Your children amaze me

Your children amaze me.  No, really. I know I have mentioned before how I am touched when other children are kind to Angie but I want you to know that I see it every single day.  Handing her a pool toy that is out of reach.  Helping her into a chair that is just a little too high.  Holding her hand on the playground at church.  Sharing a snack at a party. It just goes on and on and I am falling in love with the children of our community one by one.  Thank you for raising such wonderful, caring children who will be the wonderful caring adults of tomorrow.  Please know that their kindness never goes unnoticed or unappreciated.

Angie is absolutely thriving.  We had a whirlwind weekend filled with Normal. My favorite.  We went to the homecoming game Friday night so Angie could celebrate her friend Will's Princedom.  Is that a word?  It was freezing cold but worth every minute.  Saturday, Angie was invited to the pool with her classmates for a birthday party.  I have to admit, I was nervous about this one.  I was not at all sure that it was responsible to let her go into the pool without an adult.  I put on my Brave, though, and put a life jacket on my girl and watched her go.  And she did.  For over 90 minutes that girl swam and played with her friends and her momma sat on the edge of her seat, watching:)  Worrying:)

Sunday, though, was my favorite day yet.  Maybe ever.  On Sunday, Angie and I joined our friends in Portland for Disney on Ice.  I don't even know how to describe the experience.......amazing, stupendous, heartwarming, and fabulous all fit the bill.  I did not know how to describe the ice show to Angie so she really did not know what to expect.  Somehow we got seats in the 2nd and 3rd rows, only a few feet from the ice.  Thank you , Joelle.  It was perfect!!!  Angie's awestruck face put a smile on my face and it stayed there for the entire 2-hour show.  She is planning to dress up as Minnie Mouse for Halloween so seeing Minnie in life-size magic in front of her gave her the giggles.  It was a late night, but totally worth it. Unless you ask the school staff that had to deal with Miss Cranky Pants this morning.

They are struck speechless!

Princess Angie

So grown up!

Last night was a treasure.  Angie and her friend Ky talked and laughed in the car together like kindergarteners do.  Angie listened to Ky tell jokes and by the time we got home she had told a few of her own. Angie told one of the adults in the car to "use your nice words".  It was perfect.  I can't stop smiling.

I had some serious stuff to write about here but this has completely taken over my attention and I had to share it.  The serious will wait for another day.

Did you pray?

You prayed, didn't you?  Well, it worked!  Miss Angie had a much better day today and she came home with a chart full of stickers.  She could not wait to tell me about it when I got home.

Tonight, I took Angie to a harvest party at church.  We only stayed for about half of the party because it was bedtime (we try not to deviate from the routine on school nights) but she had a great time with her friends.  She participated in the games and decorated a pumpkin cookie before we had to leave.  I loved watching her follow the rules of the games along with the others.  There was a "cake walk" and each time the music stopped, she asked the child next to her if it was okay to take the neighboring seat before sitting down.  So sweet!  On the way home tonight, she said, "I am so happy, Mom!".  My mommy heart is happy too.

Angie has a speech evaluation in Portland tomorrow.  She has been out of speech therapy since her insurance authorization ran out in July because her insurance only allows for a specific number of visits within the calendar year.  I am anxious for her therapist, Chris, to see her and for her to show him the amazing gains she has made in the past few months.  Chris has been Angie's speech therapist since she left rehab after her surgery.  He knows how far she has come.  Still, evaluation results are always hard to hear, as the results are presented in terms of what she can't do rather than what she can.

We have been the recipients of so much kindness recently.  People don't always realize how much a kind word or a simple text message can mean when it comes at a low time.  Or, a small action without expectation of payment or thanks.  They mean the world.  Don't stop doing them, not just for us, but for anyone.  They mean everything.

Our "Stay Home" Days

Today was one of what Angie calls our "stay home" days.  Not because we always stay home, but because I do not go to work.  She asks each morning if it is a "stay home" day and today it was!  Here is what our "stay home day" looked like today:

Blowing Bubbles

 Making Halloween Treat Bags 

Snuggling With Mom

I love our "stay home" days, too.  Angie is so much fun to spend time with and she makes me laugh.  All. Day. Long.  I can easily become WAY too serious so the laughter is truly a gift.  

I am sharing the highlights, but since I said I was going to be real on this blog, I will share the low points, too.  Life isn't all about blowing bubbles, after all.  Angie woke up crabby and her mood did not improve at school.  The poor substitute teacher got to hear all of Angie's "choice words" as Ms. Stafford calls them and I am sure she was less than impressed.  I know I was not impressed.  This afternoon, Angie was supposed to have a family visit that didn't happen and although she didn't realize it was scheduled, I was completely disappointed and I cannot imagine anything that would keep me from visiting her once every 3 months.  That is about as real as it gets. You make time for what is important to you.  

Tomorrow is a new day. We have saturated our conversations with examples of "nice words" as opposed to "naughty words" and I know Angie is taking it in.  She has an amazing team of people guiding her at school and they have set the scene for success.  It is coming.  I just know it.  Now, maybe we can all pray for it too, just to make sure?

Mom to Mom

This is how grown-up and "Kindergarten" our girl has become.  I wonder every day at the growth she is experiencing in school, and at home.  It is hard to put into words, so I will call it "learning the ropes".   She is figuring out how the world works and is learning to adapt her behavior.  Hard work.  Every day, she shows us new skills and knowledge and it is thrilling to see!

I was contacted this week by a mom who could be me two years ago.  "K" has a daughter who is almost 3 and her daughter has bilateral Sturge-Weber Syndrome like Angie.  K's daughter is experiencing status epilepticus, which is a medical term for seizures that are nearly impossible to interrupt and last long periods of time.  Status epilepticus causes serious developmental decline.  She has these major seizures every month or so and the doctors are running out of options for treatment.  Deja Vu?  I think so. The doctors have said surgery is a longshot, even though that is their recommendation, and they have given the family little hope for long-term seizure control.  

Oh no you don't!!  We know better.  K and I have had numerous email exchanges and with each reply from her I hear her hope growing. She is terrified and desperate.  I completely understand.  And we both know that each child with SWS is unique.  But there IS hope.  I would be lying if I said that meeting K has not been as beneficial for me as for her.  My own hope is renewed when I recount our experience and I know that God is using Angie's experience for good.  I look forward to following her daughter's story and I am hopeful that another precious child can experience the renewal that has occurred in Angie.

This is what life is all about.  We all have experiences that can be used to offer hope to another.  I know we do.   That is how God set this life up for us.   Every single one of us.

Welcome to my new blog!

Well, I finally did it!  I have been considering replacing Angie's Caringbridge site with a regular blog and now I have taken the plunge.  This blog is a leap of faith for me, and a symbol of leaving past worries and anxieties behind.  We do not NEED a medical webpage anymore:)

I am honored if you have chosen to follow me and I want you to know that I am committed to being honest and real on this blog.  Our family is far from typical and we have some pretty crazy experiences that even I wouldn't believe if I weren't smack dab in the middle of them.  This blog is a place where I hope to share the entirety of our experience as we continue to help Angie heal and grow and as we ourselves grow at the same time.

I have said it before and I am going to say it at least once more.........our family experienced a miracle on May 27th, 2011 when Angie was given a new hope for her future.  We live each day with that awareness and we do not take anything for granted.

Thank you for joining me here, my friends.  After all, many of you have your own special role in our miracle.