Christmas will be here in a few weeks and I’m taking a moment to reflect. I am sitting at my mom’s breakfast table, drinking coffee and watching my son type “remote control helicopters” on my laptop. At the age of 26 he is still learning and I am happy for that. I hope he can work or at least volunteer someday, contributing, giving something back to the community that helps support his care. He is usually a happy young man, but he still needs and depends on others to assist, direct and protect him, especially since he has the vulnerability of a child. He will never be fully independent, but he is at least starting to advocate for himself and others.
My friends, who also have young adults with disabilities, and I often visit about our hopes and dreams for our kids and who will be their caregiver(s) or overseer(s) when we are gone. It is a fear like no other. If our special needs kids/adults survive us, will they thrive or merely exist without our help, when left under the guardianship of someone else?
There are days when I wonder what would happen to my son and others who depend on me, if I died tomorrow? As I get older, the people whom I love and care for, occupy much of my time and make me wonder how they would do without me being a part of it. I know my daughter would have no choice, but to take over. I am not thinking about what my will specifies, but more of the hands on, day-to-day decisions that require more than an executor or overseer. How have my responsibilities affected my life and hers? That scenario sits in the back of my mind and raises its head often, but mostly when I am physically and emotionally exhausted. And I’ve noticed it happening more since I’ve injured my back and find I cannot do what I once did. I often become frustrated with myself that I have to take a step back. I appreciate when someone else steps into help me, but I still feel the guilt of not being the “perfect” mom, wife, or daughter.
Death is something none of us like to talk about, but it is a part of life. I accept and understand that my mom and husband, whom I love dearly, have already lived long and prosperous lives and are at the “evening” of life. Comfort for them is now my goal. My daughter is employed in a professional world and moving forward, for which I am very proud. She and her fiancee have many years to continue to enjoy their lives together and contribute to society. My son, however, is and will be dependent on the care he receives and at the mercy of others for the rest of his life… and that simply frightens me. My daughter understands that she will someday step in as his guardian to ensure he continues receiving the care he needs. But what will that do to her life, her family? Will it create a burden that she cannot handle or does not deserve?
My life has not been easy, but it has made me a stronger person. I am not afraid of taking on responsibility. But as a result of this, people also assume that I will just do what needs to be done and not ask for assistance from others when, in fact, I may really need it. The fact that I am “in control” communicates the wrong message many times. I need help and that is hard to admit and accept because it means I have to give up some of that control and let others make decisions that I may not always be comfortable with. I am trying, really trying. I must trust the nurses, doctors and caregivers who now help my husband with his day-to-day needs as I continue to try to provide emotional support and let him know I love him and want him to be safe. I must trust the doctors that work with my mom, trying to help relieve the excruciating pain she feels on a daily basis as I also offer emotional support and let her know I love her. I also pray that I have the strength to start letting go, to give my son the opportunity to be guided by others, hoping that they have his best interests at heart, thoughtfully guiding and leading him in a productive way with direction, compassion and diplomacy. And I pray as I take my last breath, whether it be tomorrow or years from now, that my daughter and future son-in-law will have the time, energy, love and space in their lives to include Lathom.