Earlier this spring, Ellie finally accomplished a big milestone that we had been working on for over a year...
ELLIE CAN STAND UP BY HERSELF!!!!
This may seem crazy but one of my favorite parts about parenting kiddos with differences (& I have a lot of favorite parts :)) is how we don't take much for granted. We have high expectations for our kiddos - but we also know that our kids have to work so hard and often endure surgeries or therapies or medical devices (or all of the above) to accomplish what seems like a minor goal for most people.
Not being able to stand up by herself has really been a challenge for Ellie (& me.) As she has gained mobility and independence, she has been able to venture farther from Mommy (like at a park or a friend's house or in our yard.)
However, she falls alot and until very recently, that meant me always running to help her get back up because she was unable to do that by herself. I also had to help her in her dance class as sometimes a certain move required getting down to the floor and back up. It's not a big deal and it was just our normal and our habit so not something I really thought about - until I noticed my friends not having to help Ellie's friends back up and realized this was hampering her independence. We've worked really hard in PT (rather, she has with her therapist) & just struggled for over a year since learning to walk to figure out how to get up after a fall.
And then while playing in the yard one afternoon, she suddenly did it!!!
With tears in my eyes, I quickly videoed and sent it to her therapist and her daddy and her grandmothers. I cheered and cried and celebrated.
Then I had her do it again and again and again.
Recently, she had toxic synovitis (sounds worse than it is) in her hip and has kind of regressed as far as standing up. Going back to not being able to get up independently was such a struggle for her after learning how to do it. She has just started within the last week or two to do it again and I'm just so grateful all over again.
I love being able to celebrate "little things" and knowing that really, none of it is little. Life is so much more fun and exciting and sweet when one has to work hard towards their goals and when we get to celebrate together seeing them accomplished.
Shortly after this big accomplishment,
Ellie had another.
For the young doctor who told me when Ellie was 29 days old that "she probably won't ever walk but there's still a chance for quality of life..."
(to which I heartedly (& uncharacteristically as I tend to be more timid) responded that we do NOT determine quality of life based on mobility.
To that guy-
I present,
Ellie - RUNNING her very first RACE!
We really enjoy local community races and have participated in one particular one for years. This year, I was so excited because it would be the first Ellie could potentially do ALL BY HERSELF since learning to walk in December 2012. (She rode in the stroller in 2013 as her arms and legs were casted from surgeries.)
Most of us aren't morning people in this house but Ellie woke up so so excited to do a race!
We loaded the car and raced quickly to find a parking spot.
I had double checked our registration info and online and knew the kids' 50 yard dash was scheduled for 8:00am.
But - as we headed to the start line at 7:50, we heard them announce the kids' finishers!
I double checked my watch. I double checked my phone time. I double checked with several other people near the start and everyone agreed it started (& finished) earlier than expected.
Well.
I am generally always running late and I will accept consequences and responsibility if it was my fault my child missed participating.
However, I was not about to turn around to that precious three year old little girl who has WORKED HER TAIL off in therapies and endured multiple surgeries and WEARS SPLINTS EVERY SINGLE DAY AND NIGHT and tell her she wasn't running in her brand new running shorts she picked out.
I just could not do that.
Some sort of inner mama lion overtook me and I marched right up to the race director.
I informed him the kids' race had started too early according to the information provided to runners. He agreed and admitted he was surprised it had started early and he wasn't really sure who made that decision.
I then asked if he had any remaining medals (my children were pre-registered so I had every reason to believe he should have their medals ready) and told him we would make our kids run the final 50 yards of our run to "earn" their medals. I let him know I was disappointed (as were my kiddos) that they started too early.
Well.
That race director shocked me and told me to follow him.
He headed to the announcers at the start line and made an announcement that there were some "special" runners who were going to run the kids run & he asked people to please come back and cheer.
Now. R & I had mixed feelings about this. I didn't really like him designating my kids as any more special than any other kid racing out there. Also - we didn't want the special attention. This race wasn't about us or anything we are involved in - it's just a community race and we were simply asking them to honor the start times posted (& honor the registrations we had signed up for.) Really, I had hoped he would hand me the medals & let us have the kids run the ending of our run & that would be that. Morever, we would have preferred that he simply opened up the kids' dash for one last dash and invited any child who missed the initial one to compete. This would have been fair as I assume there were other children who missed the start time since it started too early. Plus, this would not have singled out Will & Ellie.
One look at Ellie's determined, hopeful face, however, & I just had to set aside my own insecurities and feelings about being singled out.
When they signaled to start, Ellie just took off.
Will, meanwhile, was feeling very self consious (understandably - there were lots of strangers suddenly filming and taking pictures and it was very awkward) and so he said he wasn't going to race. I told him to stand to the side then while his sister did.
Being rather competitive, he couldn't stand the idea of Ellie racing without him so he took off.
Will is FAST. He quickly blew past Ellie but she was in her own zone and didn't seem to notice.
She held her Daddy's hand for most of the way and she managed to make it the whole way without falling!! Not bad for walking on slick brick streets and for a girl who suffers from lots of falls.
She made it through the finish line all by herself and my heart just swelled.
It wasn't about the race really - just seeing her pride in herself and knowing she has worked so hard and come so far and she is walking by herself. I am so so thankful to have a front row seat!
They actually only had one medal left for the kids' dash (poor planning it seems on several counts) and despite finishing first and having the medal placed on his neck, Ellie's big brother removed his earned medal & graciously handed it to her knowing how much it would mean to her (& he has others at home.)
(Score 2 for parental pride that morning!! His medal gift was unprompted.)
She wore it proudly all day.
The kids then joined R & I for the 5k. They rode part of it in the stroller and than ran/walked the final 1.5 miles!
We were one tired & happy family that rainy Saturday!
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