Six years ago I had this crazy dream ... what if I could raise enough money to start an independent LIFE home for women with autism and what if that home could actually BE the very home where Stephanie (my severely autistic 22 year old daughter) grew up? Her childhood home becomes the home where she will spend the rest of her life.
At the time, Stephanie was already 9 years into a residential program at a wonderful school for children with disabilities ... and while we were delighted to see her progress from a wild child to this demure and sweet young adult, it was painfully clear that she would need care 24/7 for the remainder of her days. There is no cure for autism, only therapies and behavior techniques and calming and focus medications to keep her on track. We faced the same issues that every parent with a child who has lifelong disabilities faces - what happens when they turn 21 and age out of the every day school schedule and they cannot work or care for themselves. At all.
And what if I die? Who will care for her then? And how could I, at age 50, figure out a way to support the family and take care of her needs full time? How could I create the best life for my daughter who clearly was not capable of choosing her own dinner let alone choose a lifestyle.
The decision to move forward to a 501c3 and become a non-profit dedicated to providing loving and dignified LIFETIME housing solutions was pretty much a no brainer. Life had given us some serious challenges and I was going to reply with some equally serious responses. That is what we are here for, right?
Fast foward to 6 years later ... 6 years behind me of fund raising and meetings, and legalities and expenses and fights unimaginable behind-the-scenes triggered by the very people who should be supporting my goals 110%. And joys beyond my wildest dreams. Stories of generosity and love and outreach and, quite frankly, a few miracles tossed into the mix. The journey was set and as such, all of the tools and people I would need would be presented to me in the right times. It all came together.
Our home opened last week. Stephanie's House. Quietly ~ not with the fanfare and ribbon cutting and news media and fireworks. The kind I had hoped for if only to show parents who are in a like position that yes, this CAN be done. Instead, we moved her into her Mally pink suite. Our house manager, Gayle, is in the refurbished and lovely master bedroom. Stephanie has a home to call her own for the rest of her life and once she is adjusted, we think about bringing in a roommate, helping another family with a daughter like her.
I am finally an empty nester.
Not sure I like it.
When she graduated from her school a little over a year ago and came home to us it was a huge change. She had been away for 14 years and only with us on the weekends and holidays. It was a year of getting to know my daughter all over again. She was no longer the 7-year-old little girl who had the energy of the road runner and the curiosity of a bull in a china shop. She had grown to become a lovely young woman, kind and sweet, quirky and determined. And this mom fell in love again and for the last year, I have had the time of my life with her. As deep as any person can.
We have never had a conversation. She spews a word or two and a sentence on occasion, but for the most part, she does her own thing. She loves her room and her computer - she can surf with the best of them. Her routine is mostly the same, especially at night. 10 cheeseballs, an apple and a big glass of water. We have her diet gluten free and we have been lucky enough to partner with a company that I believe (as a chef in my own right) has the best gluten free mixes in the business - Bloomfield Farms. We write her schedule every day on a dry erase boards so there are no suprises. Yes, she reads. She cannot write, but she reads pretty well. Oh, and she can S P E L L, too. :)
So here I sit this chilly autumn morning. The house is quiet. I do not hear her broadcasting from her room ... "coming soon to a theatre near you." There is no dragging of her feet across the kitchen floor and the fridge door opening. NO sneaking of cookies. Or frosting. NO jumping in the tub while I am in the middle of a conference call. NO nightly bath and teeth brushing drills. NO watching her fill up her special teapot with juice and pouring herself a cup with the grace of a duchess. NO inappropriate farting in public places. LOL. No hugs and kisses every morning and at bedtime. No repeat again and again and again "Stephanie's house ... happy home. Stephanie's family - mommy, Andy, Ryan, Nick, Miss Gayle, Miss Kathy, Miss Michele, Jaime, Grandma and Grandpa, Lucie and Sweetie. Ya...." Insert her clapping and smiling.
I miss her. Something awful.
And I realize that her not being here is BECAUSE of me ... and I remind myself that it is because I love her. She will be 23 years old. I created a safe, loving, productive and very special life for her. It is the best life for her. Today, amidst my tears, I feel that same angst any mother feels when she sends a child flying from the nest. And she is soaring ...