April 30, 2015
For those of you who don’t know, Amanda passed away on October 12, 2014. Our hearts are broken. Except for writing about her passing and the things that happened immediately after, justLaurel has been pretty quiet. Please visit my blog starting on September 28, 2014 on the day she fell ill and read forward from there to get the full story. Ted and I are still adjusting to life without Amanda. Some days we cry and some days we laugh over memories of her. I am the person I am today because of her – the experiences, challenges, tears, and numerous life lessons that I learned from being Amanda’s mom will continue to influence what I write here. My recent prayer has been that I can “find my way back to God” – not that I’ve left but just that I’ve been more silent and mourning. It’s time to get my voice back as I pray God gives me words that you need to hear, sight to see His glory and blessings, and a heart to love like Him.
Amanda is the oldest of my three childen. She was born in 1983 with spina bifida and hydrocephalus. Amanda has taught me all about spina bifida, the accompanying medical conditions that can occur with spina bifida, the multitude of surgeries that may have to be done with spina bifida patients, and the life challenges that a child with special needs may have to face. She has taught me to love more, expect less, find contentment in the small things, practice patience, and to trust God.
Amanda is currently thirty years old and has been living in her own apartment for the past year. She gets around by means of her wheelchair. Staff help Amanda with a lot of her care and needs. For the long story about Amanda, you will want to read my book, Amanda, Perfectly Made. For current updates and happenings, visit here.
May 29, 2014 Amanda is not moved yet and she continues to sleep without her mask. Her number are not the greatest (heart rate and O2). I am sick to my stomach with fear. We are not 100% on the group home move now and we lost one of her current staff. I don’t know what to do. I don’t know what I should do. I am tired. Why don’t people return phone calls? Have I not presented a sense of urgency to people? I am lost, tired, scared, angry, frustrated, and feeling empty – not much left in me to give.
May 2, 2014 Amanda has been living in her own apartment for over a year now. What a big adjustment that was for everybody! Amanda loves her apartment and, for the most part, her move has been a fairly successful endeavor. However … 🙁 … changes need to be made.
Amanda sleeps with an AVAP … sort of like a bipap machine that people who snore or have sleep apnea use at night. The AVAP literally acts like a breathing machine and blows breaths for Amanda. While in a deep sleep, Amanda’s brain breathing mechanism shuts down and Amanda does not take breaths. That is not a good thing. The AVAP machine keeps her breathing at night. Amanda keeps taking it off. She needs 24 hour staff to make sure it stays on at night.
Also – Amanda is many times home alone in her apartment. In an emergency, I don’t know if she’d get out in time by herself. And, for anyone who knows Amanda, she is a big social butterfly. She thrives with having people around her.
So – we are getting ready to move her to a gr0up home. It’s been a long and emotional road getting to this point. Please pray for a smooth transition. People are so quick to share opinions and advice – and they especially like to share the negatives.
How about you? What experiences have you had with group homes, self-determination living, or other moving out stories? Send me an email.
just Amanda’s mom