Words of Faith, Struggle, and Joy From a Mom of a Special Needs Child

Laura King is not only vibrant, thoughtful, and passionately devoted to her faith (and to cycling!), but she’s also the mom of two adult children, one of whom has special needs. Over the years, I’ve heard her share her experiences of mothering her daughter, Megan, who is now 21 years old.

I recently asked her if she’d be willing to share any of her wisdom and experiences in hopes that a mother in need of support might be able to receive this download of her wisdom through reading her story. And she agreed! Here’s what she had to say:

On discovering that her daughter had special needs:

RCG: What was it like when you found you had a special needs child?

Laura: Truly, it was devastating. I remember that day oh so well. Years ago, I was at a family gathering, and a member of my family mentioned that my daughter seemed to have developmental delays. I remember panicking. Then, I shared my feelings with my husband, Robert, and he said, “Who cares? We’re not going to love this child any less.”

That moment of recognition marked the start of a challenging journey. We noticed that she had delays but didn’t know the extent of her disabilities until her behavior changed when she turned three. At that moment, my life turned upside down.

I couldn’t do anything. My time with my other child and time spent with other moms were dramatically affected. My daughter’s behavior became extremely difficult to manage.

I felt like I was living in a parallel plane alongside the rest of the world. It was us – on an island – and the rest of the world was somewhere over there.

One of our biggest challenges was that Megan had an unseen disability. She was an adorable child and looked completely normal.

Interestingly, it wasn’t until she turned 12 that we received a diagnosis. After many visits with specialists, we discovered through genetic testing that she had Smith Magenis Syndrome, an extremely rare condition. At the time, there were only 60 cases worldwide.

RCG: Wow – that must have been overwhelming.

Feeling isolated as the mom of a special needs child:

RCG: So, let’s go back to your three-year-old daughter. What happened after her behavior became so difficult to manage?

Laura: Life became harder and harder for us because we even felt judged, even by our families.

The first thing that comes to mind is my grandparents. I could tell that my grandmother thought we were terrible parents, and we felt judged. This was hard for me because I enjoyed a close relationship with my family while growing up, particularly with my grandmother.

It was confusing for everyone because Megan could talk and was so adorable. Yet, she would have violent outbursts that were interpreted as a misbehaving child. The judgment we felt from people we loved became hard to be around, so we moved two states away so that we could start a new life.

On finding her purpose along the way:

Laura: Megan has been difficult with me throughout time, yet always seemed to easily obey my husband. When she was younger, I remember thinking that Robert never even saw the super tricky hard side of her behavior.

So at times, I struggled with my purpose. I thought to myself, “If I can go away on a girls’ trip and Megan behaves so well with Robert, maybe I should go away?” I wondered, “What is my purpose in living?”

But then I learned that I was the person on the front lines every day. I recognized that it would be someone else if it were not me.

RCG: What kept you going through the most challenging times?

Laura: It was faith every day. It was changing the way I looked at life. Even though the hard was more significant than those tidbits of good, the moments of joy became so real and overwhelming that they made the “daily hard” work of a mom with a special needs child worth it.

The joys are enormous!

RCG: Tell me more about those moments of joy.

Laura: The crazy thing is that those big joys are over simple things. For instance, several years ago, Robert and Megan went to a Daddy-Daughter dance. Here’s what I had to say that day:

“This girl who came into our lives rocked our world and forever changed our family…will never go to prom or homecoming…BUT she has a Dad who loves her and treats her like a princess. Today, Robert took her dress shopping, came home and did her hair, and then they were off to a Daddy-Daughter dance. The excitement and joy on her face melted my heart. In these moments, the pain and hardship of daily life melt away, and I stretch my hands to the heavens and say, “Thank you for choosing us to be her parents, where nothing is taken for granted.” In turn, through the gift of Megan, we have been given a new lens through which we view life. Simple pleasures/simple JOYS!!❤

One year later, something unique happened. I have a friend that has a special needs son, and he asked Megan to attend prom with him! Here’s what I said:

“So this just happened…prom 2018 with Sammy! One year ago, I posted about Megan’s special date with her Dad for the daddy-daughter dance. In that post (and posts don’t happen very often 😉 I mentioned how special that dance was because Megan would never go to Prom. Well, God certainly had a different plan. We expect these memories with our typical children and often mourn the milestones missed with our special needs children…..However…when we have the privilege of experiencing a night like tonight, the JOY is overwhelming, and you can’t help but stretch your hands to the heavens and say, “Thank you, God, for choosing me, for equipping me, and for the privilege, it is to be a special needs parent”! All the hardship is washed away instantly and replaced with a heart of gratitude.”

RCG: It’s a huge blessing!

Laura: I don’t wish away the hard. You are so changed from the inside out. For instance, I can’t even imagine the person I would be without a special needs child!  I recognize our life is beautiful – the way it is.

Struggling with fears about the future:

Laura: Yet at the same time, grief explodes every time you come to a crossroads. I worry that she doesn’t have a support system of friends and doesn’t live a fully balanced life. Then, I start thinking about how she’ll never be a bride and never have children. I never know when the suffering will set in.

RCG:  It must be hard to think about. How do you cope?

Laura: I recognize that I can’t control the circumstances, but I can control my hopes, joy, and perspective. One of the hardest things, now that I’m in my 50s is the thought of who will care for Megan?

Megan requires daily work like bathing, feeding, etc. It’s not different than when you have a toddler and have to pack bags, snacks, etc. I’m still in that phase. I have to be so careful not to desire what I don’t have and compare myself to the rest of the world.

The critical importance of faith as a mom of a special needs child:

RCG: Tell me about how your faith has supported you.

Laura: I know that God is good, and he will not give me anything more than I can handle. I am a better person because of the trials I’ve gone through.

A favorite passage from James 1 in the bible states, “Consider it nothing but joy, my brothers and sisters, whenever you fall into various trials. Be assured that the testing of your faith (through experience) produces endurance (leading to spiritual maturity and inner peace).”

We are so changed by the trials we’ve been given, and it’s all become such a God gift.

I recognize that our suffering is used for the greater good. Being around Megan has affected so many other people’s lives positively. Her life has been a bright light in this world.

I’ve also learned that you make the best out of what you have and create beauty.

Final thoughts and insights from a mom of a special needs child:

RCG: I wonder what you would have to say to a young mother who is just discovering that her child has special needs. What advice would you have to give?

Laura: For one, you’ll learn to see life through a new lens. That can be in the form of milestones that you may otherwise take for granted. My child didn’t talk until she was one and didn’t walk until she was two. She missed the major milestones, but we learned to rejoice differently while watching her grow.

Also, being the mom of a special needs child has encouraged me to choose to see the good. I have to choose every day to see the good and not focus on the negative.

Another is that I can’t compare my daughter and myself to others. While raising kids, it’s so easy to compare who’s walking, talking, and doing this or that milestone. But you can’t do that. So it truly changes your entire perspective on life because you can’t see through the same lens anymore. Your heart opens with empathy. This has grown me in ways that I couldn’t have imagined.

RCG: Do you have any other advice you’d offer to a mom of a special needs child?

Laura: Seek community! The supportive, loving community I’ve found in Washington has gotten me through. You may feel alone, but you’re not. The community you discover will carry you through hard times.

RCG: Thank you so much for sharing yourself with the Rose Colored Glasses community and me. You’re a heroic mom.

Laura: You’re so welcome. Thank you for having me.

 

For more reading on this topic, learn about how to cultivate self-compassion as a mom here.

Also, see the unexpected joy of being a single mom here.

 

 

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