It was a privilege to grow up with a sister with special needs. Rachel had an uncomplicated birth, was a beautiful baby, and appeared healthy. Around her first birthday, it became apparent that something wasn’t right. When Rachel should have been developing and learning to walk and talk, it wasn’t happening. No one knew why at the time, but my parents immersed her in Easter Seals and other early intervention programs to try to help her. From my perspective, life went on fairly normally.

After many years, it became clear that Rachel fit into a new diagnosis called Rett Syndrome (rettsyndrome.org). The syndrome was identified by a French physician who had multiple female patients with similar features. In 1999, the gene causing Rett Syndrome was discovered, confirming that this affects girls primarily. These young girls seem to develop to a point and then stop developing or even regress. Some key features are the loss of normal hand use, loss of spoken language, gait disturbances, loss of muscle tone, seizures, and abnormal hand movements such as hand wringing or clapping.

I grew up in a Christian home with three other sisters. I was the second in line, and Rachel was the youngest of us four. My dad was a schoolteacher and my mom a nurse, and they worked hard.

Rachel was very dear to all of us. She was cute, happy, laughed a lot, and was generally enjoyable to have around. However, there was a lot of work. She required total care from birth until her death at age 36. There were 36 years of feeding, cleaning, and diapers. Normal events like going to church, preparing for school, and getaways and vacations required planning and extra preparation. My parents rarely complained.

I learned a great deal from growing up with Rachel and even more from my parents’ example. One lesson I learned is simply that God gives us what we are supposed to have. I remember my parents reflecting on others’ experiences with comments like, “That would be really hard.” Likely, many from outside our family were thinking that our life experience was really hard! My parents might have thought that, but didn’t act like it. Rachel was part of our family and went everywhere we went. From church and school to camping and the beach, her disability was never an excuse to not do everything we would have done without her.

There was a time when my parents considered putting Rachel in a care facility. I remember them talking through this and deciding to keep Rachel with them. It was never verbalized, “Why us?” I grew up thinking that everyone had something that was difficult, and we were kind of fortunate that we got Rachel.

I learned valuable lessons about how blessed we are. My mom worked as a nurse when I was in high school and left our house every morning before Rachel’s bus came. I would help finish the morning routine and prepare Rachel to wheel out to her bus. She rode a special bus, and all the passengers had special needs. It was a happy little bus. Kids were smiling, the bus driver was friendly, and kids would wave as they pulled away. What a contrast to my public school, where kids generally didn’t want to be there!

Even as an adult with my own kids, I didn’t really stress about when my kids walked or were potty trained. I was just thankful that it happened! My childhood has been a constant reminder in life that any successes or abilities that I or my children have are a gift from God. I am thankful to Him and cannot claim any credit.

I was able to see more of the struggles my parents faced as Rachel got older, and I experienced some myself. My husband and I moved into the same neighborhood for a variety of reasons, one being to help with Rachel. There was a lot of back and forth, where my folks helped with our kids and we took Rachel occasionally so they could have a break. This was a huge blessing for our three boys as they grew up to know Rachel. We still share Rachel stories.

Caring for her as an adult while having small children was a lot of work. I had to plan ahead for my own work schedule, plan for who would be home to get her off the bus, and navigate the “bus challenges” of getting her to the right home. However, in those busy weeks, I often felt a greater sense of peace. Having someone around who is completely helpless and dependent forced me to slow down and just think. Rachel could only eat so fast. I couldn’t rush her at many things. While taking care of her kept me busy, it provided me opportunity to reflect on what is important. Those weeks weren’t about doing anything extra. They were about caring for Rachel. It was a good reminder of how dependent and helpless we all are and how often we forget that all our needs are provided for as well (1 Cor. 4:7; Jas. 1:17).

One of Rachel’s greatest loves in life was music. Truly, she lived for music. She loved the music of Mister Rogers and listening to The Sound of Music. But most of all, she loved the Psalms. She would smile and rock at church and radiated joy from hearing them sung. Her favorite was Psalm 23, and she would light up if you even just spoke the words. Music was a big part of my life growing up, likely more so due to Rachel’s influence.

The biggest lesson I learned from knowing Rachel was the reminder to trust God. When she was getting older, along with my parents, my sisters and I would often talk about next steps for Rachel. While my parents planned ahead for finances and care, my dad would often say, “God has provided for Rachel and us up till now. There is no reason to doubt that He will continue.” I find myself thinking about that quote a lot in my adult life. There is no reason to doubt that God will continue caring for us and providing for all our needs. What a blessing of this promise and assurance!

God did provide for Rachel. As she got older, she wasn’t as happy as when she was younger. She still loved music, but we wondered if she didn’t have pain or her own worries and anxieties. She had seizures periodically throughout life and developed trouble swallowing, requiring a feeding tube. She was harder to care for, and my parents weren’t as young either. We were just starting to talk about additional help from myself or other caregivers, but God intervened and took her fairly quickly after she aspirated during a seizure.

This was hard. She passed in the hospital with my parents present, singing to her. We miss her to this day and long to see her in heaven where she can talk with us and we can all sing together. We imagine Rachel flying with the angels, in the presence of the Lord, singing His psalms.

I think of Paul’s words in 2 Corinthians 12:9–10: “My grace is sufficient for you, for power is perfected in weakness. Most gladly, therefore, I will rather boast about my weaknesses, that the power of Christ might dwell in me. Therefore, I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.”