Hello listeners. Cara Lewis is our guest with week. Cara has a son with a rare genetic condition, most common to boys, ATR-X syndrome. She speaks about the rocky road they’ve had with her sons many diagnoses and symptoms, steps she’s coined in the special needs mom journey, and the importance of being connected with others.
Here are the steps the Cara has mapped out for special needs moms:
1) Realizing you are a special needs parent. It will be overwhelming and confusing to figure out what works for your family.
2) Accepting you are a special needs parent ad move forward with your child’s needs.
3) You can be in a place to help other moms that are walking in similar paths and build a support system.
Cara and I also talk about the dreaded question “How is _____ doing?” Sometimes its too much to answer. Sometimes people just wont understand even if we share the whole truth. Sometimes we don’t want the reaction people will have, good or bad. We did decide it is OUR responsibility to educate and help people understand so they can be more compassionate in their own lives. It’s a big responsibility to shoulder, but we can help shape the world for our children’s future.
I hope you enjoyed this conversation with Cara. Feel free to reach out to her or myself anytime!
Who is Cara? I am 27, married and have only Asher. I was told at a young age that I may need fertility to become pregnant. Asher was a complete surprise and we were so excited for the life ahead of us. What he would grow up to be like, what his voice would sound like, what food he would throw a tantrum over eating etc. at 18 months old, he was finally diagnosed with a rare syndrome called ATR-X. At the same time he was diagnosed, our lives were changing. He began being admitted in the hospital often with complications that come from the syndrome. Our whole life was flipped upside down. I went from having full-time career to being a 24/7 caregiver without any warning. Asher has a feeding tube. He is non-verbal and he goes to every therapy you can think of. I quickly went from “mom” to nurse, taxi, therapist, advocate etc. While it is a privilege that I sincerely love, it is hard. And that’s the only way to explain it. I am exhausted and burnt out. I find motivation in a group I created for local special needs mothers and I find drive by seeing Asher overcome battles and do things we never thought he would. I have learned more about myself through this journey and wouldn’t know, be or have opportunities to do for others if I wasn’t a mama to a special needs child.
Connect with Cara:
Facebook: https://www.facebook.com/teamasherl
Blog: https://aspecialmamablog.wixsite.com/aspecialmamablog
Connect with Kara:
IG: https://www.instagram.com/Kararyska/
Website: https://www.kararyska.com/
Group Coaching Program: Schedule a Consult
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