Shortly after Larkin was born, I began to quickly meet many people with a loved one with disabilities. Those that have been home quietly taking care of their lives, some fighting the schools, government and medical institutions that seem to swallow us whole. Working, shopping, cleaning, sharing, going to church, raising, and loving their families just like the rest of the world.
Except to me, it feels as if I see ghosts. Like a Hollywood movie that is set in an elapsed, time period. Life and time moves so quickly for us while others are moving along at the “normal” clip that seems to elude us. We walk among those who have lives that do not focus on taking care of someone else that requires the ability to balance and juggle teacups and saucers. As if time is carrying me on fast forward and yet – I am right next to those moving at regular pace.
When I flew for United Airlines, one of the best parts of my job was sitting in the terminal watching passengers. Crew members in uniform hide in gate rooms away from people so that we don’t have to answer the standard 50 questions but we watch you. Watch your story unfold, your emotions, how you handle stress, how you handle life. That is how I watch people still, but the difference in me today is that in public I feel as if I am a ghost moving among those who move at the normal pace. I am not seen, my scars do not show, my wounds bleed internally, my hurt and yes even my anger is not often seen.
My life is so very different now. I am more observant of people and things around me. The way the sun is shining, the amazing smell of a spring day, rain falling gently on my face, absorbing a moment in time because I do not know if it will ever come again. I don’t worry about superficial things and find that I am having to work really hard on tolerating those around me that do so. Here’s a mental picture for you – I have had to literally stop myself from throwing my head back and screaming at the top of my lungs during a few conversations I have had to endure the past few months. Just screaming. Nothing to say. I just want to scream at the petty, absurd, and ridiculous things that I hear.
I also move with deliberation and caution to ensure that my well-being is intact. I avoid those who cause me emotional harm and I must do it because all of my energy and focus is needed elsewhere. I don’t have time to play games – not that I ever did, but now I pause and redirect around those that, for lack of a better phrase, just. don’t. get it. (and screaming really isn’t proper during conversation unless you are an infant needing to be fed)
There are many people just like me, living out their days with the worry about their loved one tucked deep away while tending to a job or task that requires attention. My job gives me an escape into numbers so that I can forget for a while the pressure of taking care of medical issues and all that it entails. I escape into the world of those who move along at the regular speed of life and I watch their stories. Sometimes I am surprised to find out there is another ghost next to me. Someone else who is escaping from reality for a while and stopping the superhuman speed at which we move and think. All it takes is a phrase or word and we instantly know we share a common bond. A not so secret club if you will
I have met many parents, grandparents and siblings on our time elapse journey who cry with me, laugh with me, just sit, and talk with me. The laughing part is what gets me the most because we laugh at things that would trouble anyone outside of our ghost world. Does the tinkling of our laughter sound scary? What we laugh at would curl toes, make the hair on the back of your head stand on end, and cause fainting or screaming for most.
Today I laughed with a mother in a way that only she and I understood. About things that only she and I could find humor in. I noticed the other people in the cafe glancing at us from time to time and that only made me laugh harder.
We ghosts have a way of making people uncomfortable.
This is Joyce. I just loved this post and so needed to read it today. Thank you.
Another gem my friend.The laughter is my salvation.Even and most especially the moments that might appear to the outside world to be inappropriate.The other part that I so relate to is the intolerance and need to scream at those who spend so much time with the insignificant.That part of me,the intolerant part,has morphed to major proportions.From one ghost to another … thanks for another goodie.
Oh Amy your words and thoughts are so inspirational. I am so blessed to have met you and kept in contact. You have me crying harder now than I have ever done…I have a lot on my plate and right now feel like I am standing in the middle of a cyclone…sreaming for answers, for hope, for security, for knowledge…for peace of mind…waiting for my answers to be heard and answered all the while seeking guidance from above. I am in a spot now where my faith and trust is completly in his hands. Although we will be moving many many miles away I will continue to try and stay in contact, read your updates and think of your family daily. Amy you have really touched my life with your story as well as many others. I know that although many of our situations are different we all have similar things in common. I thank you for all you continue to do with LP and with advocating for so many out there. You are a true inspiration. BTW we flew united to and from Yuma, AZ and the flight attendants were amazing! I met one who had a child with high functioning autism and we shared our stories with each other, our hopes and fears. Who knew that on that flight I would find another who like me had many of the same concerns, fears and hope all in one. She mentioned that when she tells people of her son the response is I’m sorry and we both agreed that if we had to choose it all over again we would choose our children just as they were handed to us! We both agreed that we hate it when people’s first response is I’m sorry. How about, What special blessings you have in your lifes. I think you can relate! Thinking of you always and hugs to you and your family…from the Bates family!
I love you, Aim.
I always enjoy your posts. I would rather be a ghost than never have the life I do!
I wanted to let you know about the T21 Travelling Afghan Project! I hope you will consider participating and I would appreciate it if you could help spread the word! Thanks!
Amy – thank you for one of the best mornings I have had in a long time. After you told me about your blogs I decided to read about the “ghost”. And of course, after that I had to read everything you have written that is still on the site. I cried, laughed, and laughed some more, got angry (at the perm lady), and most of all sad. Not sad for you or Larkin, but most of all for sad for the lack of compassion, sincerity and respect demonstrated by so many people in our society today. I do not have a special needs child and cannot even begin to know what a day in your life is like. But after reading about you and Larkin and your family I know you have been truly blessed in so many ways. By the knowledge you have acquired to be able to help others; by your faith that shines through in your words; by the friends that you have made throughout your journey; and most of all god has blessed you with Larkin. When I read of you wondering what kind of relationship you would have with Larkin; I knew in my heart that you already have a special bond with your daughter that most moms would dream of having. Your heart and soul comes out in each and every word you speak of her. Not only has god blessed you but he has blessed us; by giving us a person that is so passionate and cares enough to work so hard for a place for our children to play safely, to interact together and never feel left out. Your words touched my heart and soul and opened my eyes to so many things. Thank you, for all that you do for everyone. Your spirit is one that I’m sure is desired by a lot of people. And if not, it should be. Oh yea, forgot to tell you – “I get it”!! Too bad so many people don’t; they’re really missing out.