by Jamie Bruen
Recently it was mentioned how the world might be better without people with disabilities to a friend. She asked how I would have handled it, how words like that make me feel, if it is worth speaking out in anger.
My son, Liam, is 99.9% physically disabled and is on life support.
I will make no false pretenses. This life is hard as a parent to a child that needs medical care 24/7. My heart breaks everyday. The one person in the world I love more than anyone or anything I can not heal. I used to say “I cannot fix,” but that is wrong because Liam does not need fixing. He is perfect. A perfect human soul in a very imperfect world. If anything needs to be fixed it is the attitude of people towards others with disabilities. Or the belief that someone such as Liam is a burden and the world would be better without him.
Liam only knows love and asks for people’s time and interactions. He has had a life of 8.5 years that has been filled with more love than most humans will ever know in their entire lives. The love is selfless, giving and only asks for love back.
Liam is a typical 8 year old boy in every aspect other than he can not move, breathe, swallow, or have command of any muscles other than his eyes, tongue and fingers. A person could easily think that this might be torture or a life of no purpose. But I and many others can attest to him being the happiest child we have every met. In a world that is blinded by materialism, self-indulgence and instant gratification, Liam’s life is in complete contrast to that.
Liam’s loves include school, basketball, YouTube videos, sword fighting, and most of all spending time with people. At school he uses computers and communication devices that he can control with finger switches. He takes pleasure in watching others play sports and he recently has begun to want to play, which he does with a lot of assistance. Words can not express the beauty of seeing other children realize that there is more to Liam than just a body that does not move. The children learn to communicate and assist him and most times want to be the ones helping Liam. Liam usually loves the attention. I have taken the approach with Liam, from the beginning, that we will answer questions, rude comments and stares with kindness and as a way to educate. Rarely do we shy away from others and Liam has heard that he needs to do things differently or needs extra help than most people. Never that there is anything wrong with him or that he is a burden. Liam loves these interactions and the friends he has made. And yes, the children get to know him and accept him and are his friends. He has invites to parties, friends that come over to our house and outings out with other children. There are not as many as what a typical child might have but they are invites and friends that are genuine.
As a mom who is a caregiver my life is different than most. Liam requires 24/7 medical care and there is the physical and immense emotional stress from having a child that I need to outlive. I no longer work outside the home as a teacher and focus my life on ensuring he has the best life possible. My life has completely changed and I am at the mercy of others for things as simple as a shower or to leave the house. People might think that my life is lacking but it is just different than most. I have given up trying to control life, which in itself is freeing, and instead am trying to enjoy the lessons Liam has taught me. There is isolation, fear of the future and a life that many don’t understand and question. I can now tell you that I know what real love is.
The love for Liam is like nothing I have experienced. The love that my family and friends give to us is a love that humbles me. Because of this, I know what it means to live fully and take pleasures in the small things. I know the beauty of genuine relationships with people. I know the beauty of loving a person that might look like he offers nothing but in actuality has given me the world and a different type freedom in return.
***Jamie Bruen is a former Physical Education Teacher. She now is mom to Liam and her roles include being Physical Therapist, Occupational Therapist, Respiratory Therapist, Speech Language Pathologist, nurse, advocate, and countless other things. In her free time she is an avid home baker and weightlifter.***