We Have A Walker

108 Early Intervention Physical Therapy Sessions at home

62 Aquatic Therapy Sessions at the Children’s Institute

62 Land Based Therapy Sessions at the Children’s Institute

For those of you counting, that’s 232 hours spent in physical therapy leading to this moment right here:

 

I have been desperately searching for the right words to stress the importance of this monumental occasion. When any child walks for the first time, it is something to be celebrated. For our family, this is one of those examples of ordinary moments becoming extraordinary.

Some days, this life is challenging. There are days that I want to cancel every therapy session and go do something spontaneous. Then, we have a moment like this, and I remember why we work so hard. I have had the privilege of watching this baby progress on this journey. I saw her struggle and fight, with grit and determination, like no one I have ever seen. I am gifted with this unique experience that very few people get to witness in a lifetime. She has had to fight to roll over, to sit up independently, to cruise, to stand, to crawl, to creep. Nothing came easy to her. It has been brutal work and taken loads of time.

Did you know that the body uses approximately 200 muscles to walk? These muscles must coordinate and communicate with your brain in order to hold you upright, put one foot in front of the other, direct your motion, and get you from one place to another. This is something that parents wait for, camera in hand, to capture. Every parent can recall exactly how old their child was when they began to walk.

Now imagine that your body worked a little differently, and your muscles were so relaxed that you possessed superhuman flexibility.

Could you put your feet up over your head? No problem.

How about a split in your stroller? Piece of cake!

Could you use those 200 muscles to work together and walk?

Yes! It just might take you a little longer….27 months to be exact

But it would be that much more exciting to finally achieve your goal. It would take vast amounts of energy, time, and determination to succeed. Your mommy would be by your side the whole way and when you finally walked, she would celebrate this life changing moment. She would record it and watch it over and over.

At 2 years and 3 months old, sweet Sienna Mae became a walker. I ugly cried like I had just watched Toy Story 3. Congratulations to my precious girl.

I’d be leaving out a huge part of this puzzle if I did not mention Sienna’s therapists. I cannot say enough positive things about their dedication and commitment to my child. They have been a rock for our family. They have given us the tools that led to this moment. If I didn’t acknowledge them, I wouldn’t be sharing our true story. They are the unsung heroes. Thank you, Peggy, Amy, Lydia, and Sammy! We love you.

“Great people do things before they’re ready. They do things before they know they can do it.” -Amy Poehler

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Sharing Life with Sienna

I made this video to show to a group of students studying to become genetic counselors. Genetic counselors typically deliver a prenatal diagnosis. A dear friend and fellow rockin mom and myself presented information to them about how wonderful life is with that little something extra. I think we truly made an impact. Our hope is that they walked out of that classroom knowing they can share some wonderful stories about our kids and the resources available to families. This kind of advocacy work is the most rewarding, because you truly feel like you are making an impact. The following video has been shared over 400 times and has close to 30k views. Please continue to share. This could help a mom struggling right now.

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Roadblocks

Today, I hit a small roadblock on my journey of advocacy for Sienna. If I am honest, these moments can set me back. My roadblock came in the form of an adorable little girl who had a perfectly normal question for a kid to have. She saw me walking Sienna and stopped. She looked up at me and said, “Why do her eyes look that way?” I responded by telling her that her eyes were shaped like almonds, because she has something called Down syndrome. She stared at her some more and then walked away. Haley was with me and she looked up at me and said, “I think Sienna’s eyes are pretty.” My eyes began to water as I responded, “Me too, baby. Me too.”

It doesn’t seem like much of an altercation, but it took me back to a moment last year when a little boy approached Sienna and I and asked why she looked like an alien. This was a little boy I had to see at a weekly activity. He called Sienna an alien baby quite a few times. At the time, I wasn’t strong enough to approach his mom or even correct him. I just ignored it, which I still beat myself up over.

Moments like these knock the air out of you as a mother. You know your child is beautiful, but the world only sees something different. I will not always be able to protect my girls from insensitive comments that come from others. It terrifies me. It’s inevitable that some day Sienna will be hurt by the ignorance of someone. I just hope when that happens she has enough self worth to know that she is a beautiful perfect person.

 

The only sense of control I have over Sienna’s future is to educate others on how to accept and welcome differences. Some days, I am Wonder Woman and I am ready to go into battle. Other days, the simplest comment can make my eyes water and send me into a puddle of tears. I know there will be challenges on this journey. It’s okay to have roadblock days. Tomorrow, I will wake up ready to take on the world for my girls again. I wouldn’t change Sienna for the world, but I will change the world for her.

“You may not always have a comfortable life and you will not always be able to solve all of the world’s problems at once, but don’t ever underestimate the importance you can have because history has shown us that courage can be contagious and hope can take on a life of its own.” – Michelle Obama

 

 

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