Off To A New Year...Eager To Make a Difference

It was a dark, lonely hole with a tight hold on me. The harder I tried to fight it’s grip, the tighter it seemed to grab me. Some days it consumed me. Some days it shut me down. Some days it totally defeated me. But on those days in between, I would come up for little gasps of air, and that got me through the roughest times. Ok, that and a lot of support from the outside. Caring for a child with mental health issues can be a tough challenge to navigate. And doing it during a pandemic year brought even greater struggle.

When I look back over this last year, I can’t help but feel a sense of gratitude for the growth and steps I have been able to take in a healthy direction. Yes, a large part of that comes with having our child functioning better. But I also realize that it has also involved a shift in perspective.

It was about a year ago, that things with our son had hit an all-time low. Things at school had grown miserable, and we faced a daily battle to even get him to go. Several attempts during IEP meetings left me feeling disregarded, dismissed, and demeaned. It was an uncomfortable and heart-breaking situation to try and advocate for your child and feel so misunderstood.

For a parent who much preferred people pleasing, this road of advocating felt daunting and miserable. I had to speak up, confront, and make his needs known. And when a child struggles internally to the degree that our son did, it was no easy task. When the best laid plans of an IEP were not being followed, I had no choice.

I felt like I was continually being patted on the head and either told that “everything was fine” or that "he was just too comfortable being aggressive." But I knew things weren't ok, and nothing about his heart was naturally aggressive. I heard his many pleas for help. I saw his desperate attempts to voice his pain and be heard. I experienced right along with him the very dark and dangerous thoughts that haunted him. It felt like our whole family was being traumatized through this experience, yet no one really understood.

Slowly, throughout the year, I was able to find some great help through community resources, a great sped advocate, a wonderful doctor, medical testing that filled in some voids, a change of schools, and a better fit on medication. We were able to piece together some very complex pieces to our son’s puzzle. I began to slowly gain a little perspective.

One day, as I came up for just a little air, I sat down to write. Sounds crazy, I know, but for a writer like me, it can be therapeutic. On this particular day, it appeared a poem was to tumble out of me. Now that in itself is rather strange, as I have NEVER written a poem, EVER! Honestly, I don't even like poetry. But I trusted my gut and just started typing. What came out that day brought me to tears. It truly revealed the painful and heart-breaking journey of raising a child with mental health issues, especially when it isn’t always seen or understood.

This poem brought for me, a real shift in my perspective. It helped me realize why the road felt dark, lonely, and consuming. It put to words the pain that had etched so deeply on my heart and burned in my gut. This is what rolled out of my soul that day. (And yes, please excuse, all the poetic injustice, as you remember, I am NOT a poet…and I DO know it!)

They see my child with a quick glimpse or two.

Then watch from a distance to see what I do.

They notice he’s loud, mad, and blowing a fuse.

Then quick with their judgement for what he will choose.

It’s an invisible disability,

Lacking what appears emotional stability.

Behind what looks normal they’d never guess,

Nor would they take time to fully assess.

They don’t know the anger, fear, worry, or dread,

Or even his sad, truly solemn wish he was dead.

While other kids play outside at the park,

He spends his time fighting a way out the dark.

Appointments, interventions, all carry a price,

Hopes of finding some relief, that would be nice.

No matter how hard he works and he tries,

At the end of many days, he falls, and he cries.

There’re desperate attempts to try and belong,

Hard lessons and struggles with friends, to get along.

We role play and practice and give it our best,

But fail to see others stand the same test.

Slow steps of progress are often not seen,

Feeling broken, tired of trying, or something between.

He says others hate him, I assure him they don’t.

He screams he hates me, and I pray that he won’t.

Quite certain I’m not built for this difficult course,

God grant grace for this journey, your love as our source.

Aid others in understanding the burdens he bears,

And give me the words for the hard thoughts that he shares.

Help us capture his heart in a real true way,

Guide and support us through each tough day.

Whisper his name when I can’t be near,

Remind him he’s loved, truly valued, and dear.

Place your guardian angels along his way,

Give him true hope and joy until a brighter day.

Of course, as soon as I wrote it, I had to title it. After much thought, I titled it…Hope for Invisible Disabilities. Then, I took a breath and a very bold step. I shared it in a couple support groups I am in online. The response was life-changing. There were over 300 people who commented on it or responded in some way. It proved to me that this journey was one shared by many.

You see, the darkness of this journey can cause us to suffer alone. We become private. We start to internalize all that is happening, letting doubt, shame, and guilt begin to weigh us down. We begin to buy into the lies that there is no way, now hope, no answers. The truth is, we live a life that not everyone can understand. Those who do, will get it. Those who don’t, can choose to learn and understand or continue on in their own darkness. It is our choice to help illuminate the path and bring light to these issues that are so misunderstood.

I look back and see how this writing, sharing, and risking helped me grow in numerous ways. My passion to help educate and support parents who are raising a child with mental health issues has stretched and grown by leaps and bounds. I am invigorated with a new sense of purpose, hope, and the ability to help make an impact. And that sure beats that feeling of defeat, overwhelm, and hopelessness of a year ago!

So as I picked my word for the year (which is a simple way to sum up resolutions, for those who struggle with that word or the pressure it creates), these thoughts raced through my mind. I wanted to connect with people. I wanted to show courage and step out boldly. I wanted to take action on the many things that I have wanted to do, but let sit idle. I wanted and desired to make a difference...have impact.

I want to take the trials of the last year, the pandemic, the struggles we have experienced with our son and use them for good. I want to encourage other parents who might be experiencing a similar journey and make a difference.

So if I were going to try and make a difference, connect with others going through stress, challenge, or a similar situation, and take action in some way, I would want to help inspire hope in them. I would simply put this poem in an envelope and add a sticky note that says, “You are not alone. You matter. I see you and understand. I am here for you. Let’s do this!”

P.S. The Word for the Year has been a great help in giving me focus but avoiding the overwhelm of traditional resolutions. If you are struggling with that, you might like to read a recent blog I posted that can help you achieve your goals this coming year or a different blog that can help you choose your word for the year! Best of luck this coming year! You got this! I'm cheering for you!

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