Tomorrow…We Walk for Noah

Tomorrow we walk. If you’re new to this blog, you may not be aware of a cause that is close to my heart, one that I have made my choice and mission to advocate for. Mental Illness. My son, now 12, was diagnosed with his first mental illness at the age of 5, ADHD. As the years passed, additional diagnoses were added. This list is long, and not always agreed upon by all of the specialists he’s seen. To date, these are the illnesses he’s been diagnosed with, at some point or another.

ADHD – combined type, Mood Disorder NOS, Asperger’s, Anxiety, Depression, PTSD, Oppositional Defiant Disorder, Developmental Coordination Disorder, Cognitive Disorder NOS, and Pervasive Developmental Disorder. In addition to these, there have been considerations of other illnesses – but to date they’ve not been confirmed or diagnosed.

This is quite the list, right? It is easy to look at this list as his mother and feel defeated, hopeless and wondering how you’ll ever make it. How you’ll ever possibly give him enough, teach him enough, parent him enough, love him enough…to make it all okay? And this is when you have to make peace with the fact that indeed, you may never be able to make it okay.

This is a large, awful pill to swallow. A hard thing to accept. That we as parents, can’t take away all the pain our children feel. I mean really, since our littles were itty bitty, they’ve run to us, tears streaming down their face, when they’re hurting. And we crouch down, get to their level and open our arms. Ready to surround them with a gentle hug, hands at the ready to wipe away their tears, voices softly reminding them that we are here. That all will be okay. And we say this. Over and over again. Hundreds of times likely, during the course of their childhood.

And now that he’s 12 and we’ve been through this list of illnesses that I can’t make okay, I feel like a big, fat liar. This is it. This is the big a-ha moment for me – at least for this month. This is one of the hardest damn things of these diseases. They’re hurting my baby. They’re infesting his brain and body, like cancer. Attacking his being. And I can’t do a damn thing to make them go away. I can’t hug and hold him, kiss it and make it better. They will live there. In his brain. For the rest of his life. And I can’t do anything to change that. I can’t fucking fix them. And it makes me so damn angry.

This anger fires me up, pushes me to seek more support, more treatments, more knowledge for Noah. This has become my full time job. Advocating for him and his needs. The job is not an easy one. Because while searching and seeking, I am also caring and supporting. Managing his doctor appointments, and therapist visits. Coordinating and tracking medications and changes to them. Keeping a notebook of his symptoms and moods and treatments. Collaborating with his school to ensure he is getting the proper support and accommodations necessary for his disabilities.

And through all this…managing his illnesses, advocating for his needs and trying to keep my own head above water, you run head on into stigma. BAM. Like a swift and unexpected punch in the gut – it can take your breath away. Knock you over. And make you feel all alone, make you feel like none of these illnesses really exist and that it’s just you. All along, it’s just been all in your mind. That maybe, you’re just a parent in denial of a kid who is undisciplined, poorly parented and in general, just a naughty, bad kid.

Sometimes, that stigma truly makes you believe that. Whether intended or not. Perhaps, if you aren’t personally affected by mental illness, you haven’t noticed the stigma and messages that are underlying and at times intentional in our society, regarding mental illness. But consider the following:

Name some slang words to describe mental illness. What words did you think of? Perhaps you thought of words like crazy, nuts, wacko, demented, deranged, insane, psycho?

Now, name some slang words to describe cancer or heart disease. Could you think of any? Likely not.

Name some characteristics of someone living with mental illness. What words would you use to describe them? Usually, society chooses words like angry, violent, dangerous, lazy, incompetent, weak, selfish, afraid.

Now name characteristics of someone living with cancer or heart disease. What words did you think of? Courageous? Brave? Determined, inspirational, strong?

We rarely hear these kind words associated with people living with mental illness, yet we should. And many times, people blame the person with mental illness for causing it. Assumptions are made and many even tell the person suffering that they should and can ‘just get over it’. Yet, someone living with cancer or heart disease isn’t usually blamed, for creating or causing their own illness. Sure, in some instances – someone may blame a smoker for causing their cancer. But overwhelmingly in most instances, we as a society do not blame the person with heart disease or cancer for causing their own illness. Yet, we time and time again, we have trouble looking at mental illness as another disease that affects the body. For some reason, because it affects the brain and isn’t visible or detected in a blood test, it becomes devalued, untrusted, and doubted.

It is for these reasons and many more, why I support NAMI, the National Alliance on Mental Illness. They work tirelessly to help support, education and lobby on behalf of those living with mental illness and their families. And so tomorrow we walk for NAMI at their annual fundraising walk. Tomorrow…we stand together to stomp out stigma. Tomorrow, we walk together to show support for those living with an illness that is often misunderstood and unsupported. Tomorrow, we walk for Noah. A bright, sparkly eyed, smiley faced boy with a giant heart and kind soul. Tomorrow we walk for Noah, a courageous, motivated, strong and determined young boy who continues to fight these illnesses every day. Gloves on, looking it straight in the eye. This kid. I tell you, he has Courage with a capital ‘C’.

So together, we will support him. We will give him strength when he’s tired, smiles when he’s sad, and love all the damn time. We not be able to tell him that it will all be okay, all the time. Be we will be able to tell him that he’s not alone. He’s never alone. And when he’s weary, we will stand behind him and hold him up. When he falls, we will be there to pick him up.

And we will not let this disease win. We will not let the stigma shadow his light.

Tomorrow. We will walk for Noah. And we will do it together.