I often sit and wonder about the past twenty-something years.  The memories, good and bad, are still so vivid in my mind. The streets and roads that we chose to go down as a family were all influenced by having a child with special needs. I sometimes wonder if Baby Boy and Baby Girl would be the same people they are today without their sister and her special needs? And, what would Boy and I be like? What kind of relationship would we have today if we weren’t forced to come together and work things out so many times during those early years? But, more importantly, what kind of person would I be today if I hadn’t been made to face my guilt, shame and envy? Had my little girl truly changed our family and made us better people despite everything?

I had never understood what people meant when they thanked God for their special needs child. My bitterness often made me scoff at comments like that when I would read them or hear them. I honestly couldn’t understand why someone would be thankful that their child was disabled; it just didn’t make sense to me. I had always yearned for things to be different and for her to be ‘normal.’ I struggled accepting the fact that she wasn’t going to live the life that I had imagined all those years ago and I wanted so much to change things. I didn’t want it for myself, but for her. I wanted her to have those experiences that every mother wants for their child and that was the cause of so much grief and pain that I carried with me each and every day. Although, now, twenty-something years later, I’m able to understand what those people meant when they said it was “a blessing,” I still struggle everyday accepting it.

What I mean is; I understand that our beautiful young daughter has changed our family. She has given us a unique view on life. One that’s focused on acceptance and understanding of others that are different. A view that’s granted us patience beyond what’s typical for any family and a view that includes loving each other no matter what the circumstances. I understand that she has given me strength to handle so much more than I ever thought I could and she has given me resilience to climb back up that metaphorical rope each and every time I slip off.  Our family wouldn’t be the same without her in our lives and I understand that, but, I do not accept it.  I do not accept it because those feelings and emotions are the very things that keep me fighting to understand her and others like her. I realize I can’t change it, but I’m angry. I’m angry that these things happen to such innocent people. And, I’m angry because there isn’t enough support for so many individuals with disabilities as they become adults. Yes, I’m grateful for the positive effects on our family, but I want more for my daughter and the tens of thousands like her. I want a life for her beyond the four walls of her bedroom and beyond just her family.

You see, after high school, she hasn’t had much of a life. She, along with thousands of others, remains on a waiting list. Waiting for her medicaid waiver services so that she can attend a day service program every day, live in a group home with some of her other adult friends and have care-providers to help her with some basic daily-living skills. At this point, while she’s waiting, family is everything for her. We continue to be her support, her care-providers, her entertainment and her transportation; but we can only do so much. We’ve given up certain things within our own lives and we’ve had to set aside time and money to provide a life outside our home for her because the alternative would be…..nothing. On the days she sits at home, she does….nothing. She sleeps in her room and when I make it home after work, she’s frustrated. She’s frustrated because she’s bored, anxious and lonely. She’s abnormally attached to me; following me around wherever I go, petting my hair, talking to me nonstop, mostly in the form of repetitive questions because that’s how she communicates. She can’t stop her worries and fears that someone else may be talking to me and this makes her angry. So, she aggressively acts out on anything and anyone in her path; which ends up being me…..most of the time.

Family is everything for her, but I wish it wasn’t the only thing. Through the years, I’ve met so many incredible families. I’ve witnessed their tenacity as they care for their child with special needs. From young families to old ones; I’ve watched them. No better people exist in this world and my heart pours out to each and every one of them. I see them; especially those older parents that have been on their roller coaster for years and years. I see past their smiles and pleasantries and I know them. I see the fatigue and exasperation of years caring for their loved one without complaining or questioning; sometimes without even stopping to care for themselves. They do it because the love they have for their child is enormous and surpasses all those other feelings they’ve held back for so long. I know in my heart they’ve felt the same things; the guilt, the shame, the envy. It seems, however, that the years have subdued those feelings for them. Perhaps, they’ve allowed themselves to accept things.  And, every time I see them, I catch a glimpse of my own future. Boy and I will always be everything to her and our love for her surpasses everything else because that’s what family is.

Family is everything, but it shouldn’t be the only thing. I’ve learned from years of talking to young people with disabilities that they want their own lives apart from their families. They don’t want their parents ‘caring’ for them like children forever. They want what their peers have; friendships, relationships, love, and the choice to do what they want to with their own lives. Even my daughter, despite her ‘low IQ’ wants the same things and it’s taken me years to realize and understand the importance of that. Self-determination, self-advocacy, self-reliance, self-sufficiency, all of those things are vitally important to our growth as individuals and as adults. Why wouldn’t it be important to people with disabilities as well?

Tomorrow I will look upon with joy instead of sorrow, because the best is yet to come with the acceptance of tomorrow. When I wrote those words over fifteen years ago, I was hopeful that the world would take care of my little girl. Now, whenever I see those aging parents, gray hair, tired eyes, dragging bodies, I realize how far we still have to go. They’ve been worn down by the years. The years of fighting for services for their child. The years of fighting against substandard programs and second-rate care. The years of worrying that their child was being taken advantage of by others. Many of them have given up and have taken their adult children back into their homes. Sadly, many of those adult children have experienced what we fear the most as parents; being used, abused and neglected by their so-called care-providers. And, while that reality scares me to death and makes me sick to my stomach to even think about, I’m going to put my faith in the fact that there are good people in this world that won’t let that happen to my little girl.

Acceptance and respect are out there;  I know they are. They are there in the young people I see all around me. The ones giving up so much of themselves to help others in need. The ones who’ve grown up surrounded by individuals with disabilities in their classrooms and in their communities. Respect and acceptance are there in the people who are fighting for the rights of individuals with disabilities so that they can experience self-determination and make their own decisions. They are there in the hearts of the amazing individuals providing exemplary care to adults in day-service programs and group homes for minimal pay. They are there within the siblings, selflessly helping their parents without questioning or complaining and sometimes taking on guardianship of their special needs siblings after their parents have passed away.  And, they are there within the parents and extended family members giving everything of themselves and never stopping. I’m encouraged by these observations but I know we still have a long way to go and I understand that Boy and I will always be everything to her for the rest of our lives.