Saturday, August 7, 2010

My CF Parent Self-Care

This summer has been wonderful! I've actually enjoyed my roles: Peter's mom, CF caregiver, photographer on the side. Perhaps it's because I've identified that those are my roles (by my choice) and have stuck to them. I haven't been busy with other things. And although that's meant I've had to turn down worthy causes and activities, it's also meant I actually have time to take care of myself.

A book I would recommend to any CF parent is Parenting Children with Health Issues by Foster W. Cline, M.D., and Lisa C. Greene (a CF mom). One of the first principles the book covers is self-care. This passage really stuck with me:

"Parents of ill children need time alone and away to 'regroup' from the chronic stress of care. However, the more severe the chronic illness, the more physically and psychologically difficult it is to simply drop problems and participate in an activity that renew the individual and/or enhances the couple's relationship. Coping with a child's day-to-day health problems complicates respites and get-aways for the following reasons.
  • The more difficult the child's health problem is, the longer the 'wind-down' must be before the getaway is truly restful.
  • At the same time, the more difficult the child's issue, the harder it is to leave them for longer periods." (p. 8)
At first reading, I thought, Oh great. I need more rest than regular parents do! I also thought, There is no way I'm going to be able to do that.

Well, it's been a year or so since I originally read this, and I think I've found some ways to incorporate self-care into my life. Here's how I'm doing:

Running Club and the Gym. I like exercising--when I'm doing it--but it's so hard to get to unless you have a reason to go other than you ate too much and can't fit in your jeans (sigh). So, I joined the Running Club at my gym and go running with a group of ladies who now ask if I don't come! Peter is old enough for the gym daycare that I don't worry so much about him being around other kids and catching something. So, we go at least 2 or 3 times a week for mommy exercise/Peter playtime.

Swimming with Peter. There is nothing better than swimming at the pool in the hot Atlanta weather. Love it, love it, love it. We've also set up a weekly swim date with one of my friends from Running Club and her kids.

Early bedtime. A friend of mine suggested that I try putting Peter on an earlier bedtime schedule since he had started skipping naps, so now Peter is in bed by 7:30 or 8:00 and I have the rest of the night with my husband! It's awesome. We start  his Vest at 5:00, then Tobi for a half hour, dinner and oral meds, bath, nasal rinse/steriod, prayer, and song. The routine really helps and he's generally asleep 10 minutes after he's put to bed. (He usually sleeps 11-12 hours and is awake for 12 hours.)

Babysitters. In the spring, my husband and I went out for our first "long date" which meant someone else had to do all of Peter's night treatments and meds. As I was writing out the instructions, I realized, it's not that hard. Anyone can learn to do this! So, we regularly go out now and have some reliable babysitters "trained" on Peter's treatments and bedtime routine. We even had one of them do his morning routine when we went on a Photo Walk in Atlanta. Now, we are planning two days and a whole night away. We are so excited, and I already have the babysitting instructions basically done!

Friends and Phone Calls. It's important to know other people have been through/are going through what you are dealing with. I've gotten to know other CF parents and just parents in general. Their advice and encouragement has been very helpful. Since we don't have family in the area, we rely on friends for local support and resources.

Play Dates and Play Trades. Since Peter is an only child, he gets pretty lonely without anyone to play with. So, we regularly go over to friends' houses/have them over here for play dates. Sometimes friends watch Peter so I can go to an appointment or just have some time to myself. A lot of times I will invite a friend's child to play with Peter at our place. Peter does a lot better during the day when he has had a friend to play with.

Therapy. Last year about this time, I visited my sister and she suggested my anxiety and depression levels were out of control, so I made the decision to get some help. I have a great therapist who has been working with me. He is the one who prompted me to carve out time for myself, to get on a regular sleeping schedule, and look at the reality of my life, not just the irrational fears I have for the future. It is hard to be a parent of a CF child, and having professional help has made a huge difference in how I view our family's present and future.

Reading and Books on Tape. Lately, I've realized that I'm not much of a movie or a TV person. I'm not much of a game person either. I love to read, though. And I love to listen to books on tape or CD. So, when I need to wind down at night or I need a little "me" time in the day, I'll curl up with a book and read for a while. Listening to books during the day while I'm doing housework also helps. I try to keep the books appropriate for my little "reader" to hear too.

Vacations and Time Away. This summer, we went to Portland for my brother's wedding. Then, after the wedding, we hung out with part of my family and did tourist stuff in and around the city. It was the first real vacation we've had since Peter was born. The greatest part was having another family to trade off watching the kids with. Both sets of parents got a night out, and the kids enjoyed having company. At home, Jacob and I decided that we both need some time away on the weekends from everything -- from work, from CF, from Peter, from each other. So we have been incorporating at least a couple hours each weekend for one of us to have time alone to do whatever--shopping, resting, reading, or taking photos. It's really helped.

There's a little checklist in the Parenting book about self-care:

"We encouage wise parents to take good care of themselves by:
  • Enriching their relationship by taking vacations together away from the children, as well as taking individual breaks from the stress that full-time care of a chronically ill child can impose.
  • Ensuring they have bi-monthly or weekly date-night.
  • Ensuring the available respite care and support systems are in place.
  • Refusing to tolerate children's disrespect.
  • Modeling their ability to handle frustration and difficult time.
  • Making good nutrition, exercise, and sufficient sleep a priority." (p. 10)
I've got room to improve! (particularly in the nutrition and the date-night areas) But I'm not going to be disappointed that I'm not "there" yet, because after a year, I am doing so much better. Peter deserves to have role models that take care of themselves. After all, that's what we want him to do for himself one day.

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