When you are the parent of a child who has a disability you can feel isolated. You begin to not go out, to not seek friends and scared of judgement. You don’t complain, because you fear people will think you are not a good mom. You try to promote your life as a Hallmark Channel movie and not a Halloween one. Then the holidays come and you are slapped with the face of reality. How to get through the season when you feel so alone and trapped in this unexpected life.
The first time I read a news report of a mom who broke, I vowed I would do my best to make sure another mom would feel so alone. I imagine she felt that no one would help her. I can only guess what straw broke her faith. A parent at the end of her rope, tried to kill her daughter and herself. A decision I cannot imagine making. One of sacrifice and crime, to feel there is no other recourse. I will never judge this mother; only offer her compassion and empathy.
I have been incredibly lucky. I have never felt that alone. I have felt discouraged. I have felt overwhelmed. I have felt that this life sucks and is unfair and God has forsaken me. I struggle, daily. I do not portray our life as all sunshine and unicorn butts. I make a determination, daily, to see the light and humor of our life and not focus on the abyss.
Sadly, our family is in the minority. I have a friend who “hit the autism jackpot”. Four of her six children are on the spectrum; she will be caring for them for the rest of her life. Another friend’s child had a brain tumor that while cured, left her daughter as a life-long four year-old. Bridget is non-violent, but her frustration level remains high due to her lack of communication. I do not know how our psyche would fare. I hope that our village would still exist.
I have faith in our village of support. I know it is because it has been built on friendship and mutual support. I also know that most people in our situation do not have a community. One they can count on to see them through the triumphs and tragedies.
If this post is speaking to you, if you are in that majority of special needs parents who are alone. I imagine you are facing this holiday season thinking holy crap we are not going to survive it. You know that you either have to decline that party invitation or brace yourself for your family not understanding why you son has to sit with his headphones on. You are thinking of the company that will come to your house and how your daughter will have a meltdown.
The holiday season is not full of joy and light for you. Instead it is filled with questions of why there is no picture with Santa or why there is no menorah. You want to answer because Santa induces panic or the menorah is a fire hazard. That there are no presents under the tree because you child needs therapy equipment you are saving for and not a new shiny toy that they will not play with.
I want you to know you are not alone. It is okay to feel despair. It is okay to feel that this child is not only the one you didn’t sign up for but you really wish there was a return policy. It is okay to be sad, to grieve and to want to just stay in bed.
Just don’t feel alone.
There are so many of us out there that do understand. You can lean on us. You can vent to us. You can celebrate with us. We understand the huge milestone, when you child eats a bite of mashed potatoes. We get how blessed you feel when they jumped off the curb. We know what is important.
And your family’s feeling that you are not doing it right? That is not important.
We are you village. We are your tribe. We will be here for you. The best part of social media, one of us is probably on when you need us.
Reach out and let us hold your hand.
We will Leave a Light On for you.
I am so proud to have been asked to support Care to the People’s holiday initiative. Care To The People is raising awareness for the struggles patients and families face during the holidays with a simple campaign asking people to show their support on Facebook and Twitter. We are asking people to #LeaveALightOn to show they are available to be a resource and source of support for anyone going through a hard time — the 21st century version of the holiday tradition of leaving a candle in one’s window to welcome visitors.
Please join us and share.
I can’t think of a better person than you for those who need help and support. You are honest and caring and compassionate. There need to be more people like you. Thank you for being you.
Thank you for this–the isolation is difficult and creeping. Thank you for bravely holding up a light for all parents of kids with disabilities. I definitely feel alone much of the time, but your message of understanding alone has gladdened me.
I’m here and I understand. It is so very difficult and way more than we bargained for. I will be sending very positive vibe your way
you are amazing in more ways than you realize ❤
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