Dec 19

You Matter

Posted on December 19, 2012 by Laura Matheos

If you’re reading this, chances are you are mourning the lives lost in Newtown, Connecticut. As the nation begins to emerge from shock and horror, as we pass into a phase of soul searching and debate over gun control and mental health care, dozens of teachers from Sandy Hook Elementary School will start the new year by walking into a school in the neighboring town of Monroe and do something unfathomably courageous. They will greet the hundreds of children who must return to school for the first time since the shooting. They will give reassuring hugs, they will keep a keen eye out for both physical and emotional well-being, they will dedicate every ounce of their being toward making the world right again for those in their care. They will fight the tears that threaten to gush forth, they will suppress their own sorrow and fears so that their children might eventually learn to feel safe again.

I cannot imagine the courage these teachers will have to muster. But I can imagine the love and commitment that drives them. It is the same love and commitment all caregivers have for those who need us.

There have been numerous calls to action to honor those whose lives have been forever altered by this nightmare, most notably Ann Curry’s call for everyone to perform Acts of Kindness for those around us as a way to pay tribute to those who’ve been lost to us. One act I’m going to do is to write thank you notes and deliver them to the Newtown Superintendent, asking her to deliver them to the school staff. Here’s what I want to say:

Thank you for your courage. Thank you for the love you give every day. Thank you for giving the gift of yourself no matter how hard it is sometimes. The people in your world are richer because you are here. You make a difference. You matter.

I read this to myself over and over, wanting it to be concise yet wanting it to speak volumes. Then something occurred to me. This is the same note I want to send to a few of my friends who struggle with depression. With the dark and cold months ahead, I worry that they’ll forget how important they are to their kids, to their grandkids, to me. This is the same note I want to give to my husband to make up for all the times I get too busy to make the time to show him how much I love him. This is the note I want to give myself because I’m trying to be a good friend to me. This is the note I want to give to my son and to my daughter. No matter how often I tell them, they can’t truly comprehend how rich they have made my life, how much they inspire and teach me, how deeply I love them. I want to indelibly write this into their brains so they never, ever doubt just how much they matter. This is the note I want to send to every child who feels disconnected, who feels that no matter how hard he or she tries, (s)he is just too different to ever fit in, to ever be understood.

You matter.

I care.

And so I send you a note today, as a caregiver of children who really, really need you:

Dec 12

Holy MTHFR!

Posted on December 12, 2012 by Laura Matheos

If I say MTHFR, then Methylenetetrahydrofolate Reductase are the two words that pop into your brain, right? No? Well, hopefully after reading this, you’ll see more than that swear word that caught your attention.

If I next mention bipolar struggles, rapid mood swings, depression, anxiety, heart disease, strokes, macular degeneration, miscarriages – and any of these issues hit home for you, then read on, because you might just want to know about MethyleneTetraHydroFolate Reductase – better known by its abbreviation – MTHFR.

MTHFR is a gene and like all genes, it acts as a light switch – turning on or turning off various body processes. In this case, MTHFR takes folate (vitamin B9) and methylates (converts) it into methylfolate (5-methylTHF). Hardly seems like a big deal, does it? Yet, if you belong to an autism, Pandas, Lyme or chronic fatigue group, you’ve probably noticed a big buzz around this thing called methylation. While the past decade has seen MTHFR studied in terms of cardiovascular disease and cancer, it turns out it might also be a very big deal for those raising kids with developmental, neurological or behavioral symptoms and for those fighting chronic infections.

Methylwhat?

Continue reading →

Aug 10

To Med or Not To Med?

Posted on August 10, 2012 by Laura Matheos

Recently, I witnesed a debate about medicating kids with invisible disabilities. Predictably, sadly, it got a little heated on both sides. Now, I have strong opinions on this as it relates to my own kids but let me state upfront that I do not feel that my opinions should be held by anyone but me. I’ve lived through moments where it took every ounce of self control, every molecule of patience, just to get to the next moment in time without losing my mind. I’ve had days where I’ve wished with all my heart for a pill that would make it all go away. I’ve also had days where I’m grateful that no such pill existed because walking a different path brought unexpected gifts.

Sometimes the decision to use a medication – for any illness – is a slam dunk. Other times, it comes only after an agonizing internal conflict. Sometimes it doesn’t come at all and you choose to slug through med-free. I think the reason many parents decide to give a child a pill – by prescription or an over the counter supplement – is because that particular medication just might give the body and brain something that’s missing. It’s a decision driven by the desire to give your child – and your entire family – a better quality of life; to provide freedom from hell on earth. It is not “taking the easy way out,” using “mother’s little helper” to shirk the hard work of parenting. It is choosing, each in our own way, to be a responsible, nurturing parent who’s trying everything possible to do the right thing. But there is no “right” thing in a way that’s “right” for everyone. Or even “right” forever. There is only “right” for right now.

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Jul 24

A Glimpse of Normal

Posted on July 24, 2012 by Laura Matheos

When you raise a child with “challenges,” you can spend a lot of time measuring your life against a “normal” ruler – some imagined gauge to see just how abnormal your life is compared to other families. Some days, you look around and decide you’re not doing so bad. Other days, you feel like your family life is so off-the-charts insane that you may never find your way back.

Having kids with PANS (pediatric acute-onset neuropsychiatric syndrome) means our normal-o-meter goes up and down based on health. When illness blows through the house, Normal becomes a place on the other side of the globe.

It’s a rare event to have both kids healthy at the same time. But bucking tradition, both started this summer in a good place. After years of medical battles, I felt like I was finally getting a date with Normal. This is the story of how the date went.

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Jun 15

Gripped by Fear

Posted on June 15, 2012 by Laura Matheos

I had the strangest experience the other day. I became totally overwhelmed with anxiety. Not your run of the mill worries. Not an “Oh man, this sucks, I wish I didn’t have to face this” kind of worry. I’m talking about an “OMG, the world is closing in around me, I can’t breathe or scream for help and no one seems to be noticing” kind of worry.

It didn’t matter that what I was worried about was being hugely exaggerated in my head. That if my fears ever did come true, it would be eons in the future. It didn’t matter that I knew many things would change in the coming years that could make all this wasted energy irrelevant. It didn’t help when I reminded myself that there were many people and backup plans to support me if my fears did happen to come true. I was gripped by unrelenting, dark, suffocating, paralyzing fear. I felt like I was being buried alive, watching the light disappear as dirt fell around me, squeezing away the air pockets that would keep me alive. I was utterly alone, isolated, terrified. It took enormous energy to get through each moment, feeling like the activities swirling around me – kids playing, dog barking, neighbors mowing the lawn – were actions in a movie. I was only watching. I wasn’t part of the life going on around me. I was instead held hostage inside my own head. A tightness gripped my chest, so tight that when I tried to take a deep breath, it only confirmed that I was suffocating, because no matter how much air I tried to suck in, no matter which relaxation trick I tried, it only left me feeling more deprived of air, more desperate, now even further from the calm I so urgently craved.

When my husband came home that night, I told him what I was feeling. He showed concern but there wasn’t much he could do. It was all in my head and I was the only one who could fix this. That experience – of trying to reach out for help, for connection – only made me feel worse, because it reinforced just how alone I was. I was the only one who could change this and since I felt powerless to conquer this overwhelming fear, I was truly, totally, completely screwed. Impotent. Doomed. Continue reading →

May 24

Doing What Doesn’t Come Naturally

Posted on May 24, 2012 by Laura Matheos

Perhaps one of the greatest gifts you can give someone is to help him feel understood. As a parent, it’s the biggest goal I have when it comes to my interactions with our school – to help my kids be understood by their teachers. Of course they’ll have issues, conflicts, misunderstandings, maybe some tears. They have those things at home, despite living with their perfectly understanding and unflappable parents (ha!). So there’s no way to think they won’t encounter bumps everywhere else too. But if those issues can be framed in the context of their unique challenges, if the “why” of their behaviors are at least considered when consequences are meted out or proactive plans are hatched, I’m a happy camper.

Unfortunately, like so many parents, I find goals and realities don’t always walk hand in hand. Awhile back, I wrote about the disappointment of some teacher conferences I’ve had (http://www.easytolovebut.com/?cat=361) and how I wished all teachers had to attend a course that helped them understand what it felt like to have ADHD, OCD, anxiety, sensory issues, Tourette’s, bi-polar or any of a dozen other challenges. The feedback from parents was overwhelmingly positive. But privately, I received emails from friends who are professionals in school systems. Their enthusiasm was far more muted. Even though they themselves struggle with anxiety or their own kids have 504s or they work with students with special needs, they let me know that while sometimes teachers don’t “get it,” sometimes parents don’t “get it” either. Continue reading →

Feb 09

The Color of Worry

Posted on February 9, 2012 by Laura Matheos

My kids and I all suffer from anxiety. For the kids, it’s infection-triggered; a disorder broadly called PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). The infectious trigger can be strep, Lyme, mycoplasma, or any number of bacteria or viruses. PANS, like PANDAS, causes sudden episodes of intense anxiety, OCD, AD/HD, anger, emotional meltdowns, loss of fine motor skills like handwriting, brain fog and other “co-morbid” symptoms. It’s a smorgasbord of neuropsych labels.

My own anxiety likely comes from genes that affect the way my body “methylates” or fails to produce enough serotonin, one of the neurotransmitters that influence moods. It also comes from raising two kids with PANS.

Continue reading →