A Chat with Sarah D

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Hello everyone! I am Sarah. I live with my husband in Southern California and am mommy to three little ones.  Malakai is 11 and in 6th grade, Aubrey is 10 and in 4th grade, and Keturah is 8 and in 2nd grade.  Keturah was born with multiple health challenges, and whereas we like to think we have our routine down, wrenches can get thrown into the mix sometimes.  I teach piano lessons at a WELS (Wisconsin Evangelical Lutheran Synod) Elementary School in Southern California and California Lutheran High School.  The first two days of the week are extra busy trying to get everyone out of the house so I can get going on back to back lessons for two straight days.  Most days I try to get up by 4am with my husband so we can start our days exercising together.  But some days the spirit is willing and the body is weak.  Keturah’s day nurse works with us and goes to school with her Monday through Thursday and arrives at 6am to help get her ready for school.  She helps disconnect her from her ventilator and pulse oximeter, and gets her into her breathing treatments and vest which break up the mucous in her lungs, and draws up the rest of the medication to take with to school.  She’s usually finished with that by the time I come down in the morning to finish the rest of her medical care that she only allows mommy or daddy to do. We have a half hour commute to school each day.  It usually takes longer to get home in the afternoons with traffic.  The kids are great managers of their time and take advantage of the long commute to try to get homework done in the car.  Fridays are usually reserved for Keturah’s weekly Dr’s appointments, which are at her Children’s Hospital about an hour away. Since I don’t have a day nurse that day, we try to arrange as many appointments into that day as possible and Keturah misses school for that day.  Wednesdays and Thursdays are my flex days to fit in other appointments or meetings for volunteering I do at Keturah’s Children’s Hospital or catch up with work around the house.  Depending on the day and season, the kids have various afternoon activities.  We drop our nurse at the house to finish charting, the kids do a quick change and grab their snacks, and we’re out the door again. Football, Basketball, Gymnastics, Water Polo, Baseball, Theater Performance, Modern Art, Dance….you name it, they’ve probably done it.

When all the afternoon activities are finished we head back to the house where the kids finish homework and I make dinner.  My husband usually comes home around 5 so he’s able to help with homework or sitting at practices that go later into the evening.  The kids take turns practicing piano and we eat dinner together.  Keturah has to repeat her breathing treatments and vest in the evening, which leads straight into her evening care routine and more medications to keep her in tip-top shape.  We try to all sit together in the evenings after all the homework, music practice, and medical care is done for my husband to lead us all in devotion before the kids go to bed.  Our overnight nurse usually shows up at 10pm to take care of Keturah during the night.  Sometimes we don’t have all our overnight shifts covered, so my husband and I are responsible for feeding her through her feeding tube in her stomach while she sleeps as well as answering all her alarms from the various machines that monitor her as well as keep her breathing during the night.

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Can you share a moment when you saw God's hand clearly guiding you?

When my youngest child, Keturah, was born, she wasn’t breathing.  The Dr’s called a code on her and she was immediately whisked away.  That started our journey of hospitalizations, surgeries, and learning a new way of life.  By the time Keturah was 3, she had spent more than half of her life in the hospital and had more surgeries than I can count.  She has a tracheostomy to breathe including a ventilator that breathes for her while she sleeps, and a feeding tube in her stomach to eat, and she requires lots of daily medical treatments and weekly appointments to keep her the healthiest she can be.  We’ve been to 5 different children’s hospitals across the country seeing various top specialists for Keturah to receive medical treatment.

When Keturah was still an infant, we decided to take her across the country to another Children’s Hospital for a second opinion.  The top pediatric airway specialist is in Cincinnati, and we decided we wanted to take her to see him because she was still struggling so much with each breath and was failing to thrive.  Her breathing at the time was extremely noisy – called stridor.  Every breath sounded alarming and scary and she turned blue every time she cried.  In arranging our travel plans and getting oxygen arranged for the flight, I was reading about what would happen if there was a medical emergency, as it would be a long flight from California to Ohio.  I had read that if any personnel working for the airline felt that the passenger would not be able to complete the flight without a medical emergency, they could refuse to let them even board the plane.  We had an entire team of Doctors set to see Keturah over the course of an entire week, and I felt that given how noisy she was, I couldn’t risk them not letting us board our flight.  I just had this gut feeling that flying was all wrong.  So my husband and I discussed a plan of action and ultimately decided to rent an RV and drive across the country for four days with a critically ill 9 month old, a 2 ½ year old, and a 3 ½ year old.  I still shudder at the thought! What on earth would possess us to DRIVE that far with three little ones?? Our plan was to drop off the other two little ones in Wisconsin for the week with my parents while we took Keturah to all her appointments.

To try to make a very very VERY long story short, the Doctors determined that Keturah has a brain malformation called Arnold Chiari Malformation which was causing her to stop breathing while she was sleeping and her oxygen levels to plummet to severely low levels.  She needed immediate brain decompression surgery.  The Neurosurgeon told us that her condition was so severe when we brought her to them, that if we would have flown with her, she would have gone to sleep on the plane and never woken up again.  Our one week of appointments turned into a two month hospitalization as diagnosis after diagnosis was given.   It still gives me chills to think that God guided us through arranging our travels and made sure that as insane as it sounded to drive across the country with three babies, it was the right decision to guard and protect our baby girl and ultimately discover so much more about her medically than we had known before.

Oh, how incredible Sarah! Please share, what bible passage is your favorite?

I have so many favorites, but if I have to choose one, I would choose my confirmation passage.

“Never be lacking in zeal, but keep your spiritual fervor serving the Lord.  Be joyful in hope, patient in affliction, faithful in prayer.”  Romans 12:11-12

In 8th grade we chose our own confirmation verses.  It was important for me to choose something that could encompass whatever would come along the path that God had chosen for me to walk.  At the time as a 14-year-old, I had no idea what that path would look like.  But I have gone back to this passage time and time again to remind myself that in all I do, I’m serving the Lord, and no matter what challenges I may face, I should always look to Him as my guide.  It reminds me to carry certain virtues…to be zealous, joyful, patient, and faithful.

What do you feel is your unique role as a woman?

No woman is created equal and each woman’s role is different in her own life.  As a young girl I felt a woman’s role was cut and dry.  I didn’t realize it was so complicated.  My role changes consistently and it can be difficult trying to keep up with how many times I have to change my hat throughout the day.  First and foremost I’m a wife and mother.  I adore my little family and everything that makes it special.  I like to carry the traditional role of housewife by being the primary housekeeper and chef, though over the years due to life’s circumstances, my husband has become extremely helpful around the house to dramatically reduce my burden and stress levels.  I try to support and encourage my husband in his work and personal endeavors and try to spoil him any little way I can.  As a mother, I try to set a good example for my little ones of what a healthy Christian marriage looks like.  For my girls, I try to be an example of a vibrant and eager Christian woman trying to make a difference in the world no matter how miniscule it may seem.  I’m chief homework helper (except when it comes to math…that’s up to my husband), music teacher, fashion expert, shoe finder, disciplinarian, and cuddler.  Along with being mommy, I’m also Dr. and nurse to Keturah, a private piano teacher, and a volunteer and special needs advocate.

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Who is your strongest Christian mentor?

I was blessed to be raised in a Christian home where my parents used the word of God to instruct us in our upbringing.  My dad is a WELS pastor and my mom gave my brothers and I the gift of staying home with us.  My parents made every effort to keep Christ at the center of our Family’s everyday life including family devotions at the dinner table.  When life got busier as we got into high school and activity schedules of 6 kids started to interfere with everyone sitting at the table together for dinner, my mom would wake up extra early to make breakfast so we could still have our daily devotion at the breakfast table together.  They created a strong presence of Christ in our everyday lives.

How did you get started glorifying God through volunteering?

I was referred to the patient and family centered care coordinator to be on our Children’s Hospital’s Family Advisory Council.  Through that council, the other members and I would sit in meetings and provide feedback to different subcommittees throughout the hospital about patient and family perspectives, whether it is NICU, Med/Surg, Patient Safety, Ethics, Integrative Medicine, etc.  When CHOC (Children’s Hospital of Orange County) was building their new tower, the patient and family perspective was included to help it become a premier hospital.  We had families sitting on art committees and giving opinions about even things as simple as navigation of the two different towers and numbering rooms.  I’m now considered a Family Partner with the hospital and have had the opportunity to do speaking engagements and education with incoming nurses, psychology students, and even Doctors. My friend started a program called the “TouchStones of Compassionate Care”.  I was able to bring that program to CHOC and we’ve implemented it with Physicians and Residents conveying the message to “Allow kindness and compassion to guide you, and above all else, be a physician who cares.”  You can see more information about the program, including our video at www.touchstonesofcc.blogspot.com.

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I’ve also spent the last several years volunteering with Children’s Miracle Network for CHOC and the CHOC Foundation to help raise funds for the hospital.  It can be as simple as stopping at Costco or Rite Aid to help sell Miracle Balloons, writing a thank you letter to an organization, or speaking at an event!  The kids are always included in the fundraising opportunities and have had their opportunities to share with others what the hospital means to them. I always try to convey to others in my speeches that we are thankful to God for providing the doctors, nurses, and therapists who’ve worked with our family over the years….God is the one controlling all of that.  Yes…these people are amazing, but I strongly believe that God guides the surgeon’s hand.  I’ve had the joy of speaking to psychology students and to witness my faith to them as the strongest asset I’ve had in dealing with Keturah’s challenges.  I also get to use the opportunity of serving others to teach my children the value of doing for others and not just ourselves.  The ripple effect…maybe we won’t be able to touch everyone’s hearts.  But whoever we do reach will reach to someone else and it will continue to spread.

In my spare time (if there is such a thing) I also use my musical skill set to help coordinate music at my church.  I play piano and organ, sing, and help arrange vocalists and instrumentalists and practice with them.  I love using music to edify others’ worship experience, and music helps me express my own emotions as well as provide a release that I can’t get anywhere else.

Is there anything from Titus 2:3-5, our blog’s mission, that you would like to comment on?

Titus 2:3-5, “Likewise, teach the older women to be reverent in the way they live, not to be slanderers or addicted to much wine, but to teach what is good. Then they can train the younger women to love their husbands and children, to be self-controlled and pure, to be busy at home, to be kind, and to be subject to their husbands, so that no one will malign the word of God.”

Many of us are surrounded by Christian women of all ages and yet we don’t necessarily feel deeply connected to all of them.  We tend to gravitate towards our own generation, mingling with them for conversations and sharing our day to day lives and experiences with them. Many women don’t feel they can relate to the other generation…young or old.  Women of all ages sit in judgment of one another from afar but don’t step in to actually help one another.  If we were to open up beyond the age barriers I feel we would be able to learn a lot from one another.  Older women have experience that can be useful in encouraging younger women of Christ.  They can use their wisdom to show these new wives and mothers that God has a plan for them and their lives and their challenges will pass with time.  They can use their grace to give hope to those who need it.  Our younger generation would benefit from opening their hearts and listening to those words of wisdom and trying to implement their seasoned opinions into their homes, marriages, and lives.

How can we encourage our husband's  faith and role in marriage?

I recently gave this advice to my brother and his bride at their wedding last year as part of my toast to them.  I feel that today’s generation lives in a sort of fantasy land.  I’m guilty of seeing the world through rose colored glasses at times.  I feel that so many couples are quick to abandon their marriages because it has become acceptable as a whole by society.  When couples separate or divorce, they are often times asked “What happened?”  A lot of times you will hear these responses.  “I just didn’t love them anymore.” Or “We fell out of love.” Or still yet, “They aren’t the same person I married all those years ago.”  When I look at my husband and myself, that last one really hits home with me. Neither of us is the same person we were when we married one another and took our vows.  God has sent us challenge after challenge during our seemingly short whirlwind marriage of 12+ years thus far.  So much has happened in such a short time.  Each time God gives us another challenge it’s like we’re walking through fire.  We have managed to survive each time and have come out on the other side.  But when the smoke clears, we realize that we have come out badly burned at times and we are scarred.  There are parts of us that will never be the same again.  For better or for worse, our life experiences are constantly changing who we are.  What we need to remember though, is that God chose our spouse for us.  He knew who we were when we got married.  He knew who we would be today.  And he knows who we will be tomorrow.  He chose us to walk this journey together.  The same advice holds true for both husbands and wives.  It is inevitable that both of you will change.  Trust God’s plan for your marriage, and learn to love every new and unexpected thing about your spouse.  Take the time to appreciate the way they have changed over time as a result of life’s challenges and see the wonderment and beauty beneath the burns and scars.

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That is probably one of the most real and best descriptions of marriage that I have ever heard!

What do you feel is a threat to a woman’s faithfulness in her home?

We live in a world of pinterest, facebook, instagram, twitter, and blogs.  There has never more been a time where we’ve had the whole world taking an inside look into our personal lives and homes, or where we’ve been looking into everyone else’s lives.  But how much of what we perceive is accurate?  We try to appear outwardly as being the most amazing mothers and wives in every possible way.  We strive to manage how others view us instead of how God views us, and we constantly struggle with identifying who we are in comparison to others.  We feel judged and cut down by other women we are surrounded with instead of feeling encouraged by them.  We feel we need to live up to an imaginary expectation so we can be accepted by them.  We need to stop worrying about what we look like to others and start focusing on what we look like to our heavenly Father.  Psalm 17:15 says “As for me, I will behold thy face in righteousness: I shall be satisfied, when I awake, with thy likeness.”

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What’s next for you?

I love gourmet cooking and I’m working on a path and business adventure to nurture that passion and share it with others.  For the most part I try to take one day at a time.  As much of a planner as I am, God has always had a different plan for me than what I’ve envisioned.  I’m planning to continue my teaching, volunteering, and speaking, and sitting back and seeing what the Lord has in store for me next.

Sarah, thank you for sharing your life and family with us. I needed to be reminded that God cares about every detail of our lives and that we are not alone when we have to make decisions. God calls us to draw near to him as he works his purposes through us. "In their hearts humans plan their course, but the Lord establishes their steps." - Proverbs 16:9 Wouldn't that passage be great painted up the stairs at home? What a joy it must be for your family to make  differences in others' lives together! Continued blessings to you as you bless others in Jesus!

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