It’s no secret that motherhood is a process of letting go. From the beginning when they propel themselves from our bodies, each step our childrend take away from us gets bigger and bigger. First day of daycare, first day in kindergarten, first sleepover, first day they drive off in a car alone, first job. Send them off to college, to war, to marriage – we watch them go out into the world with a mixture of sadness, fear and pride.
For the parent of a child with a disability, letting go brings its own set of fears. If our chld is not mobile, who will help them get around and attend to basic needs? If not verbal, how will they let their desires be known, and if something’s wrong how will they tell us?
Our son, Andy, is 22 years old and has Down syndrome. He has a happy life, working and playing. Many of you have read the story of my son. (If not, you can catch up here: Andy’s Story) We raised Andy from the beginning to be as independent as possible, and he is. He works every day, attends community activities, cooks his own food. We are working toward the day where he can live independently in a home with a few others with similar needs and interests. But as much as I want this for him, I am already mourning the day when it actually happens.
Right now, I can’t imagine not seeing his face every day. Knowing every little thing he is doing. Getting a smile and a hug morning and night. It’s a few years off so I have more time to get used to the idea.
Soon, Andy will have a new “friend” or two to help him on his road to independence. He has qualified for what in Ohio is called a Level One Waiver. Basically it provides funds to help people with disabilities live in their own homes, participate in community activities and various other aids to maintain or improve their lives. We will use this service for transportation to and assistance with some of the community activities Andy is involved in. He insists we leave him alone at these events, and rightly so, but we still think he could use some one-on-one help. He tends to move to the outer edges of activities like dances and excercise classes and we think a “buddy” could help get him more in the midst. We are hoping for an energetic guy or gal who will do things like take him to the mall and swimming, play video games with him, shoot hoops, get a pizza, just hang out.
These are things most typical young adults do alone. Andy just needs a little help apart from Mom and Dad. That “apart” is the concept that is difficult.
So, while his Dad and I welcome this new step, we also know it is the first step to his truly independent life. We are not worried about who the caregiver will be – we will choose them based on their reputation, recommendations from other parents and what I call a good “vibe.” We will find someone that Andy will bond with. We’ve started the interview process and found that there are wonderful, caring people among these providers. No, I think what I am most worried about is embracing his next step away from us.
I will take a another deep breath and let him go with open arms and a prayer.