs. Only one who needed a "special" chair at the dinner table.

We have three.

When Will got his - paid for conveniently by another funding source - my oldest wanted it. Sat in it. ALL the time.

She got a Hipposmile for her birthday...similar model, different manufacturer. The quality is a bit less, but it was $100+ cheaper.

My littlest came home. We decided to use some of her birthday money and money left from a shower for her own Tripp Trapp.

Check them out. Will doesn't need a ton of help with positioning, but he does have low tone and needed some place to put his feet to "ground him" while eating. We LOVE ours.

Another Miracle League game this weekend

Will plays on a team in the Miracle League. If you aren't familiar with this program, check it out...I'd suggest googling to see if there is a program in your area. I had no idea until a friend mentioned it to me.

My sister in law and I decided to enroll our kids and try it out, and every weekend, I am reminded of why I'm glad I did.

Will loves it. Our area recently renovated the field so that everything is accessible and easy for the kids. This past weekend I got to be his buddy since dad, his usual buddy, was working. It was so much fun! I'm trying to teach Will to be more independent of us, so I had him hit off a tee. He barely dinked it, but the point was that he did it himself!

Love the Child Life department!

No WFMW this week. I am so tired.

The super duper improved version of Will now comes complete with a set of ear tubes. ;)

Our saving grace today was the Child Life department at the hospital. Every other surgery has consisted of us telling the anesthesiologist to pick whatever "flavor" of scented air they put in the mask. Will never cared. Today, the woman came in and let him smell them and pick one...all the while, I'm thinking...whatever! He still doesn't care.

However, she rubbed the scent he chose in a mask and had him "smell" it. This way, he got to feel the mask and put it on while he smelled it. Apparently I need to be a little less cynical.

Worked like a charm. He put the mask on with little to no fighting. A+ for the Child Life department and a big win for us.

Lose the Training Wheels

I saw a billboard for this today. Lose the Training Wheels is coming to our area and many others across the US during the summer. Will is too young for it, but I know when the time comes, we'll give it a go! Sounds like a really cool camp for many of our kids!

Here's a sneak peek...

http://memoriesthatrprecious.com/Blog/?p=542

These are just a few of the pictures that were taken during our Littlest Heroes Project photo shoot! The photographer did a wonderful job, despite having a clingy and cranky Will! (ear infection brewing...tubes Wednesday...thank heavens)

The Littlest Heroes Project

My apologies. My computer has been wacky since the four year old and one year old have decided to fight daily over who gets to play. The one year old likes to tick the four year old off by turning the computer off, mid-game.

I digress.

Tonight we had our Littlest Heroes photo shoot. I can not wait for the pictures!

Celebrating Inchstones

I talk about Will an awful lot here. (By the way, that's his "cheese" grin...you know, the one the kids pull out when you pull out the camera?)

For those that don't know him.....his story goes something like this:
He was born healthy, or so we thought. Two weeks later, he had a diagnosis of 4q partial chromosome deletion. He went home with an NG tube through his nose because aspiration led us to the NICU here. Other than that, we had no idea what his life would be like.

In the past four years, we have had some major ups and downs, as any parent of a child with special needs. The ups have outnumbered the downs....quite possibly because this is how I choose to look at it, or possibly because we started life out with a diagnosis and went up from there. (We were told he might never learn to eat, walk, talk, and so on.)

His diagnoses now also include things like apraxia, dysphagia, esophgeal dysmotility, developmentally delayed, probable mitochondrial disorder, and sensory integration disorder.

His "other" list includes things like clearing his swallow study at 11 months, the time he learned to ride his tricycle at age 4, stopping tube feeds at age 4, and so on. You get the idea. The Celebration List.

Words and diagnoses don't define the person, and yet, our children are all too defined by these words. We choose to celebrate the "inchstones" in our family. (Milestones don't manufacture enough celebrations...we celebrate the things in between, or the things they don't write about in those books!) We choose to focus on what Will CAN do and the things he does everyday that no one thought he'd ever do.

Time for celebration!! What inchstone have you seen recently in your household?

Book Review: Chronic Kids, Constant Hope

picture from amazon.com

This book is a Christian based book that discusses some of the joys and struggles we deal with as parents of a child with a chronic condition. I had the pleasure of reading this book with a community group at our church, and I can not recommend it enough. I still pull it out and will read a chapter here and there to help me gain perspective when times are tough. It is available on Amazon right now, and can be found for almost nothing if you buy a used copy. Totally worth it!