She’s a Stair Walking, Bird Wearing, Awe Inspiring Little Lady

Last week, Rob called me at work to share exciting news regarding Lola…she had walked down the stairs while holding the handrail in her preschool classroom. I could hardly believe what I was hearing. Not because I didn’t think Lola would eventually do it, but simply because Lola isn’t able to walk on her own yet. She needs full hand assistance when walking, so for her to master the stair walking alone was quite a remarkable accomplishment. In fact, many children that are able to walk unassisted continue to receive early intervention therapy simply to master this difficult task. I was elated with happiness, but I sort of wanted to see for myself because I couldn’t really picture in my head my tiny daughter walking down stairs. And then last week, I was able to witness it for myself…

Tears well up in my eyes every time I watch this because I am so darn proud of my daughter. She surprises people every single day with her continuing progress. And while she doesn’t do things on what is considered to be “typical” time, she eventually figures it out…just on Lola time.

She decided to feed herself with a fork at Qdoba the other night.

She decided to feed herself with a fork at Qdoba the other night.

Halloween

We live in a tiny suburb of Indianapolis called Irvington. Irvington is known for all of its Halloween festivities. In fact, Irvington starts celebrating the entire week before Halloween with all sorts of community activities. This years included everything from a Haunted Puppet Show to a Scary Organ Concert to a 5K run and they even have a Halloween Festival where the downtown Irvington streets are filled with local artist vendors, food trucks and people dressed in every costume imaginable. They go all out here which meant Lola’s Halloween bird costume was put to good use (she wore it on three different occasions in fact).

Halloween 2013-9

Halloween 2013-10

Halloween 2013-11

Halloween Parade at School

Halloween Parade at School

Halloween 2013-5

School Artwork

School Artwork

Halloween 2013-6

This year’s trick or treating was pushed back by the City of Indianapolis to Friday night, the day after Halloween due to bad weather. OK – I must admit, the weather was much better on Friday night, but I was disappointed that our city somehow had a say in something with so much history such as trick or treating. I understand keeping everyone safe, but I can remember trick or treating in crazy weather and to me…that was what made it even more memorable. Regardless, we took Lola out on Friday even though she was a bit under the weather. She enjoyed listening to all of the kids scream and laugh around her and many times she tried to jump out of my arms after them. I continued to tell her she’d be running around with them next year in which I truly believe she will. But our neighbors were excited to see Lola out and many applauded her on her ongoing progress they read about on our Say Hola Lola Facebook page.

Halloween 2013-8

Dining in the Dark

Last weekend, VIPS-Bloomington held their second annual Dining in the Dark dinner and auction in Bloomington, Indiana. Excited and eager to support VIPS, Lola and I packed up the car and headed down for the event. Sadly, Rob was busy at home with his long list of continuous projects so he couldn’t attend. And believe me…after about 10 minutes of managing Lola alone at the event, I sure was beginning to realize how much we rely on him. This is precisely why I have only a handful of photos because that’s just it…Lola was a handful herself!

Halloween 2013-13

Halloween 2013-12

Halloween 2013-14

Much like last year, the event was elegant, informative and impactful. There were blind-folded wine tastings, Braille reading lessons, scent smelling stations and just anything that would help others gain insight as to what it’s like to live as a blind or visually impaired person. Dinner (served to many with blindfolds) was especially delicious and the chef tried to make the meal an ultimate sensory experience featuring bold flavors and noticeable textures.

This year, Lola was featured in a video that was beautifully compiled by a dear friend and supporter of VIPS. My copy is en route and I hope to share it with all of you soon, but I have to say after watching it, I felt more inspired, more hopeful, more thankful for VIPS and even more proud of my daughter. To see how much she has changed since the video was recorded…well, it was uncanny the difference between Lola then and Lola now. As I sat there watching, I held her close, tears streaming down my face and I told her I loved her. I don’t know if she understood the full extent of my emotions, but she laid her head down on my shoulder, hugged me back and in that moment, I felt the wordless exchange that only a mother and child could create.

She understood.

She loved me too.

Now stop crying Mom because you have to go speak in front of all these people.

And I did speak.

But I never stopped crying.

I stood in front of strangers, fellow parents, restaurant employees and VIPS administrators and I sobbed. I had nothing written down for reference therefore I continued to hold Lola’s hand in hopes that her being there would remind me to keep it together. As embarrassed as I was for my inability to stop sobbing, I knew my words were impactful because they were the truth. Our truth. VIPS came in during a time when the only hope we had in learning about Lola’s vision impairment was what we could find on the Internet. How can you teach a child when you don’t understand the diagnosis? How can you create a world fit for them when you don’t understand their world as they see it? It was frustrating for Rob and I as parents. Then after jumping through countless hoops and after making numerous phone calls, we found VIPS. And our lives changed. We finally felt like we would gain the knowledge, tools, resources and support that would enable us to help our daughter. This was my message. I don’t know if it helped people open up their hearts along with their checkbooks, but the overwhelming amount of people who approached me after the event led me to believe that yes…my message was loud and clear — VIPS changes lives.

On Tuesday, Lola checks into the hospital for another 24 hour video EEG. I will be posting updates on our Facebook page on how she is doing during this long procedure. Our hope is that her brain will show no signs of seizure activity and we can finally wean her off of the anti-seizure medication. We welcome any prayers, good thoughts and positive vibes. I know she’ll do great, but her pregnant, emotional mother on the other hand…well that’s a whole other story.

Happy Sunday!