What If It’s Always Hard?
A small voice inside asked myself a big question that I’d been trying to avoid.
“What if it’s always hard?”
That question and it’s perceivable answer looms over me like a dark cloud.
Panicky thoughts emerge.
“This isn’t fair.”
“Why me? Why us?”
“Are we really bound to always having a difficult child?”
And then, on the footsteps of such thoughts comes the guilt. Oh, the overwhelming guilt.
Guilt for even thinking such things. Guilt for not embracing it all, regardless of how hard it gets. Guilt for wanting it to be different. Because if I even for a split-second wish it was different, does that mean I wish for a different kid?
No. No. No.
Even on my hardest days I can attest to the fact that I have never wished for anyone other than Jack, who is my special needs child. I could never and would never replace him.
But even the amount of love I have for him doesn’t take away from the fact that parenting a child with a disability is hard. A challenge without an end.
Some things do get easier. But the truth is that his disability requires an entire extra layer of parenting.
Parenting itself is hard.
And then for those of us with special needs kids, we get an extra level of hard to live with day in and day out. And it is not something that they, our kids, will just “grow out of.”
Like the terrible twos. It isn’t a phase or a season. It’s for life.
And sometimes, knowing that our child’s struggles and the daily challenges that their disability brings is something we will forever deal with, makes it really, really hard to embrace their disability.
Which is why we desperately need a community that understands us or seeks to understand us. A group of people that have walked in our shoes or are willing to walk with us in the hard, isolating, rollercoaster of joy and grief that we all must endure as parents of children with disabilities.
They are those that say, “I know this is really hard for you and I see you. I am here for you no matter how hard it gets.”
They are those that don’t shy away from seeing us in our most difficult of days and keep our vulnerabilities safe so that we can truly rest in the space that their friendship brings.
Our community may be family, friends, coworkers or even internet strangers that we connect with along the way.
The voice inside me felt small but it packed a punch with the reality I already knew.
Yes. Yes, it might always be harder than you expected. But that doesn’t mean it is unworthy of being good, too.
When I’m feeling especially overwhelmed from how hard things are, my community is there for me. Whether they are just showing up for me without me even asking or I am going to them with a need, which is something I’ve had to learn how to do, I have people in my life that I go to. They know the whole story, they know me, and they know my son. It’s all a vital part to being a part of my “inner circle” and supporting me through those especially difficult days.
Another way I receive support is through therapy, which has been an incredible way for me to work through the grief and hard stuff that this parenting role has served me.
If you are the parent of a special needs child and struggling with feeling overwhelmed and isolated, here are few things that have helped me build my community.
Join at least one Facebook group for parents of children with special needs or even one particular to your child’s disability
Search hashtags on Instagram and find some accounts to follow. You might search #developmentaldisabilityawareness, #specialneedsparenting or search for the specific disability your child has. So many of us share about our parenting journey and diagnosis journey and connecting with other parents or even professionals can be so helpful.
Have someone in your life that you can be truly open and honest with about how you are feeling. We literally cannot bear it all on our own so please don’t try and tough it out.
Consider therapy if you aren’t already in therapy. I started therapy over a year ago and am so grateful that I did. The only thing I wish I could do differently is go back and start therapy sooner!
I hope that after reading this you feel less alone in your struggle or feel a little more seen, if you are a special needs parent.
And if you aren’t a special needs parent, I hope this brought awareness for you and that you can have a better understanding of any special needs parents in your life and what they might be going through.
With love for my children, I rise to meet their needs. And while rising to meet those needs, I must also meet my own. Do not let grief, guilt or feeling overwhelmed stop you from taking care of yourself and seeking the best for you and your family, regardless of how hard it is.
Because when we ask ourselves, “will it always be hard?” and we know that the answer is some form of yes then we really need to seek out ways to thrive, not just survive, regardless. And come to terms that our “thrive” is likely different than that of our friends or what we even envisioned for ourselves.
But we can do hard things. Our kids can do hard things. And we can seek to thrive, even when life is hard.