|Jolene's Son: Baby Allen|
Just a few hours after birth
Yesterday, I introduced you to Jolene Philo: my friend and the author of two amazing books.
Jolene's newest book (just released) is
A Practical Guide to Raising a Child with Special Needs.
Jolene graciously agreed to an interview and she was very open, honest and candid with her answers. The interview will be posted in two parts so find a cozy nook to settle in and get ready to meet a lady who is having a great impact on children, parents, teachers, social workers, hospital staff, caregivers, and many countless others.
Q. What was the catalyst that made you decide to write the Different Dream books?
I wrote Different Dream Parenting and my first book, A Different Dream for My Child, for one reason. Twenty-nine years after the birth of our son, the memories of his weeks in NICU are still fresh in my mind. I remember how alone we felt. We were 25 years old, 750 miles from home, clueless. If there’s anything I can do to help parents in similar circumstances know they are surrounded by people who care, I will do it. If I can make them understand they are God-appointed to advocate for their their children, I'll keep writing.
Q. Explain your son's diagnosis and what exactly made it life threatening.
At the time, the doctors called his birth anomaly a tracheo-esophageal fistula (TEF). These days they add "esophageal atresia" to the beginning of that, so it's alphabet soup name is EA/TEF. There are many versions, but in our son's case, his esophagus came down from the mouth several inches and formed a blind pouch. It came up from his stomach and hooked into his trachea. Many children who have EA/TEF have other birth anomalies, but Allen did not. As you can imagine, the condition requires medical care and early corrective surgery or the child dies.
NOTE: To learn more about EA/TEF click here
Q. Before your son, what were your experiences with children with special needs or crisis caregiving? (in other words, was this situation new to you?)
We had little experience caring for kids with special needs. But I had a minor in special education and had done several practicums in college in special education classrooms. Also, my father was diagnosed with multiple sclerosis when he was twenty-nine. I was two at the time and only remember him being in a wheelchair. He was in our home while my siblings and I grew up and we were actively involved in his care. So care giving was not new to me.
Q. Give us a peek into your pregnancy with your son. Did you have any thoughts and feelings during that time that you felt were "heaven sent" to prepare you for what you would soon face?
My pregnancy was quite normal though my blood pressure was always a little high and the further along I got, the more it looked like a basketball was stuck on my stomach and hard as a rock. And when the doc let us listen through his stethoscope during check ups, it sounded like Allen was crashing from one side of me to the other, yet I felt very little movement. (I didn't realize how odd that was until six years later during my second pregnancy with our daughter.) But we had no premonitions during the pregnancy that anything was wrong and ultrasounds were brand new and rarely used. I thought it was pretty cool that Allen was born a week early, the day after school got out, so I had one more week with him. That was in the early hours after his birth, before we knew anything was wrong, of course. Mostly, we were just glad to get to the hospital before he was born. My labor was only about 2 1/2 hours and we lived 90 miles from the hospital, with the first 55 miles a windy, scarcely populated gravel road.
|Allen at 3.5 weeks: Coming home from the NICU|
Q. Were you private or open about your son's diagnosis and needs?
Very open. Getting food stuck in the stricture where they rejoined the esophagus was a real danger. So we had to be open with day care providers, teachers, and babysitters. When he had a surgery at age 15 (2/3 of his lower esophagus was removed because of what they believed was pre-cancerous tissue), I emailed regular reports to his teachers. They read the reports to his classmates.
Q. Did you experience a period or varied periods of grieving? What did that look like for you?
Just a few days ago, I was looking at the trailer for my new book, Different Dream Parenting. It includes several pictures of Allen in NICU, and I felt so sad again about not being able to bring our baby home after he was born like other parents do. So grief lasts a long time. I remember grieving on his first Halloween because he was in the hospital and couldn't wear the little costume I'd made. Then I thought my feelings were wrong, but they were grief for a loss. And it's okay, even necessary, to grieve those losses.
Q. What benefits could someone who does not have or know a child with special needs take away from your books?
The books give others a glimpse into life as the caretaker of a child with special needs. Many people who read the first book, A Different Dream for My Child, have commented that they had no idea it was so complicated and difficult. It also helps them know how to begin a conversation with parents. The second book, Different Dream Parenting, is a valuable resource for anyone working with families who have kids with special needs - educators, health care workers, friends, church staff. It can help them help families tap into available resources.
Q.What is the one message you want to convey via your books:
Parents of kids with special needs often feel isolated. The one message I want to convey is that they are not alone. Many other parents have experienced similar trials and emotions and so did God when he sent his Son to earth.
|Baby Allen: |
So alert to what is happening to him
First photo of Allen after surgery. He is three days old here.
Q. What is your faith/belief system founded on? What is your faith background?
My husband and I were both raised in church going families and became Christians as children. But our first real faith test came with Allen's birth and subsequent medical issues. Our pastor friend and his wife led us through the book of James. At least that's what Hiram says. The only thing I remember is that they cared enough to come. They were the hands of Christ to me. But whatever they said made a difference because my faith and Hiram's grew by leaps and bounds during those early years with our son.
Q. How did you and Hiram meet? When did you know he was "the one"?
Believe it or not, we met at the freshman orientation dance at college and the rest is history, At least it was history once we finally found each other again and started dating. Actually, I knew where he was, but it took him longer to find me. Mainly because he was so shy that he kept looking down at the sidewalk and didn't see me trying to catch his eye. He was such a nice guy and so sincerely trying to live his faith, I didn't need to look for anyone else.
Q. During this time of crisis and in the years that followed, what did you find that you "needed" from Hiram, your husband.
My husband Hiram gave me what I needed, though it wasn't always what I thought I needed. I thought I needed a husband who would make everything okay by doing big, dramatic things. But what I needed was a rock, and Hiram was always there for me and our son, Allen. He actively parented our son, rubbing his little cheek in NICU while I rested and recovered from childbirth. Once Allen was home, Hiram often slept in a recliner holding Allen and jiggling his tiny bottom all night long so I could sleep. While I asked God why our son had this birth anomaly, Hiram accepted it and kept going. When I said we needed spiritual support, he asked a pastor in town to do a Bible study with us.
Q. What was most helpful to you when in a crisis situation?
Hiram was my biggest help. He is extremely calm in a crisis. He began EMT training during the year after Allen was born so that somebody in our house would be able to intervene medically (we both knew it wouldn't be me) if necessary. He enjoyed the training so much he eventually went back to school and became a nurse.
Q. Did the stress put a strain on your marriage? How did you work through that?
This was never an issue for us.
Q. Hiram's name sounds deliciously Amish. To me, his name sound so strong yet comforting. I'd love to hear the story behind his name! (guilty question that I have always wanted to ask.. ha! ha!)
You crack me up, Amy. Hiram is a twin. He and his brother are named after their mom's dad, Hayes, and her older brother, Harold whose nickname was Hiram. Why was his nickname Hiram? Because he was a preacher's kid with the last name Walker. They were a family of teetotalers, so his friends called him Hiram with a wink and a nod to Hiram Walker whiskey. So while his name sounds Amish, my teetotaler husband is named after whiskey.
Q. Did Hiram ever surprise you in a time when you REALLY needed "something" from him?
Does the year he gave me a toilet seat for Christmas count?
Q. Your advice to couples?
Don't give your wife a toilet seat for Christmas.
Q. What provided a source of strength for you in hard times? (any quotes, verses, songs, etc that particularly lifted you up?)Knowing that people cared and were praying for us was my greatest source of strength.
Q. Did you have a "safe friend"? (someone you could say anything to - even yell it - and you felt perfectly safe in that relationship)
Again, that would be Hiram.
Q. Were friendships with other couples difficult to maintain? How did you handle this?Because of the dynamics of the small town where we lived, that was not an issue. We had to make our own fun which usually consisted of hauling all our kids to each other's houses. The older kids would take care of Allen (he really was the town pet being the son of the school teacher) and we would all eat supper together and go home when the kids got tired.
Q. How did you balance parenting, teaching, being a wife and investing in yourself?
During the first school year after Allen was born, God blessed me with a wonderful group of students. The days were so busy with them, I didn't have time to worry about Allen, which was another blessing. When at home, I was quite a worrier that first year, until I finally realized that Allen was in God's hands whether our baby lived or died. At that point, I was able to enjoy being his mother. Really, there wasn't much time for myself for about three years, until Allen's health improved and the trips to the doctor let up. When we lived in South Dakota, doctor's appointments were a 240 mile round trip. Sometimes we would stay overnight in a motel with a pool. Often we went out to eat after appointments, just for a break. The most fun I had was in the summer when a neighboring town did a community theater production. Hiram stayed with Allen so I could be in the shows. It was nice to pretend to be someone else for awhile!
Q. Tell us a few things that most people don't know about you.
Every one of my elementary school report cards includes a comment along the lines of "Jolene needs to quit daydreaming and get her work done." I was very involved in drama in high school and college. Among other noteworthy roles, I have played a nymphomaniac, a hedgehog, and a deaf drunk in a nursing home. In another play, I wrestled with a priest in a straight jacket.
Q.How did your personal upbringing (the parenting of your parents or life lessons you learned) prepare you for the life you have led?
My parents were an example of perseverance and commitment. Mom cared for Dad in our home from 1959 until 1983 when he went into a nursing home. From then until his death in 1997, she visited him every day. She honored the "in sickness and in health" vow to Dad's last breath. Though she has never been comfortable saying "I love you" she taught me what love is. She was also a very good money manager and taught me to always live within my means and save as much as possible. My dad was an incredibly funny man, and my sense of humor comes from him. No matter how bad things get, I always look for the humor in what's happening and think of Dad.
Q. Do you have an example of a time where ... while going through something, it made no sense or didn't feel fair, but later - much later, saw the purpose in it or were able to help someone because of it?
Hmmm...basically my entire life has been an example of that idea. Everything I write comes from what seemed unfair at the time, but resulted in experience through which I can help others.
Q. Tell us about your blog
http://www.differentdream.com/ features resources and products for parents of kids with special needs. Several guest bloggers (including Amy) share stories of their lives parenting kids with a variety of special needs, too. Reading comments from those who visit the blog is a highlight of my day. I love to connect with them and point them to resources. If readers click on the "buy the books" tab, they can watch book trailers, download excerpts from both books, and follow the links to their Amazon pages. Or people can email me and order signed copies.
***Stop in tomorrow to read Part 2 of my interview with Jolene Philo***