Alone for the Holidays
Alone for the Holidays
It is Thanksgiving Eve, or rather it’s Thanksgiving. It is 12:30 in the morning and I am finally able to sit down and write this article that I have been trying to write for the past two weeks. I am currently in my office with noise cancelling earphones on, drowning out the sounds of a temper tantrum while listening to Alanis Morrissette’s meditation album. I am trying to remain calm, but the anger and isolation still have a way of finding me.
I am not angry at Josh. I mean he is driving me crazy with the screaming, but he is nonverbal, and this is a form of his communication. I know there is nothing that I can do for him now, except to let him get it all out until he is calm again. I am sometimes envious of him. He has an acceptable reason for screaming; sometimes I want to scream and flap my arms, too. Life can be unfair, especially if you are a special needs family.
In a few hours I will cook a feast for three: my son, myself, and my ex-husband. It wasn’t always like this, but the older my son Josh got the more the invites decreased and eventually stopped. I would like to say it was because we moved away, but in reality, invitations stopped when Josh was about three, and we still lived close to family.
My son Josh is now twenty. He has a rare disability called 1p36 deletion syndrome. He is non-ambulatory (doesn’t walk) and non-verbal (doesn’t talk) He relies on me for all of his daily living needs and will for the rest of his life. It sounds awful on paper, but real life he is the best person I know. He is the light and love of my life. I am not saying it is an easy way to live, because it’s not. However, if our society became more inclusive and accepting it would be a whole lot easier, but that is a story for another article. Today I am here to write about holidays.
When Josh had his first birthday, I invited about seventy-five people. I really didn’t know how to exclude anyone. Out of those seventy-five people about 45 showed up. His second birthday I invited the same list and about 35 showed. His third birthday I invited a larger list, because he was in preschool, so I invited the entire class about fifteen people showed up. It was his fourth birthday that broke my heart, only five people showed up for him. Four of them were his grandparents, the other was his cousin, because his grandparents were babysitting her. I had felt the sting of isolation immediately after his diagnosis, but this cut deep into my soul. I realized we were alone, and our child would not be loved by friends and family. We had to learn how to deal with that heartbreak.
My answer was to move, so we sold our house and moved 1,122 miles away from our family. We moved for better services for Josh, but I knew if we didn’t live near family, we could pretend that they still cared about him. We eventually moved closer to home, but neither Josh’s dad nor myself were willing to live close to family again. However, for the past thirteen years we have lived 363 miles away from our hometown. It takes us just over five hours to get home, and not once in those thirteen years have we been invited to one holiday or family celebration.
The last time I tried to connect with the entire family was a few weeks before Josh had a spinal fusion. I wanted them to have a chance to see him, shower him with the love he deserved, and possibly say goodbye. We didn’t know if Josh would survive surgery, but it was a necessary procedure. His grandmother invited the entire family over, aunts, uncles, cousins, and no one showed up for him. I was crushed and angry. Again, I detached. I couldn’t experience that pain anymore. I had some decisions to make. We can’t remain angry all the time. It’s not fair to us. It also causes inflammation and sickness in our bodies. I don’t want to feel that pain every time I connect with family. Even if the rejection wasn’t directed towards me it was directed towards my child, and that is a different level of pain. Protection mode turns on and our walls start to come up. All we want to do is shield our children from that kind of ignorance.
Several years ago, Josh and I spent Thanksgiving and Christmas alone. My mom was the only person that called to wish us happy holidays, that was the year everything changed. I am a big believer that if we change our mindset, we change our life. That was the year Josh, and I began taking our adventures.
I will admit the holiday adventures became a bit chaotic, but we still do it for his birthdays. We typically go to Disney, because my son loves Epcot. I mean he loves Epcot. When we walk down the streets in Epcot, he is so happy that strangers dance with him, talk to him, wave to him. My kid is in his element there. We no longer take our adventures on the actual holiday, but we do have one around the holiday. This week we will have a day of swimming and for Christmas we have our tickets for Disney on Ice.
Now, we celebrate the holidays on our own terms. Josh’s dad and I may not always see eye to eye, and even though we are separated we are still a family unit. The isolation from the rest of the family gave us a unique bond in that way. Don’t get me wrong we still have our issues, but we know what it is like to not have family around, and neither one of us wants that for our son. Our new traditions: Josh and I share a second dinner around 10:30 at night on all big holidays. Josh thinks he is getting away with something, and it is the cutest. Every Christmas, Josh gets to pause with opening his gifts, sometimes it takes days to finish opening them. He gets overwhelmed and bored at the same time, so we do what makes him happy. We have no agenda or anyone to appease. We snuggle and relax on the couch and appreciate that we at least have each other. It’s not the picture-perfect holiday, but it’s ours.
I still feel that twinge of anger and sadness that creeps up, but I am able to move past those feelings quickly. My son’s joy is my greatest happiness. I can’t make others see his light. I can remove the people that don’t deserve him from our lives. Over the past few years, I have started to create a community that is ours. I get choose the people that are in our world. We only accept those who see our beauty and love us for our quirks.
Happy Holidays. May you find those people that love you and your family for calm and your crazy.
Written by: Michelle Finn
If you are feeling the isolation, you are not alone, and I am sorry that you have had to experience that pain. I have a new program for special needs moms starting at the beginning of 2023. This program will offer a community of other special needs moms that you can connect with. There is power in community. If you would like more information or be put on our waitlist and be the first to be invited press the link HERE
