It’s been a long time since we’ve posted. Juni is a loving, outgoing and active 6 year old. Due to Covid-19, she has had remote learning supports since Winter 2019 through our local school district. We are learning how to cope with such extreme isolation. Since Juniper has a very low seizure threshold, thus unfortunately we don’t see friends or family much.
Daily walks and hikes help us stay active and connected to nature. Juniper loves grabbing the leaves, ferns and moss. She explores her environment through her sensory experiences. It’s a joy to watch her inquisitive mind working, exploring, and creating.
She is an active crawler, and loves climbing on the kitchen table much to her Mom and Dad’s chagrin. In June, we received a Make A Wish which transformed our boring dining room into a PT room complete with padding, rocker, rebounder and sensory toys. I was grateful they worked with us to make the room nontoxic and used predominantly organic materials.
After being stable for two years, unfortunately Junipers status seizure emergencies started up in August. We have been managing well on her Ketogenic diet and organic blenderized foods. Unfortunately, we have had to increase her meds. Through it all, I’m shocked by her strength, perseverance, and love. She’s much stronger then I am.
I’m learning so much about life through her eyes: how to be a better advocate, to keep fighting for disability justice, an anti-ableist world, and how to slow down and enjoy the softest touch of a nearby feather. I am in continual awe, and grateful to call myself Juniper Maya Paruch’s Mama.
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Juniper’s outdoor adventures make me want to get out there and explore my world a little more with our family, too! I’m very sorry to hear about the return of her seizures. I really hope your team is able to get them under control very soon. Sending my best to you all!