Today is Thanksgiving Day. Soon my home will be filled with family gathered around an enormous thirty pound turkey with all the trimmings. We take turns hosting the dinner each year but the menu never varies. It is traditional and comforting in its predictability. Any creative deviations meet with serious displeasure. The food will disappear all too quickly and groaning satiety will be our after dinner music. Before it all begins I want to take a moment to remember the things I sometimes take for granted. The things, that as the mother of a young woman with disabilities, I should be thankful for everyday.
My husband – George has always been an involved and loving father. He has held my hand through all the trials and tribulations of raising Lauren. He continues to help in Lauren’s physical care and in making sure that Lauren has everything she needs. How long can I continue to expect him to provide the level of physical care and emotional support that he considers his responsibility? Time doesn’t care about responsibilities. Time will take its toll on our abilities and faculties regardless of our wishes. George will soon be 74. He is doing well. I hope time is kind to him...and me.
Lauren’s services – Without the funding that allows us to hire individuals to support Lauren, I would not be writing this today. My health and my body would not have held up without the help of other caregivers. Lauren’s needs are extensive and unending. There are so many families in this same situation that have little or no services or supports. I can’t imagine how they get through each day. I couldn’t have.
Lauren’s Direct Support workers – Each day I place my child into the hands of other people. Because of the wonderful women who are Lauren’s DSPs I am able to do so with complete faith and security that they will care for her with kindness and keep her safe. We need to provide the wages and respect for this position that will attract more individuals like these to careers as DSPs so that every family can be thankful each day that their loved one with a disability is well cared for.
Family – I get to spend this day with my family. Not everyone can say that. There is security in knowing that if I ever needed them, one call would bring someone running. There is closeness yet a point of disconnect. There is no one in the family who participates in Lauren’s care and no one who has expressed any interest in doing so in the future. I wouldn’t want them to take over Lauren’s day-to-day care but I worry about who will manage her life when I no longer can. Will her future fall into the hands of a stranger?
Finances – We are able to provide Lauren with the necessities of her life and a comfortable, accessible home to live in. That will not always be the case. George is still working and we have planned for her future as best as we can. But, there is no way that we will ever be able to provide for Lauren for the rest of her life. Her needs are too extensive and expensive.
Friends – Over the years I have met many moms of children with developmental disabilities. Some have become very good friends. We raise each other up when we’re down, we share information and educate each other, and we find humor in the craziness that is our lives. We need each other and treasure our friendships, even though we often can find little time for each other. Our common bond of children with special needs holds us together as it creates barriers for other friendships. Friends I have had in the past have drifted away unable or unwilling to understand my life or Lauren’s. My child wasn’t going to soccer games or dance class. My child wasn’t invited to birthday parties. I couldn’t hire the teenager down the street to babysit. My life was too restricted, too sad for them to deal with. Truthfully, I hope I would have been different if I had been in their place, but I’m not sure I would have been. If you haven’t lived this life, can you possibly understand it?
Country – How fortunate are we to live in a country where we do not experience the horrors and atrocities of war on our doorsteps? We live in a country where we are free to speak our minds and where our disparate opinions and beliefs mold rather than tear apart our stable way of life, a country that, with all of its faults and inadequacies, tries to care for its citizens and respect human rights. But, will people with developmental disabilities, those most poorly equipped to speak up, to demand equality, to express their needs, ever really be accepted and valued by their fellow citizens?
How fragile are our blessings. How important it is that we nurture and treasure them while we have them. I hope that you can count many blessings today. Happy Thanksgiving to you all.