My goal and intention in starting this blog is to share our unique family and our experiences on this crazy journey of raising a special needs child, losing a child to cancer, and parenting a normal child. How we cope and manage as a family. How I manage as a mother, caregiver and wife.
Please be patient with my format. I'm knew to blogging. I am really learning as I go. I'd like this blog to have a sense of order, but I am finding that topics just seem to randomly pop into my head. If you have suggestions about how I can create a more user friendly blog, please share.
I recently had a discussion with my family. They would prefer that I not use their first names all over cyberspace. Which is completely understandable. I have tried to modify my posts in an effort to grant their wishes. The only name I will use is Cienna's. She's no longer here and perhaps someone from that time in my life may see her name and recognize it. There are so many children and families that I met who were battling cancer and I think of them often.
I recently had a discussion with my family. They would prefer that I not use their first names all over cyberspace. Which is completely understandable. I have tried to modify my posts in an effort to grant their wishes. The only name I will use is Cienna's. She's no longer here and perhaps someone from that time in my life may see her name and recognize it. There are so many children and families that I met who were battling cancer and I think of them often.
I am open to questions about any of the experiences I have listed below. I hope to get to each one, but have no precise plan on the order.
My Son, F -
His life as an individual with severe disabilities and chronic health problems. I hope to share things that may also be from his perspective. F cannot speak, but there a things about him that he'd like people to know and experiences he'd like me to share.
Experiences with:
AT/AAC - which is assistive technology and augmentative communication
Seizures - his struggle with medications and his diet change Modified
Cortical Visual Impairment
Durable Medical equipment items that have helped him... or not
Living with cerebral Palsy
Special education and our monumental struggle to get Forrest an education
IEPs
Encephalitis
Conservatorship
His struggle for independence
How we manage his daily living needs and self-care
Quality of life
Cienna -
Her life. Her death. She was born with bilateral retinoblastoma. Our short, incredible journey together with her.
C-
Competitive swimmer, preteen, tomboy, future veterinarian, negotiator, conservationist, champion of causes... who knows really the world is hers. My greatest desire for her is to love what she does and lead a most joyful life... on a path of her choosing! Her experiences as a sibling and child in such unique family.
R-
The husband. My partner and participant in this crazy life. The one person I constantly struggle to get closer to. This life has put a layer around him for self-preservation and I want so much to get through it.
This blog is dedicated to my kids. They have been my greatest gift and joy in life. I would not be who I am today without them. I hope that their stories may help, encourage, or inspire someone along their journey.
Another tidbit about me. I have a ton of interests. I like to run. I used to be a gym rat, until I started homeschooling my kids. I miss it terribly and do not enjoy the additional flab that I worked so hard to get rid of. I struggle to stay motivated with my fitness. I also struggle with my weight, with occasional bouts of the blues, compounded by isolation due to my unique life. I'm trying to get my life more organized and efficient. Get my family out from under credit card debt. Help my husband start a business. My efforts to work on our marrage. All while trying to maintain my sanity and find time for myself.
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