Special Needs Parenting – My Life is  Journey, Not a Race

Note from Kat: I wrote the post that follows to begin my journaling for a group I belong to on Facebook. It’s the Inner Circle group for an amazing health, nutrition, and all around whole foods expert Carl Mason-Liebenberg.

I’ll be including links to his group after this post, even though it isn’t a “free” resource, because I believe so strongly in healthy living for those of us dealing with special needs parenting.

We need to be strong to handle the stress that life throws at us as special needs parents, and it’s hard to do that when our bodies are broken down and just don’t want to keep going anymore. I know many of you have additional health issues like me, with Fibromyalgia.

I think this approach to a healthier lifestyle for my family is the best decision I ever made and I’m hoping to spur discussion and honesty along the way.

Where I’m starting? Is from a sedentary lifestyle, severely overweight, pain-filled existence. I’ve already dropped 25 pounds and my pain levels are improved. Now we have other challenges … and those challenges are part of this journey we are on. It’s called life. *grin*

My Special Needs Parenting Life is a Journey … to Healthy Living Now

We are all on a journey to better health, and in this I am no different. Wife, mom, advocate, caregiver … somewhere along the way I lost a bit of myself. Too bad that didn’t include the weight I had gained along the way. *grin*

It’s taken me years to claim back parts of me – the creative, the writer, the individual. My health, however, took a nosedive years ago and I haven’t been able to find it yet.

The Challenges of this Life

In this life we have circumstances that change us, that mold us into the person we were meant to be, and for me the biggest thing was becoming the mother to three amazing little boys with some pretty complex special needs.

Over the years, as first Bobby, then Andy, and finally Logan, were all diagnosed with the same rare genetic disorder, then epilepsy, then autism, and then a myriad of additional diagnoses ranging from cerebral palsy to cystinosis. I clung stubbornly to the idea that if I could just be good enough – a good enough mother, a good enough organizer, a good enough person … If I could just be good enough everything would fall into place.

Instead, over the years the stress of becoming caregiver for not only my three guys but my husband as well weighed heavily on my mind and body. My mind is beginning to recover from these long years of constant stress, but my body broke down over the years. Fibromyalgia, Asthma, borderline blood pressure, arthritis, over 100 pounds.

Here’s the thing … the stress doesn’t magically go away. In fact, we seem to have a new crisis sometimes daily … but how I deal with that stress had changed drastically. As I’ve become healthier in mind, I can say a few months ago that I finally started thinking I could become healtheir in body as well, and maybe help my family do the same.

Challenges, I think, are just another way for us to complete our journey in life. Sometimes the path is all downhill – easy to walk and fast to travel – and sometimes the path is rocky and fractured – meaning we have to find ways around and through the obstacles in our path.

The challenges my family has faced are just part of that rocky path, and now I can truly say we’re working to find ways around those challenges.

Deep Breath — Becoming a Loser … for Real!

Me, last year, swollen from my last round of steroids for an asthma flare

Me, at the SuperBowl festivities in Indy a few months back

I’ve done weight watchers before, and I’ve done “healthy eating” before – and I’ve lost a bit of weight here and there. But I never approached weightloss as part of an overall transition to healtheir living. And I never knew how much nutritional information I was missing out on by being unaware of the whole foods lifestyle.

I feel more energized and pain-free than I have in close to ten years right now, after less than two months of being part of the Inner Circle, and I can finally say I’m ready jump over that hurdle to getting serious about my healthy journey. I’ve been able to stop all but one of my medications, including water pills for excessive swelling.

Getting Serious about Healthy Living

I thought I was serious before …. my kids and husband would say I have been serious – they completely lament the lack of processed foods in this house! But I need to do better, go further. And I have to push myself to up the activity level.

My fibromyalgia and associated pain levels have kept me sidelined for too long – and I’m finally able, now, to get up and physically start walking around those rocks in our path.When I first weighed in about two months ago and realized I had to do something … I was at my heaviest weight ever – 274lbs by the doctor’s scale, and 278 just a few days later by the same scale.I was hesitently proud a little over a week ago to know I had lost around 25lbs when I weighed in at 248. Then I had a Fibro flare and I slipped … I wasn’t as active and certainly wasn’t eating as much of the quality foods I needed to be eating. My weight climbed back up to 256 earlier this past week and I was in tears.

But those ups and downs are part of the journey too … I can accept that and move forward from that, knowing that the next flare I have I’ll do better.

Starting Over – Healthy Living From Right Now

So, I weighed in earlier Sunday at 250 pounds  for the start of this 90-day adventure and I’m more ready than I’ve been in a long time. My journey is a rocky one, but I’m ready to start flexing some of those muscles now to climb over and work around the obstacles in our life. This is my way of staying accountable to myself (and the amazing folks in this group, and by default my Kat’s Cafe family)

This ends my first and very public confession … I’m not as healthy as I need to be.

How about you?

Are you dealing with special needs parenting and struggling with the idea of healthy living as well? What are your biggest challenges?

Me, just a couple days ago, wearing the amazing 3-D glasses in the zoo’s Dora show – which the kids loved! And yes, that is a sweet tattoo I was talked into years ago right there front and center. It’s a cross, and reminds me daily that I have a God who carries me through the challenges in life ONLY after I have tried and failed to walk through them myself.

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Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More

I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.

@KatrinaMoody

Wife; Mom to 3 guys w/ARS, autism, epilepsy & awesomeness; Advocate. Writer, Graphic Designer, Wordpress addict, social media nut. Site: http://katsmedia.com &

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