***This was originally posted in the LOVE OF DIXIE MAGAZINE…
The car reeked of chlorine. I sat in the parking lot, my daughter still in her swimming suit, basking in the significant progress she made in just a few days of aqua therapy.
We flew nearly 3,000 miles to get help. The speech therapist we sought out then connected us with an aqua-therapist who worked her magic in the pool. Ryan learned how to control her airflow enough to blow a whistle. She began to learn to swim. It was incredible.
There, in a rental car warm from the summer sun, the most overwhelming grief washed over me. Tears were uncontrollable as I sobbed and took deep breaths. Pulling out of the parking lot—leaving behind these women who helped my daughter so much—I learned an incredible truth: We only grieve what we are grateful for.
I was profoundly grateful for their help, and I was desperately sad to go home and face the challenges alone. Again.
Several months later, my daughter and I drove hundreds of miles to a week-long swimming clinic for kids with special needs. I watched more gifted therapists, in the pool, with more precious kids.
The first day a beautiful, curly-haired, autistic preschooler screamed and cried the entire lesson. The instructor was unphased and upbeat. The little girl’s Daddy was steady and confident, but her Mom had to walk around the corner and collect herself.
Sometimes you just need to catch your breath.
The second day, the precious cherub only cried for 20 minutes.
The final day that brave little champion jumped in the water, laughing and splashing. This time it was her Mom who sobbed the whole way through, tears of joy and enormous pride staining her cheeks. It is difficult, sometimes, to put into words what an incredible privilege parenting special needs kids is.
They are warriors who muster tremendous courage to do things that come easily to most people. They add color and texture to the ordinary. However, this parenting road is not without costs. Those costs, unfortunately, can be relationships.
My college-student daughter shared with me the experience of talking about her sister with her friends. As she explains what our life is like, they stare pityingly, with wide-eyes and jaws open. “She’s actually one of the happiest people I know,” she assures them.
People who are not in the throws of dealing with special needs kids often don’t know what to do or how to think about it. Nearly a decade and a half into this journey, I have ideas about what might be helpful to parents who share a similar story to ours. If you have friends whose kids are unique, perhaps this will give you something to consider.
Our boundaries are often tighter than yours. My daughter almost always needs to be in my eyesight if we are not at home. While wandering and exploring is joyful and necessary to typically developing kids, it is dangerous for mine.
We have been at family events where everyone wanted to go for a walk down long winding, unstable trails, unaware of what that would be like for Ryan. We are not party poopers or lazy, but some things are not realistic for us. There are homes with trampolines or tree houses that we end up avoiding because the price of dealing with them makes the experience overly draining. Physical coordination is not something we can take for granted.
We would love someone to stay in the kiddie pool with us. For over a decade we had season passes to the water park, as did most of our friends.
For the first few years it was delightful because we were all in the same season. We had toddlers and traded off helping; one mom at the top of the slide, one mom at the bottom. Our chubby babies laughed and splashed, sliding down slides, getting all the vitamin D one could want.
But then the other kids grew and developed. While they were bounding around from adventure to adventure, their moms were laying out getting tan. Meanwhile, my daughter (who had finally learned to walk) and I were still in the pool with the little people. I would get her situated at the top of the slide and tell her to wait, then run down to the bottom to catch her.
I entered a season where it was far lonelier to go to the water park with friends than to go by ourselves, so I stopped going with friends. I understand that moms need a break; hanging out and chatting is soul-filling, but I would have loved someone willing to stay in the kiddie pool with us.
Sometimes your kids should experience things that are not fair. Once my daughter and I were at the park, swinging. She was safely tucked in one of the toddler swings, steadily flowing back and forth. She was having a blast. She swung for a long time.
Another child wanted the swing. The Mom said a little too loudly, with a tone of irritation, “I guess you just have to wait until they are willing to share.”
The fact of the matter is that there are many things kids with special needs cannot do, or participate in. Because of that, when something works and is loved we may let them continue beyond what the watching world thinks is their “fair share.” And we may not apologize for it.
Our kids are a gift. We are doing the world a favor for raising these precious people. They are funny. They see beauty in unique places. They give the gift of forcing us to slow down and breathe deeply. They simplify a tightly wound world.
My daughter is a joy spreader. When she was an infant a seasoned specialist looked at her, smiled and said, “She really is remarkably sweet, isn’t she?”
Yes, she is. She can’t talk. She sometimes learns after being introduced to things ten thousand times. It’s not a fast process, but she is wise in her way. She loved her grandmother with Alzheimer’s with so much ease. Her expectations of people are inspiringly low.
My world is infinitely more vibrant because of our journey, and yours will be too if you have friends like my precious little peanut.
When she was just two days old we were getting ready to check out of the hospital, totally unaware of what the future held. Our beloved pediatrician came to examine her. After many strained minutes looking and testing, his face softened. He put his hand on my leg and said in a gentle tone, “I am so, so sorry, but I would put your baby in the category of there’s something not right, but I don’t know what it is.”
Stunned, I took a deep breath and replied, “On the wall above her crib I painted Genesis 1:31, ‘And God looked at all He had made, and indeed it was very good.’ I guess it’s time for me to figure out if I really believe it.”
With that, our journey began. I got the joy of figuring out those were not just words painted on a wall. I don’t only believe, I know. God created my daughter and, indeed, she is very good.