Moms don’t get sick. They don’t take days off. It’s just the way it is. Once you have kids, you just grit your teeth and deal with it, whatever it is, cold, flu, migraine, cramps, broken leg, whatever. Moms don’t get sick.
But what happens when they do?
For any parent facing a serious or long term illness, the worst part about it, hands down, is how it affects your kids. Since we’re moms, we can deal with everything else (pain, treatment, surgery, setbacks, anything) with a brave face and (hopefully) a positive attitude. What we have a harder time dealing with is how to protect our kids from our illness. It’s a special kind of mom guilt. It’s guilt for being sick in the first place. It’s useless and nonsensical, but there it is. We feel terribly guilty about all of it, because moms don’t get sick.
My kids have been dealing with my illness on some level since they were born. In the last two years, as my condition progressed, they have had to deal with it more often. They have spent the better part of this year dealing with it on a daily basis. They are worried. They are angry. They throw tantrums more often, and they are extremely sensitive lately. Sometimes I look at them and think they’ve finally just gone bat-shit crazy. Sooooooo, my husband and I are working with them and our pediatrician to make sure that we are doing the right things to help them cope and reassure them that we will all get through this. And we will.
In the meantime, we have made some modifications to our lifestyle and our home. We moved a card table and chairs into my bedroom so the kids can hang out with me as they color, play, read, eat, whatever. Sometimes we move Friday movie night into my bed. We have found we can do lots of stuff in mom’s bed, read, play games, cards, play video games…lots. I spend all of the time, that I’m not working, with them. And I wouldn’t have it any other way. I look at this time as an opportunity to teach them life-long coping skills, empathy, compassion, and that even though life isn’t perfect, it can still be great.
As it turns out, moms get sick. But if we are very lucky, we can also get better. In the meantime, life doesn’t stop. It might change a lot. It might be harder than it once was. It might not be what anyone would have chosen. But it’s still life. As long as we’re here, we have to treasure it. As moms, we have to take every opportunity we get to help our children grow physically and emotionally.
We have a choice: We can let the mom-guilt consume us, and feel sorry for our children, or we can use our circumstances to make our children stronger.
Some of the strongest people I know happen to be the ones that have faced adversity and used their experiences to build an amazing life. Many of them have faced challenges more difficult than my own. These people are my heroes. They inspire me every day to be the best mom I can be, and to guide my children through this time with love, humor, and gratitude. We’re going to have good days, and we’re going to have bad days. We have to remember to be grateful for both.
17 comments
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August 22, 2010 at 12:14 pm
amy
Sara your strength and attitude never cease to amaze me. I am so lucky to have such a strong, amaszing woman in my life. You are an amazing example for your daughters. I hope they know how lucky they are. #meloveyoulongtime
August 22, 2010 at 12:34 pm
Sara
Amy,
You are such an important part of helping me, Augie and my girls keep a positive attitude and sense of humor through this. The Santiago family loves you. Long time. 🙂
Sara
August 22, 2010 at 1:43 pm
Sarah
You and Augie amaze me just a little bit more every day. Like Amy said, you are setting such a positive and strong example for your daughters and they are going to continue to grow up to be strong, independent women just like you. They are incredibly blessed to have such wonderful parents, as I am blessed to have such wonderful friends. I love you guys!
August 22, 2010 at 5:13 pm
Alison
You kids will be amazing. I find that “bad” parents, never ever fuss about being “bad” parents. it is the ones who love the most, who are connected and invested the most who worry about things. i think the best thing we can do is just be ourselves with our kids, it gives them permission to be themselves. And sometimes we all get sick, tired, mad, frustrated…all of us. including them. You wouldnt adore them less if they never got sick, now would you? 🙂
August 22, 2010 at 7:53 pm
Sara
Alison,
Thank you. It’s that exact sentiment that I have to try to keep in mind, all the time. Generally, I think kids are born with a lot of what it takes to grow, adapt, cope and be awesome, in the way that works for them. Our job is to not screw that up. A lot of the time, it means taking a “let’s get through this together” attitude. Can’t wait to see you in October. 🙂
August 22, 2010 at 5:21 pm
julz156
It takes a special person to be a mom. YOU were chosen for your children. They will be great people because of who YOU are! You’ve got my prayers and support lady!
August 22, 2010 at 8:01 pm
Sara
Thank you, mama. I’m so lucky to have such a support network. 🙂 xo
August 22, 2010 at 8:39 pm
Tim
Not only are you an amazing mother, you’re an amazing cool auntie to Clara. She told me. Thank you for letting us hang out today 🙂
-Tim, Jess & Clara
August 22, 2010 at 9:08 pm
Kay
You are seriously awesome.
August 23, 2010 at 10:24 am
Mark Fairbanks
you’re powerful because you’re real. thank you for that. 🙂
August 23, 2010 at 10:32 am
Sue Spaight
Hi, Sara.
You are such an inspiration, in so many ways. Our kids do as we do, so your girls are so definitely going to be powerful and awe-inspiring. My little person and I send hugs to all of you.
Sue and Griffin
August 23, 2010 at 2:35 pm
Teresalynn
You continue to be an amazing inspiration, Sara. Thanks so much for sharing. xo
August 24, 2010 at 9:27 am
Kris Spurley
Your story stopped me in my tracks. Just this year I learned that an old friend of mine has Chiari. I’ve learned so much from her. Your stories have the same echo of hope and relief and “this sucks” honesty. I’ve sent her a link to this post. Two Sconni girls with Chiari who live not so far apart. I hope you can connect.
August 24, 2010 at 5:04 pm
Sara
Thanks for taking the time to read and comment! I would really love to connect with another “sconnie gal with Chiari! xo
August 24, 2010 at 5:06 pm
Sara
Thank you all for such lovely comments. I’ll pretend that all of it’s true and that I didn’t slip you all twenty bucks to say it. Seriously, though, Your support makes it easier to keep my head up and keep going. And I’m grateful. And now I’m broke. Dammit. 🙂 xoxo
September 2, 2010 at 9:57 pm
Cindi (@deziner)
Moms do get sick. And they get sad and mad and guilt-ridden. It’s a silent cross and I thank you for turning a microphone to it. But life does adjust, and we reframe what being the “perfect” mom we strive for looks like. Movie nights aren’t bad. Asking for help provides opportunities to teach and learn. And there is absolutely nothing better than slowing down to rest together. Moms do get sick…. but they are still the best moms in the world.
You are an inspiration to us all. Thanks you Ms. Sara. From one to another. 🙂
September 5, 2010 at 7:39 pm
Wendy Sullivan
Moms get sick. Sometimes moms get really sick, and kids grow up too fast. Sometimes little girls who took mom for granted find themselves regressing, curled up on the couch, head in mom’s lap, like a baby. The next minute, that little girl might find herself spoon-feeding her mother strawberry ice cream. Or comforting her father, pulling his boots off when he drinks too much and falls into bed. Or crying quietly, lest she upset mom or dad.
Your struggle is tough, but be strong. I’m glad @sugarwilla sent me here. You’re in my prayers. And wherever she is, my mom is also watching out for you.
Wendy