In July, I wrote a piece on the isolation of special needs parenting. I've been taken aback from the response that I got and the fact that people from around the world (literally) read what I had written and it resonated with them. I heard from attorneys, research writers, bloggers, teachers, therapists, moms, dads, grandparents and everyone else in between.
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:
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.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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