What if…?

I hear my friends either joyfully or sadly announce, “I’m officially an empty-nester.” They question, “What will I do now? How will I handle it? Should I get a new hobby, begin travelling, go back to school?” Perhaps they start taking those cooking or art classes they’ve always dreamed of or begin a new fitness workout, take up dancing or meditation. Some turn one of the extra rooms in their home into the room they’ve always envisioned with white furniture and glass items that they always worried before would get broken. I see my friends free to go away for a weekend (or a month) without worrying about who will watch the children or whether they’ll be alright on their own. They begin buying “toys” such as boats and motorcycles and recreational vehicles or pick up old hobbies put aside long ago while raising a family. Some struggle a little or have a desire to nurture or help others, and I see them get new puppies to care for, or begin volunteering at a local shelter, food bank or hospital. Some have changed careers or retired and are now pursuing various other dreams.

The Empty Nest; I’d like to try it on for a couple days. I can’t quite picture how it would fit or feel. I don’t see that vision in my future. I shamefully fantasize about it, picture various ways I might imitate or pretend it exists for short periods of time. I even try to feel what it’s like for those who struggle with the empty nest, not quite able to step into their new role, and I feel for them. I dream about care-free vacations, sleeping late on the weekend, leaving my house without a plan or time I have to be home.

I’ve seen my friends who have children born with special needs or who have acquired physical, intellectual, and emotional disabilities or health challenges go through various stages. I don’t know if there are actually stages someone has clearly defined, but as I’ve seen myself and my friends go through life I’ve noticed these stages evolve. I would identify them as birth (or time of acquired disability or challenge), school and transition years, adulthood, and then aging of parent and child. Each of these stages carries its own unique set of rewards and challenges as we work through the doctor visits, IEP’s, therapies, parenting our other children, socializing, friendships, family time, finances, and so much more. Every person has their own way of dealing with these challenges and finding a way to work through them until they finally come to acceptance. We deal with a full range of emotions from joy and excitement to fear, grief, anger, disbelief, happiness, overwhelm, exhaustion, love and appreciation. Some find themselves questioning why me or why my child? Most of us learn we have gifts we never knew existed such as incredible strength, the ability to advocate, patience and more love than we ever thought possible.

As I find myself in this new stage of the aging parent actively parenting adult children with multiple challenges I know I will find the acceptance I found in each of the other stages and that brings me comfort. The burning question at this point though is a little different, not one that can be answered simply, yet one we are all asking when we dare. What happens when we are no longer able to care for our child who is unable to fully care for themselves? We have taught them as much independence as we can and we continue to guide them to reach their highest potential. We know if we don’t have a plan someone will decide this for us, or rather for our children.

The question turns into more questions as we watch others face the challenges of caring for their children while trying to care for themselves as well. What if that time comes suddenly and there is no plan? What if we have not yet been able to set up a trust (or don’t financially have the means to do so), haven’t got a will in place, a plan laid out, or answered that ultimate question of where they will live, with whom and how much time do we have to figure all of this out? Will someone care for, love and advocate for your child’s best interest? Will they fully accept, honor and value the person they are? Will they see the abilities rather than the disabilities, the possibilities and potential rather than the unachievable? What if…?

I moved across the country over ten years ago and saw one of my good friends the night before we left. She has a son who has Down syndrome and is a fun-loving, active young man who has a curiosity and love for life but certainly needed loving guidance in all areas. We joked about growing old and keeping up and she laughed and said to me, “I just have to live forever.” Unfortunately that did not happen, but she had built a support system and as soon as she was diagnosed she invited those special people to be in her life for the time she had remaining on earth. Together they made plans for her son’s future and that plan is being supported. I admire her courage, strength and openness to invite others in to her life, and be with her during her final days to support her and her husband and son. She remains one of my role models and reminds me that we have to be open,  and build a support system of people we trust. What if you have unanswered questions but have a support system, will all work out as it should? What if being surrounded by people you trust is the answer to all your questions? What if…?

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5 Responses

  1. Probably the most difficult topic that you can post about short of the death of a child. I know Adam can never be left alone for even a few minutes. I know that his rehabilitation is a daily event. I know that Adam is vulnerable and every need must be attended to. What happens when my wife and I pass? Financially, he will be secure. In terms of housing, it’s taken care of. Finding a person/persons who we can trust…..? I hope my daughter steps up to the plate, but she is two years older than Adam. A community of support…none that commited! Many, many people have made promises, then fled and disappeared. Family? They disappeared quicker than friends. This question is the black hole for parents of severely disabled. I blogged about this one and either no response or a large NO!, people can’t even consider the possibility or bring it into consciousness. It was brave to bring this to the surface. I only wish I had some constructive answer.

    • Phil, so true! I can’t believe I’m going to put into print the next few sentences but here goes….I have 3 children that will always need supervision. Two of them need complete care. A few years ago I had some fairly severe health conditions and we made a difficult decision to place one of the children in what here is called and ADH home (adult developmental home). We would continue to search for a placement for our other daughter if we could find a good home. This differs from a group home in that it is a private home and they live there and become part of that family. None of our parental rights or guardianship are taken away. We still make most of the major decisions, while the other family makes day to day decisions (what they eat, participate in etc). It took us 2 1/2 years to find the right home. It was someone we felt we knew well and loved, a single mom with 2 older children at home. We went through all the stages of grief while going through this placement and when the day came it was very difficult. 3 months later when I brought up a situation I was not happy with in the home the woman quit. We brought our daughter home immediately. A year and half later we are still trying to mend the damage done physically and emotionally for her and us. Her hair was falling out, dried and broken and lice infected. Her clothes and personal belongings were filled with roaches, dead and alive, and had to be thrown away, her vision was further impaired (the initial condition I brought to their attention), her behavior out of control and other things that are too horrible to put into words here. We saw her often, thought she was ok, but when I go back and put the pieces together I realize how these things were able to be hidden from us. I have chosen to put this here rather than a private note so others that have no idea why we don’t place our children and just get on with life can see. Our story is not an isolated incident…this is a common story. Trusting, especially after our experience is extremely difficult!! Now I am facing new health challenges so these questions have been on my mind again. I thought perhaps yesterday I may have to be looking at emergency placement. Today I am stronger….time will tell. This is the single most difficult question we face and no one I know has a clear cut answer.

  2. That took a lot of courage to tell, and yes you are stronger for it. Sometimes it sucks to keep get stronger (LOL) Also I have decided to remove the word empty nester from my vocabulary !

  3. Brings to mind the scariest “What if…?” of all ~ “What if there’s no one out there who will care for my child the way I do…?” This is the elephant in the room for every parent of challenged children that I know. It’s there, it’s in the way, it overshadows us constantly, and the solution eludes us time and time and time and time again….

  4. I too envy the empty nesters. The last time my husband and I even went out to dinner without our son was over a year ago. I envy couples who go out to dinner with friends, or take a weekend trip. I envy women with girlfriends. who can go out to a movie without feeling guilty that they left their grown child at home. Friends? What friends? They all found it too difficult and to uncomfortable to maintain a friendship with us as our son became older. Who will take care of our son when we’re unable to? Our daughter? She’s 7 years older and has spent the past 20 years battling a very serious illness. She may not be able to care for him and is it fair to expect her to commit the rest of her life to him? I think we perhaps we should try to find a residential placement for him while we are able to help make the transition. It seems to be the only way that we will be certain our son will be cared for through the end of his life. But for now, he’s at home, being watched after by his father, who is retired, while I work and that works for now. But, we’re getting older and I just pray that one of us will outlive our son.

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