Camila wanted to share the happy news that our driveway has been resurfaced! It is certainly happy news as she now has an ADA-compliant surface to safely use her mobility devices. For context, our driveway is approximately 100ft in length and prior to resurfacing, about 50ft was riddled with pot holes and crumbling asphalt, while the other 50ft had sunken and cracked concrete. We are so grateful for generous donations that now will provide us the gift of witnessing Camila’s joy of accessibility, new forms of mobility, and increased independent exploration. 

 

I can clearly envision her maneuvering on our driveway in her mobility devices, with tears of joy seeing how the world just opened up for her. The pure joy we will all feel, hearts completely full. 

 

Accessibility truly is a human right and we eagerly lean into making her life accessible. This is especially important to our family with Camila’s unknown diagnosis(es) and prognosis. It is likely that it will either be quite some time before discovering her diagnosis(es) or that we can go our entire lives without knowing. Our lives do not stop without this clarity and although we are in the wait, we are not living in anguish there. 

 

Something that has helped significantly in the emotional processing is viewing Camila’s disability as neutral, rather than positive or negative. It is a part of her, not necessarily a good or bad part of her. It’s just part of her and I love her. Therefore, I am able to fully drop expectations for her and her future. This does not discount the hard in disability parenting. There are aspects of her disability that are very challenging. If you read her medical chart, it will tell you that she has hypotonia, hypertonia, missed milestones, <1st percentile for gross motor, fine motor, and feeding development, severe sensory processing difficulties, severe silent reflux, and nutritional insufficiency. 

 

What her chart doesn’t measure is her joy, eagerness to learn, curiosity, the sparkle in her eyes when she smiles, her belly laughs, or how much she loves to socialize. I’ve started even writing any one of these wonderful qualities in the symptoms section of pediatric intake forms to make sure her providers are reading her file and can also experience a bit of the joy we feel. 

 

No expectations have allowed me to fully lean into the disability community, advocate for her needs, and meet her where she is at. For example, I no longer place value on walking. It’s not on my radar. I don’t think about it. I don’t hope for it. Camila will have a fulfilling, adventurous, and love-filled life whether she has an ambulatory body or not. My hopes for Camila stretch much farther and larger than Camila walking. 

 

With that, I’ll end by saying thank you for being a part of our family’s journey and supporting us in many forms. We have a couple more exciting updates coming soon, so stay tuned! 

 

-The Weilnhammer Family