Many of you may have seen the video going around on Facebook this week from my time with Carey Pena for Arizona Gives Day. In the video, I mention that just that morning was a pretty big “inchstone” in our life with Alexandra. For the first time…EVER….she wore “big girl” shoes.
I picked her up and leaned her against the ottoman….
and she stood…
She stood in her big girl shoes.
Then she smiled.
While standing in her big girl shoes.
In our world, this small (to most) but super mighty moment (to us) was so moving, inspiring, amazing, incredible. It was a moment of pure joy that I was able to witness her doing such a monumental, developmental feat.
A typically developing 2-year-old does the following:
- Stands on tiptoe
- Kicks a ball
- Begins to run
- Climbs onto and down from furniture without help
- Walks up and down stairs holding on
- Throws ball overhand …
And here we are, over the moon that she stood unassisted in shoes.
As I type this there are tears. Tears of joy yet tears of frustration that our angel has to fight so hard for such a simple thing. Pitt Hopkins has taken so much from her and we are just starting this journey. There will be so many things that will test her abilities, that will test her strength, that will test her mind to overcome and (hopefully) conquer.
Some have messaged me saying that I was so strong in that interview, and how amazing it was that I didn’t cry. Well the truth is, I cry enough. I have no business to lose it on camera. While Alexandra may have to fight some hard battles, I will not let my own abilities get in my way. I have a voice, I plan to use it to help educate others about incredible children like Alexandra. I have a gift of mobility, I plan to allow it to carry my being to help spread awareness. I have in my genetic makeup, the gift of the missing gene that Alexandra lacks. The gene that prevents her mind and her body from working in conjunction with one another. That prevents speech and language (as most understand) to occur. That strips away a “normal” toddler life.
Today, I look at these photos of her standing and I am just in pure awe. Really, it just stops me in my tracks. It is a beautiful sight to see that I will never take for granted. One day, I hope to look back on these photos and realize just how far she has come. From the day of standing in big girl shoes to the day where she is running around the backyard, or holding my hand as her little feet carry her across the street.
Gosh, how I love her so…
More photos of her standing and her smiley face here.