Monday, August 15, 2011

Respite: 'It needs to be a way of life'

I'm back from holiday and wanted to share an interview we ran in the summer print issue of BLOOM. Tim and Gina Gort of Grand Rapids, Mich. have three children: Gwendolyn, 8, Violet, 2, and Eliza, 1 (photo above). Gwen and Eliza have cerebral palsy and use g-tubes and Gwen has a tracheotomy for breathing problems. This year Tim and Gina each took a week long respite or ‘retreat,’ on their own, while the other parent held the fort at home. The family has nursing care during the day, but supports the children alone at night. “As Gwen got older, and then Eliza came along, I realized respite needed to be more than a break—it needed to be a way of life,” says Gina. The Gorts inspire me with how they're making 'time away' an essential part of their lives. Let us know what you do for respite! Louise

BLOOM: Why is respite critical?

Tim Gort: The most important thing is to acknowledge that you can’t handle things anymore and you need a break. The alternative is to become burned out or inoperable or to take out your stress and sleep deprivation on your spouse. For me, it was a lot of things. I had been running on auto-pilot and then Eliza’s diagnosis pushed me over the edge. By removing yourself from the situation you clear your head and have a deeper appreciation for your family and children and what they’ve taught you. You come back refreshed and re-energized.

Gina Gort: I have to go away to not only get a break and get rejuvenated, but to come back with tools and ways to be in my situation and be okay with it. Now everyday I make time to write and I make time to meditate. Respite is now something we implement on a weekly basis. We have date nights. On Tuesday night we separate and Tim may go to a support group or go golfing and I may go to a writers’ group. On Friday we do something together that’s romantic, if possible. This is new for us and it’s taken us a long time to get to this point.

BLOOM: What supports do you have for date nights?

Gina Gort: Nurses and a babysitter. It’s extremely hard letting go and getting to a trust point. Especially with Gwen, who has respiratory issues. You have to accept that these people are caretakers, they’re not you and they won’t do things exactly the way you do them. But you give them the best tools and a ‘dos and don’ts’ list and you trust in them. You need to be able to walk out the door, mentally and physically.

BLOOM: Describe the 10-day retreat you went on Gina.

Gina Gort: I chose to go to a convent. I wanted to make a drastic change in my life. I felt that by going away to a place where I could be silent, in retreat, I could re-examine myself and look at who I am and how I’m defining myself. Every day I met with a spiritual guide who is a sister. I’m not religious at all and she was very open to that. She would prompt me with questions and I’d spend the day reflecting on my answers. One question was: “If you could go back and change your life, what would it look like and how would things
have to be for you to be happy?” Initially I saw myself at our cabin on the lake and I saw Gwen walking on the beach and I saw Eliza sitting up. And then it shifted and I thought “I don’t need my children to be normal to be happy.” I’m already happy and I need to accept what I have and go forward and stop looking back and saying “What if, what if?” I did meditation in the morning and yoga, reading, writing and reflection.

BLOOM: What impact did the retreat have on you and your family?

Gina Gort: It was huge. I have patience. I’m more honest with myself and therefore I can be honest with Tim. I’m not thinking three steps ahead. I’m really focused on being in the now and loving it. My relationship with Gwen has always been difficult, but since I’ve been back it’s been totally different. It’s like we’re on the same page. There was a time I would get angry and resentful towards her because I was strung out. Now I’m patient with her and she can feel the difference.

BLOOM: Tim, what activity did you choose for respite?

Tim Gort: I chose to go to the Smoky Mountains to do a backpacking trip. I needed to do something physical because I felt like there was a lot of grieving that I had to do—not only about the acceptance of Eliza but with other issues and with Gwen. I needed to break my body down physically before I could work on the mental stuff. I hadn’t had a physical outlet for a couple of years. I was able to be gone long enough to really miss my family and really want to come back. I feel like my physical self is ready to go forward, but my mental self is still lagging behind. I’m working on getting another therapist that can hlp me with both. And I’m thinking about a second, seven-day retreat, maybe at a monastery.

BLOOM: How can you afford these longer respites?

Gina Gort: At the convent I paid $80 dollars a day and that included three square meals, a place to sleep and a spiritual director. When I hear people say they can’t afford respite, I say look at your tax returns. When someone asks you what you want for Christmas, say you want to go on a respite. Have a garage sale and put the proceeds to a respite. It’s necessary.

BLOOM: How did you manage your children’s care on longer respites?

Gina Gort:
We have nurses during the day and on the night shift, each of us is on our own. Tim was the major caretaker when I was gone. Violet was able to spend some time with relatives. We know that as part of our relationship we have to support the other person and that our workload will double. For people who are single parents, you have to lean on whatever support group you have.

BLOOM: I haven’t heard of many parents taking these retreats?

Gina Gort: Parents in our community have been astounded and shocked. We’re teaching them and they’re excited and ready to try this for themselves.

Tim Gort: The breaking point for us was Eliza’s diagnosis. We were going through life with an older child with CP and had a second child. When we decided to have Eliza, we assumed everything would be fine, just like Violet. When it wasn’t, it was a complete shock to our system. We had already been through eight years with Gwen and we were starting over with another child with special needs. It brought up all the issues we thought we had covered—the emotions, the grieving. We were even seeing some of Gwen’s old therapists! Being able to see Eliza’s future in Gwen was very difficult and it’s still very difficult for us to separate them and not compare them. Then there’s the grieving for Violet, who is the 2-year-old sandwiched between two kids with CP. The reason we wanted to have a third was so that Violet would have a playmate.

BLOOM: What other advice would you give to parents in similar situations?

Gina Gort: We’ve solved a lot of our issues just by talking to a therapist and then coming up with our own solutions. Having a third party to observe and help you along has been critical for me. We’re both writers so we do a lot of self-discovery through writing. You don’t have to be a writer to keep a journal. Journaling doesn’t cost any money and if you just write down what happens that day, it often transforms into how you’re feeling, and then ‘why’ you’re feeling that way.

BLOOM: Do you rely on extended family for care?

Gina Gort: Other than with our middle child, it’s very minimal. They have to work through their own grief. Everything relies heavily on Tim and I working as a team and thank God we have nursing staff now.

Tim Gort: We’ve also built our own support system by finding the right friends and thinning ourselves from people who don’t support us. We have a lot of friends we can count on for meal support or for emotional support.

BLOOM: How often do you plan to take a longer retreat?

Gina Gort:
I plan to do it once a year.

Learn more about the Gorts on their blog at The Gort Family.



What a great interview. I'm especially struck by the resolve of both the Gorts -- that despite financial circumstances and the myriad other reasons we all come up with to justify NOT taking a respite, we MUST figure out a way to do this. I have longed wished to start a non-profit organization that would work toward helping people both financially and otherwise toward respite. I wonder if the Gorts have considered doing something like this.

Very good story it helped me with trying to get respite and not give in to the guilt... My husband and I take trips sometimes once a year he went to California now it's my turn to go somewhere nice this story helped me to realize that I can go on a much needed trip with my husband we need to connect and not feel the guilt.. I also liked the question about family helping the Gorts, they spoke about it with grace my family is very scared and my husbands family is in denial so I so can relate to this story it was so encouraging to say hey let's just get a break and find some quite time for us!