God Shines through it All

Lisa Rhodes grew up on a farm south of Waco, Neb.

“Our imaginations could flow on the farm,” Rhodes said. “There were benefits and drawbacks to farm life, but you could always find something to do.”?

“Like tying twine to our bikes and riding around on them like like they were horses.?And, I didn’t even break an arm,” she said laughing about just one example of finding, “something to do.”

There was also the joy of having grandparents nearby and the reality that life is short and has struggles too, “Grandpa had a stroke and needed someone to take care of him at home.?I helped care for him and that got me thinking I could maybe be a physical therapy assistant someday.”??

The week after graduating high school, Rhodes was off to Norfolk, Neb. to take a summer session for the start of her two-year physical therapy assistant program that she soared through – graduating when she was just 19.?

During her college career, her grandpa died as well.?She said, “It was so hard to get that news.”

Loss of loved ones is part of life, but that doesn’t mean it’s easy.?While she questioned the loss of her uncle when she was young, her grandparents later on in life, and a cousin and nephew – she kept her faith.?

“God is always there,” she said without a shadow of a doubt.?

A bright spot along her journey, was meeting the man who would be her future husband, “Wes’s cousin played on our softball team.”

“Unknowingly, I actually discovered I knew Wes’s dad before I knew him.?Back when I worked at Gas and Shop in York, his dad used to come in and get a mug of pop. When I saw his dad the first time, I made that connection,” she joked, looking back.?“It was a good job.?Mom was a manager for Gas and Shop though, so there was no way to get out of work with any good excuses.?Mom worked hard.?I remember her leaving at 5:30 a.m. to do her manager thing and dad would put oatmeal on the back window to cool on cold mornings.?He helped get three kids ready to go.?I can still remember the sound of the alarm clock.”?

Lisa married Wes in 2007.?Along with the blessings of marriage, came the sorrowing loss of four children to miscarriages, “That has been a deep, deep pit.?You’re just wondering what’s going on.?One time I had 27 vials of blood taken.?A lot of testing and a lot of unknowns.?We had no idea what was in store.”

The couple was so excited when they found out baby Layne was on the way, “We went in to do an ultrasound and I should have been seven and a half weeks, but it just showed five and a half weeks.?Five and a half weeks was when I always miscarried.?At that point, my hope was really out the window.?I really thought I was going to lose another baby.?But the doctor said, ‘Go home and keep taking your medications.’?Then at my 12-week ultrasound we saw the heartbeat and it became so real to us.?It was really happening.”

“We said my grandma was in Heaven telling God, ‘Say, I’ve got a job for you.’?She always had a special way of asking for jobs to be done and we would do them.?In this case, we knew she had helped us out,” Rhodes said smiling.?

Little Layne was baptized a year later, on the day her grandmother had died, to honor her memory.?He was also born a week before Wes’s birthday.?In 2013, they rejoiced at the birth of their daughter, Olivia, who was born a week before Lisa’s birthday.?Then in 2015, Wyatt was born, then Maverick in 2020, “We will never forget as that was the first day COVID was hitting everywhere.?Then in 2021, Claire was born.”?

Wes and Lisa couldn’t be more grateful for their beautiful family.?With all the milestones of life, they also didn’t expect they would also find out two of their children, Layne, and Maverick, would be facing a diagnosis of Duchenne Muscular Dystrophy.?

“We started noticing that Layne had a hard time getting up and down.?But we didn’t have any knowledge of any genetic history of Duchenne in our family,” Rhodes explained.?“I had some thoughts because of my physical assistant training, but you tuck those thoughts into the back of your mind because his delays were so gradual.”

“I remember on a warmer day, we were out playing on a playground with some other kids and one of the kids said, ‘I want calves like that kid,’” she recalled. “Part of Duchenne is pseudohypertrophy (enlarged muscles).?That was another ‘red flag.’”

Then at a doctor’s appointment one day, Rhodes was filling out a form.?One of the questions was, “Is your child able to climb stairs step after step?”

Eventually, Rhodes and her husband had to face the reality, “Layne was having difficulty getting up in the doctor’s office, we waited and waited.?The physical therapist asked if he had that trouble at home.?I told her, ‘I know what you’re thinking, and I think the same thing.’ From my medical history knowledge, I knew at that point we needed to get a blood test, a CK (creatine kinase).?It’s a test for an enzyme in the bloodstream that builds up after muscle breakdown has occurred.?His CK came back over 20,000.”

Rhodes said Duchenne shows up in mostly boys, however girls can get the disease as well.?They eventually found out Lisa is the carrier, “If I had been a boy, I would have had Duchenne.?I think of how different things would have been for my parents and family.”?

Wes and Lisa have made sure they continue to meet the needs of their two boys with Duchenne.?They moved from their two-story dream house into a ranch style home, “We moved from the house Wes grew up in even though we absolutely loved it.?We had to because we knew that stairs would be an issue.?We moved into the ranch-style house my great grandparents built in another town.?The home is like waking up and getting a big hug from our ancestors.”?

There are also a lot of hugs being given between members of their family.?While the children will develop differently, the Rhodes are doing all they can to ensure Maverick and Layne have all they need to remain as independent as possible.?

They saved up and paid for their van in cash and they really hope to get an automatic lift.?Layne’s wheelchair alone is $66,000.?There is also the challenge of insurance that everyone has to face, “You think you know everything about insurance and then you realize you don’t really understand any of it.?We are grateful for the treatments we do have access to.?We also have had great home health nurses.?We have to take the boys out of school for treatments and we try and educate the other students in their classes about Duchenne.”

It's heartbreaking though and you can see the pain and pride Rhodes has in her eyes for her children, “It’s hard seeing Layne (whose Duchenne is more advanced than his brother’s at this point) watching his friends get stronger and stronger and he is starting to know his body is starting to fail him.?Of course, that is going to make him upset sometimes.?He didn’t realize until recently how it will affect his arms. It’s hard shielding him from the realities of the disease so he can be happy, but also not wanting to lie to him.?It’s a balance.”

They are so appreciative that the MOPS (Mothers of Preschoolers) group that Rhodes belongs to set up a fundraiser for a scooter for them a few years ago when Layne was in kindergarten, “The MOPS group has been the hands and feet of Jesus for us.?We appreciate all the help we have received from all our family and friends.?This is going to be a chronic situation for our family, and we appreciate the support.?We know we’re not the only family with needs.”

Wes continues to find employment to help his family.?He really enjoys working in the field of agriculture and stays very active serving on local, volunteer fire departments.?Lisa enjoys serving as the church secretary for St. John’s.?She also finds volunteer things to do, such as taking the St. Paul kids to band on Wednesdays, “It’s another way we can use our big van to do something for someone else.?I enjoy it.?It keeps me going and I love that the students are in band and enjoy music.?I also appreciate the role at church.?I know I could quit, and anxiety or stress could creep in, but these roles help me keep going and give me another purpose in life. I appreciate them.”

“At first, we thought the miscarriages were going to be our hard thing,” Rhodes said. “Then came Duchenne.?But all of our lives have hard things to face.?None of us are assigned to one thing.?It could be a cancer diagnosis, or the loss of a loved one.?Through it all, God shines through.?There are countless ways God has blessed us and continues to do so.?We’re grateful.”?

The Rhodes family did not ask me to write this Hope Story for them.?I asked Lisa, because I am inspired by her faith and the way she doesn’t give up.?If you feel so moved, please follow Lisa on Facebook, and be inspired by the faith and realness she brings to her journey each day.?Maybe you will be moved to share a gift of love with them in the form you choose to share.?We all have so much to share.?Sending love this Christmas season to everyone. I know I have a lot of blessings to celebrate.?Friends with faith like Lisa’s remind me each day.?Thank you Lisa for who you are.?

Follow Lisa at:?www.facebook.com/lisa.d.rhodes