I was absolutely blown away by the sheer numbers of people who not only read it, shared it but who also felt compelled to respond. I was relieved to hear people saying that my words were exactly how they felt, that the piece seemed to be written just for them and they wanted to cry because they UNDERSTOOD. I was thanked for speaking the truth.
Special needs parenting IS isolating. Unless you are living it, you have no idea how much so. I think that the important lesson I have learned here is the fact that although we are occasionally (or more so than not) feeling left out, isolated and alone - the proverbial "WE" of the special needs community is always out there waiting to give you a kind word and a sweet nudge in the right direction.
I learned so much about my fellow parents: that we ALL feel isolated and alone from time to time. I have found that along my path, a few people will try to "shame" you for feeling that way. As if admitting that life with a special needs child is hard is succumbing to defeat or that I am somehow less of a parent for not being the happy-go-lucky parent I wish I were for every second of every day. I also realize that the folks who try to shame you may be the very same people who would never admit to having a bad day let alone a bad moment where grief flickers in your heart.
Let me tell you now... life is imperfect. We all have bad days. Our kids have bad days. Everyone has moments in their life where they feel lonely, abandoned or shunned. It is inevitable. Shaming other parents for admitting that their lives aren't always easy and not owning the fact that these feelings exist seems so backwards to me.
I share our story in the hopes that our journey can help someone else along the way. I share the good, the bad, the ugly and all the parts in between INCLUDING the absolute joy in the little things AND the suffocating, heart wrenching loneliness that comes with all of it.
I always remind myself that the good days always outweigh the bad ones. I've learned to celebrate the small things and let the mundane issues fly right out the window. Letting go and changing my perspective has been hard and will most likely always be a work-in-progress. That pesky grief sometimes sticks itself in like a nasty little splinter. I pluck it out, smooth out the wound and move on with my day. However, it is inevitable that there will be another splinter... another heartache... another moment of grief.
To my special needs parents out there: Just know that it is normal to feel grief as long as you don't stay there for long. It is okay to feel sad as long as we continue to feel the overwhelming good that comes out of each day, too. We aren't alone in our isolation at all even though it can feel that way. We may be disappointed by the family and friends we thought would be there BUT how lucky are we that we have an entire community of people who are connected around the world by the very things that make us feel alone?!
Changing my perspective has been hard. Letting go of the people I expected to be here was hard for me but I'm lucky that with each person who has stepped back - several more have stepped up. Sharing Abe's story has changed my life. Sharing him with people who understand him (and us!) has made this journey easier. It has been wonderful connecting with and falling in love with children from around the globe who share a similar life.
We are lucky even in our isolation.
Some of my favorite comments on my post regarding the isolation of special needs parenting are as follows:
- "Thank you I felt like I write this myself. Your words are refreshing to an on going internal struggle to feel whole."
- "A lonely life, I would not trade"
- "I am alone with you"
- "Thank you for writing this. You've put into words what many of us have to been able to express. I shared it on social media and it resonated with many of my friends. For those of us that have children with special needs, we could relate. For my friends who did not have a choice with special needs, they appreciated it because they had no idea. Thank you."
- "I'm 30 years in and have never once used or even thought to use the word isolation. And that word perfectly sums it up. My life. Our life. That word provides me with a sense of relief for some odd reason. Because it truly does describe our life. And even tho I'd never want anybody else to feel what I feel, I really needed to know that I am not alone."
- "Thank you for sharing your story it helps remind me that I'm not the only person who feels the way I do and to not feel guilty for having those feelings"
- "I feel like you literally unlocked my brain, and posted my words for me."
- "I can't even tell you what a relief this was to read. My son was diagnosed with Autism in November and I have never felt so alone in my life. Word for word this is our situation, and reading what I had already been thinking was emotional and relieving that I'm not the only one. It also saddens me that I'm not the only one"
- "Thank you for telling your story.The first time ever you put into words exactly how I feel! Its good to know someone understands."
- "Thanks so much for articulating our life to a perfect "I"!! It's very difficult to admit this and to put it into words "
Many people cannot fathom why I share Abram's journey. Many people think that it is wrong that I do so or that I "over share". However, if I hadn't shared our journey - we wouldn't have come as far as we have. If I hadn't share his struggles, I wouldn't have heard from other parents a litter farther on their journey on what to do, who to talk to or how to get things done.
If, after all that my son has gone through and will continue to go through can help another family or another child not feel so different, alone or isolated - than sharing this journey is worth it.
To those who are on my path and in my life - I can't thank you enough for sharing your family and your kids with us. All of you give me strength when I have none and make me so proud. My life. Our life.
This is indeed our life - that proverbial "we" of the people on similar paths. The hope we give one another. The absolute love and joy that we share. The grief we admit to and crush like a bug until the next time. The honesty, the friendship and the bonds that are just as strong as blood and who in turn become like family.