Submitted by Samantha Block (9/27/2013)
I think most parents would agree that raising a child is the hardest thing they’ve ever done. The scariest thing they’ve ever done. When a person becomes a parent, whether through biology or adoption, they are agreeing to put the needs of a helpless little human before their own.

Most parents understand that. They understand it to mean middle of the night feedings, wiping poop off butts (and legs, and arms, and mom’s legs and arms!), giving up sleep, living in yoga pants and pony tails.

Few parents expect that to mean handing your newborn over to a cardiothoracic surgeon who is going to crack her chest open, stop her heart, and repair arteries the size of wires.

Few parents expect that to mean staying awake for 48 hours at a time as you wait out a surgery, grabbing a catnap in a chair in the ICU, a place that does not differentiate night and day.

Few parents expect that to mean spending entire winters holed up in your house hiding from the rest of the world and the germs they carry.

The fear. The loneliness. The unknown. The lost friendships. The pile of medical bills.

It’s not unusual for parents to lose themselves. They forget what a “normal” life is. They find happiness in their child’s successes, no matter how small, but they soon realize they have trouble finding happiness in anything else.

I’ve been there. But in the past 6.5 years that I’ve been navigating our version of the 22q world, I’ve learned that meeting MY needs is just as important as meeting my son’s needs. So here are 22 ways you can find yourself in this 22q world:

1. Go for a walk. Fresh air, birds chirping, bright sunlight. Just you, alone with your thoughts. Or perhaps alone with some music. Or maybe a book on tape. Just put one foot in front of the other. Walking doesn’t require any special gear except a pair of shoes. I assume you have shoes.

2. Have coffee with a friend. But here’s a rule: Don’t talk about your kids! Calories don’t count for this date.

3. Read a book. Hide in the bathroom to do it if you have to. But here’s another rule: It can’t be a 22q book or a parenting book! Remember when you used to read for pleasure? Do it. Tonight.

4. Take a bubble bath. Lock the door, turn on some music. Pretend you don’t hear the sounds of toy bins being dumped or cheerios being scattered in the kitchen. Use that electronic babysitter (also called the television) and float away in peace.

5. Hug your spouse. Remember that hot guy or gal you fell in love with and married? Hug him/her. Right now. Seriously, stand up and go hug him. If he asks what that was for, say “just because I love you.”

6. Get your hair done. Hair dressers are like therapists, you have an hour to talk her ear off and in the end you have a new do! Go ahead, be crazy! Purple streaks are fun!

7. Get your nails done. Yes, I know, it’s hard to change a g-tube with a manicure, and those trach ties are hard to tie with acrylic nails. But you’ll figure it out.

8. Cry. I’ve been so positive with these suggestions, and now I say cry? Yep, cry. I don’t like to cry in front of people, so I would cry in the shower. Or at 2am. In private.

9. Laugh. I often say “I figure I can either cry or laugh, and I choose laugh.” It’s so absurd! How can an Otolaryngologist and Pulmonologist disagree with the Cardiologist, why do they send us in circles, and how many vials of blood can you actually draw from a 12lb 1 year old? Laughter is the best medicine, right? Sometimes, yes. Type “funny jokes” into Google, but make sure you pee first, you don’t need more laundry!

10. Get a pet. Right, another life you’ll be responsible for? More poop to clean up? Let me tell you, I have 5 different animals in my menagerie, and I get joy from all of them. My Betta fish lets me know if I’m late feeding her, and if I walk by her tank at 3am she greets me with a friendly flick of her tail. I challenge anyone to stay angry with my kitten purring on your lap. And my dog is still trying to catch that darn squirrel in our backyard, I wouldn’t have even noticed the squirrel was there!

11. Have a pajama day. Lay in bed and watch movies, have pizza delivered, and turn your phone off. Bonus points if you have fuzzy slippers!

12. Sing. Sing in the shower, sing while doing dishes, sing in the car on your way to your fifteenth appointment that week, since while you’re mopping the kitchen, sing while you’re wiping yet more poop off the changing table (seriously, where does all this poop come from?)

13. Dance. Like no one is watching. You might want to close your blinds for this one. I also recommend that you don’t dance while mopping (don’t ask how I know this), but go ahead and dance while sweeping! You know that dog I mentioned, yeah she sheds, but sweeping up her fur gives me an excuse to dance through my living room. When you wake up with sore muscles the next day, utilize suggestion number 1 to work out the soreness! Don’t forget suggestion number 4 either.

14. Seek out a faith community. Don’t be afraid to “church shop” either. Find one that you are comfortable with, one that your kids are safe at, I personally wanted one with a coffee bar! Seek out support, both physical and spiritual, in whatever way is meaningful to you. This one will help you with number 2.

15. Dust off your hobbies. Did you used to knit? Play the piano? Racquetball? Football? The other football? I used to be a runner, so when my 22q son was a year old, I laced up a pair of running shoes and hit the asphalt. I ran my first race, the 2010 Air Force marathon, when he was 18 months old. Crazy? Maybe. What are you crazy about? Remember those calories I said didn’t count in number 2? This is why they don’t count, number 15 cancels them out.

16. Volunteer. Find something you believe in and advocate for it. Do you love animals? Walk dogs at the Humane Society. Do you love nature? Go pick up litter from a wooded trail. While you might be tempted to volunteer for something in the 22q community in particular, remember our goal is to find yourself OUTSIDE of the 22q world, so branch out a little! Remember that friend I mentioned in number 2? Maybe this is where you’ll meet him/her.

17. Sleep. Take a nap. Trust me, your husband can handle the kids for an hour. Use ear plugs if necessary. Take up the whole bed, use all the pillows, steal the blankets. Kindly wipe the drool off your husband’s pillow when you wake up. Or just flip it over, I won’t tell. Bring your pet from number 10 to nap with you, unless it’s a fish. Or a hedgehog.

18. Skip a therapy appointment. Fib about it if you have to. Your child will probably be in speech therapy for a decade or more, missing one session won’t change much. Go get ice cream instead. Give her a double scoop even. Every time your child smiles at you, subtract 10 calories from the tally.

19. Go to Target. Buy something for yourself. Repeat, for YOURSELF. See that cute onesie over there? DON’T BUY IT! See that lacy bra? Try it on. Text a picture of it to your husband. Buy it. You’re welcome.

20. Wear bright red lipstick. Why? Why not! Smother your child in kisses. Kiss a tissue and hide it in your husband’s briefcase, lunch bag, or back pocket. Red isn’t your color? Then go with purple. Walk around the grocery store proudly wearing your purple lipstick and smile at everyone. You’ll look great with number 6 and 7.

21. Meditate. Teach yourself to take deep calming breaths. Resist the urge to lash out, stop and breathe instead. Don’t be afraid to ask your child, husband, or even a doctor to leave the room for a minute while you collect your thoughts. Come up with a hand signal or code word that lets your family know that mommy needs some alone time. 2 minutes can go a long way.

22. Finally, cut yourself a break. No matter what you do or don’t do, no matter how many times you second guess your every move, know that you are doing the best you can facing unimaginable circumstances. Literally say that outloud if you have to. “I am a good mother/father, I know I am making mistakes, but I am doing the best I can. This is hard, but I can do this.”

Tonight, when your child finally goes to sleep, look down on him, and know that you did something right. In the morning, when she smiles at you, smile back and agree to face this new day together. 22q does not have to rule your world. You can’t escape from it, you can’t ignore it, but you can learn to find joy and happiness again.