Happy February, everyone!
I’m certainly feeling the love this month. Lucky me, I got to travel to Nashville with my mom and sisters for my 40th birthday.
The music, the murals, the food... Everything was super duper sweet.
We’ve also been busy preparing three sets of valentines for each of our girls’ classes. This year’s line-up was a little bit Frozen, a little bit OMG, and a little bit Star Wars.
It took us DAYS to get them all done, but we’re finally finished! My oldest, Miss E, who has Wolf-Hirschhorn Syndrome, is not yet able to write with a pen or pencil. So she signs hers in a different way.
We line up the valentines…
Dip into the ink pad…
Then press down…
Voila!
The personalized stamper was a gift from my exceedingly thoughtful sister in law. (Thank you, Leslie!) Miss E uses it to sign thank you notes and birthday cards. It gets a lot of use, more than I ever could have imagined… but Leslie did!
February also is Rare Disease Month. Life with a rare disease has its ups and downs, as many of you know first hand. Awareness lies in the details. We’re an active part of the Wolf-Hirschhorn community through the website www.wolfhirschhorn.org, where parents and caregivers share the latest about what their child is up to. It’s been an enormous blessing to our family, to read and see what other kids with WHS are doing and when - to get an idea of where our rare experience might be headed, and also to support others on this similar path.
Miss E recently turned 8 years old, so I wrote a round-up about what life looks like for her at this moment in time. Taking a bird’s eye view really helped me see Miss E’s gains, as well as larger patterns and breakthroughs. Here’s a link to the post, which covers everything from food and medications, to mobility and behaviors. (With joys too, of course!)
This Rare Disease Month, you may also enjoy meeting the Johnson family, I know I certainly did. They have three adult children with WHS. This video posted on the WHS website is full of *wow* moments. I am so encouraged by this family!! Their ambitions, outlook and hope are absolutely incredible…
Wishing you all a very happy Valentine’s Day! Love powers life, right? We certainly have received our portion, and more, and hope you feel as loved as you are today!