PWSA Blog

#HopeIsHere – Ethan and Mason

Thinking back to NICU, and being told “I don’t know what’s wrong with your baby. But something is, and it’s pretty serious.” I never ever thought we’d get to the point where we could could just live our lives casually. Casually cuddling on the couch. Casually packing up and heading out for a walk. Casually having movie night. Casually going to the park. I thought my entire life was going to be spent living with the heartache of a syndrome I had no control over. Worrying about we might be able to accomplish in life, and the stuff that was robbed from us. What life was going to look like in the future. But our reality is Prader-Willi syndrome is not our lives. Our boys are our lives. My life is spent feeling so so so incredibly blessed, and humbled that I was given these special little lives to raise. Prader-Willi syndrome helped shape our family. It has given us SO much more than it will ever take from us. Prader-Willi syndrome brought us 2 other boys with special needs (one of which also has Prader-Willi) , and taught us life is not about being able to keep up with others, and being textbook perfect, or worrying about what our future MIGHT hold. It’s sitting down and enjoying my boys in the present. That’s what gives me hope for the future. Knowing where we’re at, and where we have been is absolutely mind blowing, and I can’t wait to see what our future holds, and what else my boys can teach me.

 

 

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