When my sons were diagnosed with Fragile X Syndrome in April of 2006, I felt like I'd been punched in the stomach. I was depressed and couldn't stop crying for months. On the bad days (which averaged to be around 2 days out of every 3) I was ferociously jealous of people with "normal" kids. Anybody who complained about how their kids talked back to them (at least they could talk!), or refused to pick up their toys (rejoice that they are capable of complicated playing and pretending!) or had friends calling or coming over all the time (be happy they have the social skills to make friends!), I smiled and nodded along while inside my head I seethed. In a nutshell, I felt enormously sorry for myself that everyone else but me had a perfect family.
Then I became aware of Claudia Burrows.
Claudia has three children and not one of them was spared the Fragile X gene. All three also have autism. Two of her children are grown and living outside her home; her youngest, Christopher, still lives at home with his mom. Claudia herself was diagnosed with ALS in August of 2005. Yes, this family was struck by lightening twice. Christopher requires a lot of extra care due to an immunity disorder (apparently having Fragile X Syndrome wasn't enough burden for him). He is home schooled and doing pretty well now, thanks to a devoted caregiver and his tireless mom.
Before her diagnosis Claudia worked as a First Responder for Emergency Services. When her body allowed it, she spent her life helping others. She has been an enthusiastic giver her entire adult life, despite raising three special needs children as a single mom. In her spare time she learned the ins and outs of disability laws and became an advocate for newly diagnosed families. Even with the limitations ALS now enforces on her life, she continues to life each day fully, loving her children and supporting and advocating for Fragile X families.
This is my bid to nominate Claudia Burrows for Extreme Makeover: Home Edition. She has spent her life giving, giving and giving and now that her body is weakened by ALS, her mobility is severely limited by her wheelchair, and there are only a few parts of her house she can get to. I would love to see her get a little something in return for the years and years of service she has provided to all families in need, both as an advocate and supporter of Fragile X awareness and as a First Responder.
Read Claudia's touching blog at http://claudias-family.blogspot.com/.
Word of the Week 18/11/2017 Awry #WotW
4 days ago