What I want you to know about being married to someone with a physical disability

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here.  Today’s guest post is by written by an anonymous writer.

My husband was born with Spina Bifida. He endured many, many surgeries and doctor visits as a child, but still managed to have a normal childhood. With the support of braces on his feet, he was able to run and play like any other boy. He played football and basketball and scared the life out of his momma by jumping off stuff he shouldn't have been. His condition progressed later on in life and is now paralyzed below the knee. He now gets around with the help of crutches and amazes me every day.

I want you to look past his physical limitations and see him for the amazing man he is. He is loving, supportive, hilarious, extremely intelligent, independent, creative and successful. Although he is sometimes limited to what he can do, he doesn't let that stop him. He helps me around the house with as much as he can - washing dishes after I've cooked dinner, folding the clothes I've washed, or scrubbing toilets and bath tubs (Hello, dream husband!). He encourages me every day to pursue my dreams, and works hard to support our family so that I can do just that. He is an incredible example of a godly man and husband to other men around him.

I want you to toss aside the assumption that because he has a physical disability, he must have a mental disability as well. I can't tell you how many times people have looked over his head and asked me "Does he need a wheelchair?" or "Does he need help getting to his seat?". My response is always, "I don't know. Why don't you ask him?". He is fully capable of understanding you and answering your questions. He made straight A's and was in all honors classes in high school, and graduated from college with honors. He has a great job managing the marketing department for the company he works for and does very well at it.There is no need to talk down to him or around him. I believe that these people mean well, but their assuming that he is not able to answer their question comes across as ignorance.

I want you to know that it is not always easy to be married to someone with a disability (but let's be real - marriage in and of itself isn't always easy!). There are things most people wouldn't give much thought to, but we have to sit down and plan out all of the logistics- like catching a flight. Hauling our luggage and getting through security was interesting, but we've got our system down now. Our life looks a little bit different than most, but it is such a rich one. We work through the tough times together, and laugh through the good ones. I feel so blessed to be on this adventure with such a wonderful man. 

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On not “firepitting” our marriage (or our children)

We’ve got a new metaphor in our house to describe a bad habit that we often fall into. We’re calling it “firepitting.”

It’s one of those things that a lot of people do . . . that tendency to live your best life when others are around. A prime example of this is our backyard firepit. We pull it out almost every time we have guests over. We love sitting around it, listening to music, talking, or roasting marshmallows.


But here’s the thing: we NEVER pull that firepit out just for our kids. We never set up the firepit after the kids have gone to bed and enjoy some wine just as a couple. It’s a thing we do when other people are over.

Similarly, we had some friends visit a few weeks ago and we decided to rent a duffy in Newport Beach. This is one of those things we’ve never done as a family, even though it’s close and not that expensive and a really fun way to spend the day. It’s the firepit phenomenon.


Firepitting is when we get a babysitter for events with friends but fail to secure one for a date night. Firepitting is when we go to Balboa Pier every time the cousins are in town but never when it’s just us. Firepitting is when we see a new restaurant and talk about who we could go with instead of just making plans to go there ourselves. Firepitting is lighting candles and putting on mood music when we have dinner guests but never doing this when it’s just our family. Firepitting is finding fun adventures to do when someone comes to visit instead of just finding them for ourselves. Firepitting is the fact that we’ve made home-made icecream numerous times when we’ve had guests over but never when it’s just been our kids.

It’s cleaning house when company comes over instead of just keeping it that way so that we can enjoy it.

I think it’s a normal human tendency. We put more effort in with our friends than we do with our family. We want to be hospitable, but we also want to impress. And while it’s wonderful to feel like we can be comfortable with our own spouses and children, I find that sometimes this means that we put less effort in, too.

It’s just one of those things I’ve been aware of lately. Mark and I had a great talk about it the other night, and we both agreed: we want to stop the firepitting phenomenon. We’re trying to be more intentional with our date nights and also with special moments with our kids. What that looks like: I ordered a new firepit . . . and we’re going to use it as a family.

We went on a date night and watched the sun set, with wine and music and a blanket, and then tried a restaurant we’ve wanted to visit.

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We made cookies and had a dance party in the living room last night . . . for no special reason.
And while I’m letting myself off the hook that every moment has to be precious and special, and I’m not going to feel shame about the fact that I love hosting and entertaining, I am also trying to focus on our own couple and family experiences. Because I never want my kids to look back on their childhood and think that people outside of our family got the good stuff.

Is firepitting a struggle for you? How do you combat it?

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#TBT: The celebration of color

On Thursdays, I'm posting a favorite from the archives. This was from October, 2010.

Jafta's class is having a "Celebration of Color" over the next two weeks.  In my mind it is more of a "Celebration of Chaos", because he is supposed to wear an assigned color every day of the week for two weeks.  And seeing as how I am struggling to remember to pick him up from kindergarten every day, this feels like a bit of a challenge.

A couple of you suggested I just boycot the color thing, which would be a perfectly sane thing for a mother of four with intact boundaries to do.  However, a) I have no boundaries and an instense need to follow the rules and be liked by my son's teacher, and b) Jafta is anxious about doing everything right at school and, if I get this week wrong, he will probably be talking to his therapist about it when he is a young adult.  He's a little neurotic.  I HAVE NO IDEA WHERE HE GETS IT.

So, those of you who told me to ignore the color thing, thanks for nothing.  Except for potentially ruining my son's self esteem and my standing with his teacher.  But whatever.  Rachel (commenter #12) has saved me.  Not to be confused with the other Rachel (commenter #15), whose kid's teacher is requiring color-coordinated snacks, which is the point where I would probably decide to homeschool.

(Only kidding.  Just the thought of homeschooling these four made me throw up in my mouth a little.  But seriously, Rachel #15 - that is ridiculous.  I feel for you).

Anyways, back to Rachel #12 . . . THANK YOU for your idea.  I put the days of the week and the corresponding colors on Jafta's chalkbord wall, and pulled all of the clothes.  Well, all of them except for pink.  I folded the clothes and put them in reverse order into a canvas bin, so each day he can pull the shirt in the corresponding color from the top of the pile.  I'm really not sure who is more pleased with this system - me or Jafta.  We were both very excited to show Mark what we had come up with, who rolled his eyes and told me I should just be ignoring the stupid color system.


Anyways, we made the chalkboard chart on Friday.  He was so excited about marking off the boxes that he made me do a chart for the weekend on the other side of the closet.  He has also reminded me, every night at bedtime, that he is still in need of a pink shirt for next week's agenda.  In my mind, I thought that we could just let that one slide, because he doesn't own a pink shirt, and I don't need to be buying shirts just for a silly school thing.  And also: frankly it's a little difficult to find pink shirts for boys in the gender-obsessed world of retail children's clothes.  

I held firm to that conviction for the weekend, until I spotted a shirt with a bit of pink at Target tonight and decided that it wasn't such a big deal to buy one shirt just to complete the bin.  Then I brought it home and put it in it's rightful spot, and breathed a little sigh of relief.

Celebration of Color, you will not beat me.


P.S.  That stuff I said up there about resenting you, and "thanks for nothing"?  I'm just kidding.  We're still friends, right?  Please still like me and leave comments and stuff.  I'm very fragile.

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Wednesday's Child: Creshawna

Every Wednesday I feature a child recently highlighted by a local Wednesday's Child newscast to share the stories of children from around the country who are waiting for a family. My hope is that this can broaden exposure for the children highlighted, but also serve as a reminder that these children represent thousands of children currently in the foster-care system. Perhaps their stories will inspire you to consider opening your home to a child needing a family. For more information and to learn about other waiting children, visit AdoptUsKids.

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25 Conversation Starters for the Car

This post was sponsored by Ford.

Road trips . . . they can be boring and tedious, but they can also be a time for family bonding. While we certainly aren't opposed to breaking out the technology for long-haul trips, we try to avoid relying on digital entertainment for shorter trips. For example, a trip to grandma's house is about 45 minutes, and one we take pretty frequently. Instead of pulling out the ipads, we try to use that time as a chance to have some deeper conversations with the kids, while we've got a "captive audience."  We are a huge fan of games that ask questions, especially questions that encourage conversation.

In an effort to make our car rides more fun, I curated a list of fun questions that I hoped would spark some great conversations. There are some silly questions, some serious . . . some aspirations, some nostalgic. I printed it out and took it with us on our last trip to grandma’s, and we had a lot of fun with them.


1. What is the hardest thing you've ever done?

2. If you could have dinner with any person from history, who would you choose?

3. What makes someone kind? How could you be kinder this year?

4. If you could solve one problem in the world, what would it be?

5. If you had to live on a deserted island with only one book, one song, and one movie, what would you choose?

6. Would you rather be a rock star, the president, or the person who cures cancer?

7. Tell me something new you would like to learn to do.

8. What do you think mom does while you are at school? What do you think dad does?

9. If you could only eat one thing for the rest of your life what would you choose?

10. Talk about a friend who makes you feel good about yourself. What do they do that makes you feel good?

11. Tell me about your dream vacation. Where would you go? What would you do?

12. Say something you appreciate about each member of your family.

13. If you could trade lives with anyone else in the world, who would it be and why?

14. What are three qualities you look for in a friend?

15. Tell me about a movie that made you cry.

16. You win a million dollars. What do you do with it?

17. Would you rather have a mean teacher who you learn a lot from, or a nice teacher who doesn't teach you much?

18. Tell us about something embarrassing that happened.

19. Describe the perfect day. What do you do?

20. Describe what your house will look like when you are a grown-up. Where will it be? What does it look like?

21. What is the earliest thing you can remember?

22. If you could have any super power, what would it be?

23. Would you rather be the best player on a losing team or the worst player on a winning team?

24. What is your favorite room in the house and why?

25. Share something you like about yourself.

Any new questions you would suggest to get the conversations going?
This content was created in partnership with Ford to help make creativity a part of every drive.

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