By Dee Austin
about the author:
My name is Melissa Vanderberg. My dear friend Dee Austin and I became prayer buddies at church right around the time my son Jericho was 2 months old. She has been a great sounding board and support for me. We are on this journey together.
She is one of my biggest supporters. I appreciate that she is honest and not afraid to ask the hard questions. She doesn’t let this disease ever make our family feel left out. She always ensures my kids are safe and we all feel welcome.
We’ve been friends for a little over two years. We have cried together, laughed together, and grown together.
Friends and Duchenne
I struggled when Melissa asked me to write about my perspective as a friend of a boy with Duchenne’s MD – because ultimately, I don’t think of it that way.
I love them and just do life with them. I had to dig down and think back because this is our normal now and they are quite literally a part of our day-to-day life.
If anything, where I sit now, being a part of Jericho’s life has been an absolute delight. I have had my own faith strengthened, my attitude adjusted, and my priorities aligned all because of the attitudes and faith of this precious family.
Looking back now, I clearly remember the conversations leading up to the moment I learned of Jericho’s diagnosis.
Honestly, I had a naive attitude. We already had one friend who had a child diagnosed with a rare disease. If this disease was so rare, there’s no way we would have a second close friend with a life-changing diagnosis, right?
And then I got the call.
I was distantly familiar with what MD was, but I had certainly never heard of Duchenne’s. Now, I – an empath by nature – didn’t know what to do. I didn’t understand what this meant. I didn’t even realize there were different types and I definitely didn’t know any details about MD specifically.
Overcoming My Own Fears
Thinking back, I did have moments of doubt and fear. Fear that I wouldn’t do the right things, say the right things, or say too much, or not enough.
How can I support my friend? How will I know the words? How will I know what to do? What words are ok? Special needs? ALL the questions…
In hindsight, those fears were all about me.
Just like every other journey in life, we aren’t prepared and that is how we learn and grow. My friend was in a place of need and shock. All of the sudden, it didn’t matter what the next step was.
I asked questions, even the hard ones (because I knew our friendship is strong enough for that), cried, laughed, joked, and above all, grew to learn so much about a disease I didn’t even know existed. I find myself checking into things and sometimes correcting others’ assumptions or misinformation – because if we are in this circle together, the more we know then the more we can all be a support system for them.
Unknowns? There are likely to be plenty down the road, but I love Melissa and her family, and while this does change some things (logistically, maybe), it does not change how we do life with them.
The Biggest Blessing
What started as me wondering how I could/should/would support them, has turned into me falling deeper in love with this precious child, Jericho, who has endless amounts of joy, contagious laughter, and a zest for life that is unstoppable.
It has also turned into me having a HUGE admiration for my friend and the family as they navigate the unknown path before them, walking gently through hard days with the older siblings, and just jumping in when I see help is needed.
It has created in me a new appreciation for my sweet friend and honestly deepened our friendship and my faith. I know the negative could be her focus, but she has so much hope and joy – and not the false kind, genuine joy of being able to choose quality over quantity – because she doesn’t know what the future holds. Certainly in no way do I naively think she doesn’t have hard days – I sit with her in those, too.
Being friends with a mom of a boy with Duchenne’s MD is the biggest blessing I could have received in life.
I Wish That There Was a Handbook
I wish that there was a handbook to make this simple – for example, a “what to say” manual, a “what to do when…” manual – but the reality is that we don’t have a handbook. We just live life with them – day to day, day by day, and support them in whatever way they need. These are a few of the things that I’ve learned.
I would say to anyone who has fears, walk in with an open mind, because when you’re trying to be supportive of them, you’re going to find that quite often they actually teach you FAR more than you feel you’ve supported them.
Above all, be ok with laughing, crying, and talking through WHATEVER they need.
Sometimes, though, you won’t even need words. Sometimes, you just need to listen and that is enough.
And when you have time to sit and really watch life play out, you’ll find that they were chosen perfectly for this moment in life. God hand-picked them. You’ll wonder where they get the strength from. I daresay, He knew and that’s why you’re on the journey with them.
– Dee Austin
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