Our Journey: A Lonely Road to Diagnosis

My son had his first asthma attack at 6 months. 4 months and 4 middle of the night ER trips, we finally got a diagnosis of likely viral induced asthma. The title of their "VIP baby" of our local ER was never something I ever imagined post birth. (Granted, our ER staff was lovely and through all the struggle breathing, our tiny baby was oddly a champ when it came to IVs, nebulizers, and taking medicine).

To be honest, I was a mess. I felt suffocated. Therapy helped, but I longed for someone else that just "got it". In my mom group, no one else had even taken their child to the ER, let alone 4 times. I felt so alone without having someone that understood the anxiety, the exhaustion, the pleading, and the fear of what I was going through. I contacted every asthma organization. And while I found endless support groups and education for adults, there were none for parents of asthma kiddos. I did find comfort in online groups, but I really craved something more personal. 

Plus, as I spoke with these education groups and spoke with clinicians on behalf of an asthma wearable company, there was SO SO much I learned that my care team never told me or even contradicted what I had been told by my pediatrician's office. 

Not only did I end up realizing my son's asthma was severe (oddly, this brought me some peace), but I learned that asthma could be diagnosed under 5 and that there were small changes in my home (like removing carpet and washing sheets and rugs every week) that could help my lowering my son's overall inflammation.

So this group is for you. To use the online forum, connect virtually with us each month, find your virtual or in-person parents group. We'll be here for you when you simply need to tell someone what you're gong through. My goal is to connect you with the other resources the exist, so if you want them, they're easily accessible.

We're stronger together  

When, finally the sleep deprivation takes over and the next thing you know, you hear a cough. It's 5am and part of you panics, what did I miss?! Or when you're holding your baby all night long counting breaths. We see you, and we'll get through this, together.