Smarty Mom: Patrice Williams

By Rachel H

Today’s Smarty Mom is one whose life took a turn she never would have expected when she gave birth to her son, Jonah. Patrice was a high school Spanish Teacher who now dedicates all of her time to raising her son, who is now almost 11 months old.

Patrice grew up in Lewisville, NC and moved to Kernersville after getting married. She and her husband, Matt, endured much grief when they gave birth to a stillborn baby, Gabriel, on April 22, 2008. Less than a year later, Jonah was born. He was born with a rare genetic skin disorder called Epidermolysis Bullosa. Basically, he's missing the proteins that anchor his skin to itself. Any rubbing or friction to his skin (wiping him with a wash cloth, picking him up under his arms, seams from clothing, etc.) cause him to form large blisters (they can be as big as lemons) on his skin. Eventually the skin sloughs off leaving wounds similar to second degree burns. Jonah has to stay bandaged from his neck down.

Patrice and Matt now suspect that their first child, Gabriel, had the same disorder. Patrice describes every day as a “beautiful challenge, but we are so thankful for Jonah and he is absolutely PERFECT to us.”

I would love to share more with you about the Williams family …

You have started a blog called The Williams Family Blog, which has attracted loyal readers from all over who are following Jonah’s story. What inspired you to start this blog?
I started the blog right before Gabe was born, basically just to journal his life and share photos with family and friends. Little did I know that two posts later, I would be blogging about his death. I maybe had ten to twenty readers from March of 08 to February of 09, but the blog blew up within 24 hours of Jonah’s birth. Between word of mouth, prayer requests posted by some very widely-read bloggers, and EB folks having set their Google alerts, all of a sudden I was getting 60 to 100 comments per post. Crazy!

You are very upbeat in so many of your blog postings and seem to take every challenge as a blessing. How are you able to stay so optimistic?
It’s all an illusion. :) No, really, I’m not always upbeat, although I guess, with Jonah, I just try to view every day as a gift and attempt to really appreciate my time with him, no matter how tough some days may be. Honestly though, I am not optimistic all the time, and I do attempt to blog the low moments too. God has truly blessed us with more up than down, so HE is the reason I can have so many “up” posts.

What is your biggest challenge in your day-to-day life?
Our biggest challenge with Jonah has been constant eating issues. We are in a good phase right now, but we have been on the verge of a g-tube several times. He still refuses to eat solids, so it is a constant battle. He also struggles with severe acid reflux and projectile four to six ounce spit-ups. I can handle the blistering and bandage changes, but it’s the “basic” stuff that he struggles with that really gets to me. When I get low, all I can think is, “He can’t even eat. He has to deal with all this other crap, and he can’t even eat.” But then I snap out of it, and he snaps out of it, and we get pulled out of the pit yet again.

Tell us about the auction coming up that will be held in Jonah's honor.
This will be held in honor of Jonah's first birthday. It will be held the five days leading up to his birthday (Feb 27th) at jonahsebauction.blogspot.com. All proceeds will go to DebRA (Dystrophic Epidermolysis Bullosa Research Association of America) for research (we need a cure!) and family advocacy. Each item will be its own post and people will be able to bid in the comments of each item. LOTS of good stuff and good fun for a good cause.

Are you able to take Jonah out and about much?
More and more every day (Thank God!). As he gets older, he’s “gushing” less, eating more at a time (so we have bigger windows of time), and is much more content. I’m so thankful as there are many days it feels the walls are closing in.

What is your favorite thing about Jonah?
This is a really hard question to answer. He is such an amazing kid. He is so strong and resilient, and if you couldn’t see the blisters and bandages, you would never know there is anything wrong. He’s so happy and beautiful. Okay, I’ll stop gushing now.

Now on to the easy questions …

What is your favorite thing to do as a family?
We are pretty low-key, but I’d say our favorite family outing is going to church at Pinedale Christian. Family outings are few and far between (besides running errands), and we’ve had to miss a lot of church this past year, but we LOVE the Sundays we get to worship with our church family.

What is your favorite “me-time” activity?
It used to be reading, but now I’d have to say sleeping. I’m just so tired, and nothing is better to me than Matt looking after Jonah on a weekend afternoon so I can take a two hour nap. I also like to blog and am trying to teach myself (unsuccessfully) to take and edit photos.

Favorite place to eat dinner as a family?
We really like Moe’s. It’s quick, fresh, and Jonah friendly. If we get brave enough to go to a sit-down kind of a place, we enjoy El Maguey in Walkertown and my friend Gina’s new café, Miller’s on Main for lunch on the weekends. And I could never say enough good things about Chick-fil-A. (I’m sorry I’m not really good at picking just ONE of anything.)

Favorite date night spot?
We don’t really get to go on dates much, but Matt loves to go to the movies (woohoo Kernersville $3 theater) and we also go to as many Wake basketball games as we can (which has not been very many this year). And I love to eat, anywhere really. We recently went to Sweet Potatoes downtown, and I thought it was amazing.

Favorite book you have read?
I really loved Blue Like Jazz by Donald Miller. I typically do not like non-fiction, but it was laugh out loud funny and just gave a whole new perspective on “religion” and what a relationship with God really means. It was an easy read and really thought provoking at the same time.

Favorite park in the Triad?
I really like Tanglewood, but since we live in Kernersville, Fourth of July Park is probably my favorite on this side of town.

Best thing about raising a family in the Triad?
There is so much to do here. It’s a great combination of small town and big city. I like that we have access to the mall and Target and downtown, but if someday we want to have a house with lots of land, we can. It’s a big city that still has trees. Hard to find.

I could not live without my...
Jonah.

Patrice, thank you so much for being so open with us today and sharing your amazing story about your precious little boy. We wish you and your family all the best and look forward to following your journey on your blog.

If you know a Smarty Mom or Dad , you can nominate her/him by sending us an email at triadsmartypants@gmail.com.

Posted by Triad Smarty Pants at 5:00 AM