Under Fire.

One of my favorite bloggers, Shawni, had a wonderful message today.  She recently gave a speech at the American Mothers National Convention and posted it today for her readers.  To see her post, click on Shawni's Speech.  To learn more about her sweet Lucy, click The I Love Lucy Project.

Shawni's Speech

This journey.

We may run, walk, stumble, drive, or fly but let us never lose sight of the reason for the journey, or miss a chance to see a rainbow on the way.

Sometimes I need a reminder. 

Raising Mallory is not what I planned to do,

but it was what I was destined to do. 

I wouldn't have life without her. 

She has taught me so much.

The gravity of Smith-Magenis Syndrome sometimes shadows over the joys.  It is so easy to get lost in this vicious cycle. 

To start to doubt.  To wonder.  To fear.

But in the end, God gave us to Mallory.  

To protect her. To love her. 

To allow her to grow despite circumstance.  

I am the one she wants when she is tired, sick, in need.  ME.

I am her mother.  I know my daughter best.

I wouldn't have it any other way.

Moving Forward with a Smile.......

In the picture above, you might notice that Mallory is knock-kneed.  This misalignment of the knee is referred to as valgus alignment.  This picture is from October and over the last few months Mallory's left leg has gotten steadily more angulated.

She is scheduled to see an orthopaedic surgeon from Children's Mercy in June.  We started physical therapy this week to work on some strengthening and stretching.  The fact that Mallory's mobility is affected has been daunting to say the least.  It's going to be a difficult wait till June to find out what Mallory's options are.  What ever the outcome, I know that Mallory will face this hurdle just like she has all the others.....with a smile.

Wanna play?

We spent the day at the Frese Farm on Saturday.  It was a beautiful day for playing outside. 
Mallory ended up playing catch with her Aunt B.
It was so much fun to see Mallory actively participate in playing catch.

Work Station

Mallory has her very own computer desk.  She calls it "work".  She works on the computer there but I've also added some other activities for her to do as well.

Phone Addiction

Mallory has a love for phones. 

You've probably received a 6 a.m. (or maybe even a 4 a.m.) wake up call from her. 

She can easily maneuver a cell phone to make a phone call.  I've now been working with her on dialing on our land-line.  I've made a laminated phone number reference that she can use. 

Don't worry Brandy!  Your number is NOT on it.

Defining Moments.

11 years ago today, was Mallory's 1st surgery.

Little did we know that day that over the next 11 years, that our poor girl would endure surgery 9 more times ranging from ear tubes to open heart surgery.

As new parents, young parents, we were ignorant in those first days of the gravity of our situation. It was almost like a dream. Waiting for the moment when you awaken and everything is back to normal.

What we didn't realize was that our "normal" had been redefined.
God had a grand plan for us and for Mallory. Over the next year, our eyes would be widely opened to the joys and trials of raising a child with Smith-Magenis Syndrome. Our days were quickly filled with appointments. Doctors visits. Medications. Therapists. Lab. Xrays. Parent Educators. It was like we were on auto-pilot navigating each day around the new constant needs of our child.

In retrospect, I now realize that we did a lot amazing things for and with our daughter. She has made huge strides. Not a day goes by, that I don't remember where we were 11 years ago or reflect on the path that life has taken us or look forward to progress that we will continue to make.