Today is day three of my series with Jolene Philo. On
day one, I had the pleasure of
introducing her to you. On
day two, you were able to read the beginning of my
interview with Jolene and today, I am posting the second half of that interview.
Today, there is also an opportunity to win a
FREE copy of Jolene's NEW (just released) second book:
Wrap your hands around a cozy mug of something warm, get all snuggly and prepare to learn things about Jolene that will encourage and inspire you.
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Allen at about 1 month looking at the teddy bear a neighbor gave him. It look so much like the one on the Different Dream book covers that it still gives me shivers. The graphic designer didn't know about the teddy.
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*Tell us about the title of your books. How did you choose them? What do you mean by "Different Dream"?
Life had a dreamlike quality when Allen was whisked away by plane to Omaha, and we spent the next few days driving cross country to get to him. That sensation didn't end during his NICU. When we brought him home, the sensation lessened but never completely went away. Sometimes, life felt like a nightmare, it was so opposite what we had imagined life with our new baby would be like. But gradually, I realized it wasn't a nightmare, just different from our original dreams for our child and our parenting experience. Fast forward 20+ years to when I was thinking about a title for the first book. Different Dream kept coming to mind, so that was the title I put on the book proposal sent to Discovery House Publishers, and it stuck. Since it was published, the title has resonated with many parents, and they often commented on it. So when it was time for book number two, I used the phrase again. It's also the title of my blog. I was pretty surprised
DifferentDream.com wasn't taken already.
*How was your childhood/adulthood impacted by having a family member who experienced special needs?
In the 1960s, having a mom who worked full time and a dad who stayed home was not the norm. Still, I didn't think having a dad in a wheelchair was a big deal. Only as an adult did I realize what an extraordinary childhood my siblings and I had. We had skills unfamiliar to other kids. We could discreetly empty, rinse, and return Dad's urinal to it's carrying case. We knew how to set a table for someone with shaky hands - Dad's spoon (always a soup spoon) and fork (no knife because he couldn't cut) were on the left, a straw was in his coffee cup, and his meat had to be cut for him. My sibs and I could clean a pipe, fill and tamp down the tobacco, give the pipe to Dad, then strike a match and light his pipe as he puffed away by the time we were seven. But more than skills, we learned how inaccessible buildings could be to someone in a wheelchair. We learned how isolating Dad's disability became as he grew weaker, and we learned the blessing of friends who visited him week after week for decades.
I also learned how important it is to ask for help from friends and professionals, not just family members. That's something Mom didn't do very well, and her independence created a great deal of stress for our family. So when Allen was born, I did ask for help.
*What is your favorite chapter, quote and etc in your book?
Wow, that's a hard question. Usually, whatever chapter I'm reading is my favorite. But the story that impacted me the most came from a young mom named Brittany. Their first child was born with numerous birth anomalies. Brittany and her husband knew their baby wouldn't live long, and he spent all fifteen days of his life in neo natal intensive care. His mom and dad took their parenting duties so seriously they read the gospel of John aloud to their little boy. Brittany said, "It was something we could do." Those words are so profound and bring me to tears when I read them. Instead of becoming bitter about the parenting they couldn't do, they found something they could do. I wish I'd had that perspective when Allen was in NICU.
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| The feeding tube and string were put in place during emergency surgery at two months. |
*What was the biggest eye opener of the writing/interviewing process.The universality of the emotions parents of kids with special needs experience and their initial assumption that those emotions are wrong or sinful had to be the biggest eye opener. Parent after parent described how they grieved and then felt guilty about their grief. Many spent months and years try to explain away or deny the trauma they experienced. Only when they identified those emotions and dealt with them were they able to move ahead.
*What did you need/desire from family/friends when you were going through your crisis situation with Allen?
What we needed and received from friends was practical support. We lived in a very small community, and I was one of three teachers in the K-8 school in town. My students' parents and other people pitched in constantly. When we brought Allen home a month after his birth, they cleaned our house, restocked the refrigerator, took care of our garden, and mowed the lawn. When we had medical appointments or hospital stays, one mom substituted at school. People sent cards and balloons and did anything we asked. They even held a fund raiser for us. And of course, I mentioned the pastor and his wife who did a Bible study with us.
We lived in South Dakota, over 12 hours away from our nearest family, but they met our needs, also. They contacted friends for us to stay with when Allen was hospitalized in Omaha. They called often, came to visit when they could, and their homes were always open to us. As as a result, though we were far from home, we knew we were not alone.
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Allen after surgery
at Children's Mercy Hospital in Kansas City. |
*Over time, did the response from family/friends change?
Our son had a rough start. He recovered from the initial surgery at birth well, but had complications at 2 months that led to 7 surgeries and countless invasive medical procedures and tests until he was three. He had another surgery at age four and a final one at age fifteen. We moved to Iowa when he was three and most people didn't know of his health issues. Many of them thought we were paranoid or overly dramatic when we tried to tell them about his medical needs. He had no behavioral or intellectual issues at all, in fact he was very bright and charming, so again people had a hard time accepting our story. In one way, that was very good because he was treated like a typical kid. But sometimes it felt very lonely as we lost the support group in the town where we lived previously. Our family was always supportive and very understanding. They never changed.
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Allen at about 6 months.
Getting him to eat solid food wasn't easy! |
*How did you explain your son's diagnosis to others? (especially to other children)
It rarely came up. By the time he was in school, everything was under control. If necessary, we would do a little anatomy lesson - with kids and adults - and draw a normal esophagus and explain it, then draw Allen's version and talk about it. During those years, I taught fourth grade, and one of the science chapters was about the gastrointestinal system. I always added the Allen story to that chapter, and it always grossed out my students. Since fourth graders love to be grossed out, it was a perfect fit.
*How did you handle unwelcomed attention/questions?
That was a non-issue in Allen's case.
*What were the dynamics in your family? (especially between your son and daughter)
Our son is six years older than our daughter. They are now 29 and 23 and very good friends, though the age gap made it hard for them to connect during childhood. The biggest issue in our family was Allen's post-traumatic stress disorder (caused by all those early, invasive medical procedures) that was undiagnosed for 26 years. His behavior became increasingly erratic from adolescence on and resulted in him living far away in an isolated, structured community for six years. At the end of that time, he called and asked if we would help him "fix" what was wrong. After such a long wait, God moved swiftly and miraculously. Within a week, we had a PTSD diagnosis, within another week he was in intensive treatment, and within another week he was treated, home and whole.
*How was the relationship between you and each of your children different?
This story gets to the gist of your question. Allen had excellent eye-hand coordination (he started playing trap set at age 11), so learning to drive was a piece of cake. Anne's eye-hand coordination was poor, and she needed years of practice to learn to drive well. So we never worried about Allen getting somewhere safely, but we never knew if he was going where he said he was. Anne, on the other hand, could be trusted to go where she said she was going. But we were never sure if she would get there safely.
On the other hand, if we made eye contact with either of our children, we lost fifteen minutes of our lives listening to them.
*What kind of planning ahead did you need to do to ensure your family outings had the best chance for success?
This wasn't an issue as we didn't deal with anything other than average childhood meltdowns. When Allen was little and he dealt with choking and vomiting, restaurant visits could be adventurous. We took lots of napkins and left big tips.
*In your opinion/experience what is the best way for others to lend support when you are in a crisis situation?
Stay calm and offer practical support. Think about what to do for the family instead of what to say. Take a gift card, offer to pick up the other siblings, ask what needs doing at the house. If the family is too frazzled to give answers, just think of what would help you in a similar situation and see if it needs to be done.
*The holidays are approaching... What did your holidays look like during your crisis period?
Allen was in the hospital for his first Halloween. We went to my parents' in Iowa for his first Thanksgiving and scheduled a doctor's check up in Omaha on the Wednesday beforehand. We spent Christmas with friends in South Dakota (our first ever away from my family) because we were too tired to travel. Allen also had the chicken pox during Christmas vacation. But we were very grateful for the support of friends. That was the first year I understood the enormity of the gift of God's Son at Christmas. Isn't that true for all parents? Once they have children and love them so fiercely?
*Knowing you probably really appreciate holidays now, what traditions do you celebrate/create with your family?
Our biggest tradition is probably that we rarely celebrate Christmas on Christmas. Hiram was an ICU nurse while the kids were little and usually worked on Christmas Day. Our kids say their memory of Christmas is of waking up really early to open stockings before their dad left for work at 6:30 AM and then waiting all day long to open presents when he came home. Our extended family usually celebrates Christmas before New Year's. We are a family of cooks so we enjoy making pies (with homemade lard crust), an old family recipe for plum pudding (really a spice cake with wild plums), tapioca fruit salad (an recipe from my grandmother) , mince pie, and my mom's killer Chex mix. We have a serious gift exchange and then a free-for-all white elephant gift exchange after that. Way fun!
*Do you have any mementos from the childhood of your children? what are particularly precious to you?
I still have the tiny blood pressure cuff Allen wore in NICU. It's draped over the picture frame of his baby picture. I also have a pair of stunning cat earrings that Anne gave me when she was quite small. But my favorite mementos are the sweaters Hiram's mom made for the kids (she was amazing) and the clothes my mother sewed for them. I have those things stored in boxes in the attics. One day, I hope our grandchildren will wear and enjoy them.
*If you could go back and do it all over again knowing what you know now, what would you do differently?
I would relax more and enjoy parenting a child with special needs just as he/she is. I wouldn't worry so much about trying to get back to "normal" because there is no normal. And I would take an electric breast pump back in time. I had to pump for an entire year because Allen was allergic to anything except breast milk. The pumps in 1982 left a great deal to be desired.
*Now that your children are grown and involved in living their own lives, what are things that you really enjoy doing now that you could never have done back then.
Getting to know our kids as adults and becoming friends with them and their spouses is absolutely delightful. Apart from them, it is wonderful to have time to think and plan big writing projects. It's also fun to be able to watch movies and TV shows that are good but not appropriate for children. Most of all, I enjoy being able to go for a long walk every morning and come home to think and write for long periods of time.
*Did you have "girlfriends" when your son was in his crisis period? How did you maintain those relationships?
Yes, I had girlfriends. Thankfully, one was my son's day care provider and others were parents of my students. So we saw each other frequently, and they were always there to listen to me. During our son's adolescent years I had several church sisters who prayed for our family faithfully and listened when I needed to unload. Now that our life is on an even keel, I have had several opportunities to give back to them as they've experienced their own crises.
*What advice do you have for those currently in the trenches?
Don't try to do everything by yourself. Ask for help, even if that means giving up having things done exactly as you want. Train other people to care for your child and let them do it so you can get away now and then. If your spouse offers to help with anything, accept the offer. If he or she doesn't do it exactly the way you like, keep your mouth shut. Whenever possible, let good enough be good enough. Require perfection only when absolutely necessary.
*Do you have any organizational tips for those of us who struggle with having enough hours in the day?
When you're cooking, make double, triple or quadruple batches and freeze the extra. That way you'll have meals for those days when there's no time to cook. Ask friends to help with things like laundry, yard work, and running kids to and fro. Hire a cleaning lady if you can or an assistant.
*How did you organize your son's medical records?As I recall, the doctors kept them. When we moved, they gave them to us to give to his new doctor. When Allen became an adult, we got a set of them and sent them with him. I don't know what he's done with them since.
*Did you ever compare yourself to what you thought was the perfect "woman/mother" figure? (maybe a fictional character, TV mom, etc)
This will date me, but I always wanted to be as funny as Carol Burnett, as nice as Mary Tyler Moore, and as pithy as Rhoda Morgenstern. Never, ever did I want to smile as much as Carol Brady.
*What did you decide was ok to "let go" when circumstances required it? (home cooked meals? cleaning? being involved in outside activities?)
Cleaning was and still is the first thing I am willing to let go. Thankfully, we have a wonderful cleaning lady who comes once a month. Cooking and baking are therapy to me, so I don't like to let go of that. But I do a lot of simple cooking and always have meals in the freezer. I learned early on to say no to most things and concentrate on the ones I felt God calling me to do. I say yes to things 1) I feel God has equipped me to do, 2) things I enjoy and have time to do, and 3) a few easy things that require no extra planning. I also look for ways to connect with people outside of our church family since it's hard to be salt and light otherwise. As our pastor says, there are lots of good things to do, but we need commit only to the best ones.
*Did you ever accept philanthropy from others? what was that like for you?
A fundraiser in the South Dakota town where we lived raised $1500 for us in 1982. That money allowed us to fly rather than drive to some Omaha appointments. Other than that, our insurance was very good. So we didn't need much help.
*Were finances/paying for treatments ever an issue? how did you work through that or make decisions?
Sometimes we arranged to pay so much a month on our bills. But somehow, we always managed to pay the bills within a year of treatment.
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| Going down the slide after Anne's wedding in July of 2010. |
*Did you ever shock your children with a silly moment?
I have been known to burst into song in their presence. My rendition of Ariel's "Ah-ah-ah-ah, ah-ah-ah-ah" from Disney's Little Mermaid is quite stunning. I know this because it always makes their eyes roll back in their heads. They were also quite surprised at how determined I was to end up with the Easy Bake Oven that was among the Christmas white elephant gifts a few years back. It was the fulfillment of a childhood wish.
*If we could peek into your window on Christmas Eve, what would we find you doing? What would you have been doing 20 years ago?
This Christmas Eve will be quiet as our kids won't come home until after Christmas. We will go to Christmas Eve services at our church. I will also be praying for a dear friend who lost her husband last year on Christmas Eve. Twenty years ago, our kids were ten and four. We would have gone to Christmas Eve services and then driven around town to look at the lights. We even had a "Waa-Waa" rating system of one, two, three, or four "waas." One "waa" was a few lights outside up to "Waa-Waa-Waa-Waa" applied to houses that lit up the night sky. Such fun! We still talk about "waa-waa" houses.
*What is on your Christmas list for Santa this year?
Really, truly, a few days with our kids and their spouses and then gathering with my extended family is enough. Other than that, a year's supply of hot drinks from our local coffee shop would be nice.
*Do you have a favorite Christmas movie? The Christmas Story
*Do you have a favorite Christmas song? John Denver and the Muppets Christmas albumm
*Do you have a favorite holiday treat? Grandma Josie's tapioca fruit salad.
*Do you have a favorite holiday appetizer? Parmesan cheese ball with Toasted Onion Crackers.
*Have you ever made a gingerbread house?
Yes, when I was a young, foolish college student with time to burn. It turned out well.
*Your Christmas wish for your readers...
That they will know Christ and his love in a new and real way.
Thank you so much to Jolene for allowing me to interview her! I loved getting to know more about her and would love to hear more about her rather diverse acting career. ha! ha!
As an added bonus, Jolene has generously donated a copy of her new book - just released last month:
Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs for me to
give away to one lucky reader!
To enter the drawing to receive a FREE copy of Jolene's new book just do one or more of the following before December 20th:
* Comment on this blog post
* Sign up to "Follow" my blog (and leave a comment letting me know you did)
I hope you will check back tomorrow as I share one of Jolene's favorite recipes... It looks so yummy, I can't wait to make it!!
Also, if you get a chance, feel free to check out Jolene's blog
http://www.differentdream.com/
