Giving and Getting it Right Back

Supporting parents who have been through similar experiences as I have been through has been part of my life for the last 15 years. From our youngest's SPD to his diagnosis with Addison's Disease it has been difficult to process my feelings and to know how to help him navigate life. In both of these instances, they were not issues that were not easily understood, that could be googled (SPD in 2008 was an uncommon term still) or that I could find others in my life who just "got it".

So, I started support groups, I put out ads on social media and connected with other parents who "got it". And these groups were to help others, but they were and still are to this day to help me too. As parent representative for Adrenal Insufficiency United, I lead groups over Zoom to help parents with children at any age and stage of any diagnosis with adrenal insufficiency. Most of my time, honestly is spent helping parents new to the diagnosis, those in crisis or those who changing circumstances (schools, new sports, etc...).

But last night was different - last night it was just two other moms - their sons are just a bit younger than mine, same diagnosis, similar issues some time after diagnosis, and similar feelings as moms watching their son's struggle as teens, looking back at signs that they had seen but didn't know what they meant and wondering what the future holds for their boys.

Their boys are struggling in ways that my son was a few years ago and so many times I was just told he was lazy, unmotivated and that it had nothing to do with his Addison's. You see, with Addison's Disease we are often told that if you take your medication as directed that you will live a full and "normal" life. For us as moms, we get this message from others - adults with Addison's and medical professionals and then we look at our sons who struggle to get out of bed before noon, to keep up with daily life activities and are not enjoying life. It is hard to reconcile between what we hear and the truth we are living, but when we all are living such similar things it seems there has to be truth in it. Maybe the teen/young adult years are harder as hormones are fluctuating, maybe these adults we hear from were diagnosed at different ages, hopefully our boys will one day be living these lives too. Until they do, I promise that, as moms we will continue looking for how to get them on that path.

Find your tribe, others that are on the same path, that are fighting the same fight....you will never regret it....