I couldn’t help myself. I watched from beneath my sunglasses. I watched intently as I saw grace in action. I felt inspired instantly. And then I just decided. I’m gonna go ask. I’ve never ever done that before, walked up to strangers and asked.

I walked over to the side of the pool to a woman holding one tube in a lazy river. A tube. With a foam cooler in it. With a medical machine of some sort in it. With a medical hose of some sort coming out of the medical machine. And the hose. Connecting to a face mask. On a child. In a Hawaiian floral floaty contraption.

I couldn’t help it. I felt nudged to say something. You know what I mean? So I did.

“This is going to sound so weird but I just feel I need to tell you that you are so cool. Can I maybe take your picture?”

I know. It sounds so weird, right? But guess what? She said yes. And that she wasn’t mom. Not to this child anyway. But he was her daughter’s child. I told her I’d go grab my phone from my locker.

…

I waited for them to come back around. I know. Still weird, right? But I felt like this mama must be a warrior. A badass. A rock star. I felt like I had to meet her. And as they came around the curve, I saw mama. And another floral floaty contraption. So all told, they had quite the caravan. Two floral floaties. One big tube. Two children — one boy, one girl. Two adults — one mom, one grandma. One cooler with a medical contraption and a hose.

Wow. This. Is. So. Freaking. IMPRESSIVE. I asked her if I could take her picture. If I could share it. She said, “Yeah. I can text you what we have…” And I said, “Well. YES. That would be awesome.” She gave me her number. I texted her the photo. And I said, “By the way. You are amazing. And not like, amazing, like in a patronizing way. Like you are a badass.”

…

At the end of the day, I had a text from her. And my heart. I just knew. I was meant to meet her that day. Do you ever feel that?

Thanks so much for the mom love.

We have an older son, Kaleb, who is 9 and perfectly healthy. Ella, our daughter, was diagnosed with SMA (Spinal Muscular Atrophy) three days after her first birthday. We were told her disease was rare and terminal with no treatments or cures. SMA causes severe muscle weakness affecting movement, eating and breathing. They told us she would likely pass away by her 2nd birthday.

Not my baby!!! We didn’t settle for that. And luckily she didn’t either. We did all we could to get info and realized we could help her with good respiratory care and diet.

She wears a bipap at night while she sleeps and has a feeding tube. She is about to start second grade. She plays baseball and does dance class.

Although we knew that we had a 25% chance of our next pregnancy having the same disease, we also knew that we could handle whatever we were given. We found out when I was about five months pregnant with Grayson that he also had the disease. However, he is much more affected than his sister. He is a type one and Ella is a type two. He also has a feeding tube and has to wear a BiPAP but around the clock. He can come off of it for short periods. He cannot hold up his head like his sister….yet.

Mothers in different states and myself got together started an advocacy group and in May of 2016 we spoke before the FDA in Washington DC asking them to stop current drug trials and approve a medication to help our children. On December 23, 2016, Spinraza was approved!

Grayson has been receiving the drug since December and Ella began her treatment in February. They are both slowly regaining some strength. Grayson will be 4 next week! I am a maternal child nurse and it has been great to have my medical knowledge and be better equipped to care for them.

There is hardly anything I won’t do to help them experience what every other child can. Jet skiing, tubing, sledding, taking them down water slides. They’re just like any other children, just stuck in bodies that don’t want to work.

Am I tired? Hell yes. Is it worth it? Over and over again, yes.

Thank you again for the pat on the back. From time to time God speaks through others to let me know that He is pleased with my work 

Wow. WOW. People need to know her heart, I thought.

She sent other photos of her babies. And then she said,

And what made my today especially awesome is that I just had the idea for these pool floats last night. I stayed up late sewing them and hoping that they would work for the kids to be able to enjoy the pool a little bit easier. And they worked perfectly.

I have made many things over the years. When something doesn’t exist that I need, I try to make it.

I was in love with this strong, warrior woman’s creative soul and stick-to-it spirit. I found myself so proud to get to be in the hood of mothers with someone like her. Someone who gives mothers such a great name. I found myself in awe of this stranger and the true goodness that she is living out in her life. In the life she is giving her babies because she knows that every day is a bonus.

Her mother was the woman helping her that day. Her mother makes it possible for her to do so many things. This mother of two kiddos who need different things than a big percentage of the population has a great mother herself. And she has a tribe. She has people who support their family.

Of course she does. Strong attracts strength. 

The minute I saw the tubes, I was drawn to this family. I was truly so inspired by the idea that they were wielding an extra tube. With a cooler. I had no idea that the mother had crafted the floral tubes on her own. I had no idea that she was even more of a hot shot than my eyes had first noticed. But truly. She is an example of unconditional love. A mother’s heart walking outside her body in everything she does. A truly blessed life.

She didn’t want pity.

“I hope people see my blessings and don’t feel pity for us. We don’t need it. We’re not sad. I just hope that they will be inspired and hold their own kids a little tighter and be more grateful in general. We can all do better to realize how blessed we are.”

Oh… the goodness. 

Sweet mama. I didn’t pity you for a second. You made me believe you were the luckiest mama on the planet. In fact, you may very well be. How exceptional you are. And I don’t think you know what you’re doing. I don’t think you’re trying to impress anyone or win any mother of the year awards. But just by being you, you changed my day. You made me stop and be in awe. And you made me love the world a little more. 

…

I was so thankful for our interaction. I am so thankful that I went out of my comfort zone. That I was able to give this mama a high five. To tell her the world sees her rockin’ it. 

And of course I was insurmountably thankful for just another reminder of true goodness. Of the goodness that exists in real people. From real places.

Days can be hard. Weeks can feel painful. Periods of life can be trying. There is no denying that. But what was I reminded of, once again, in my summer of wearing the swimsuit? Jen and Kaleb and Ella and Grayson reminded me that even when it’s hard, even when the odds seem out of our favor. Even when the circumstances we find ourselves in seem different than what the world knows. Even when hard is our life’s work. Or our blessings take a different shape than another’s. We have a choice.

We can stop.

Or…

We can just keep swimming. 

Yes. Just Keep Swimming. And if it feels impossible, maybe we just need to sew our own raft. Maybe we need to be our own lifesaver. Maybe we just need to come up with a way that no one else is selling or offering or doing – something that works for us – and just. keep. swimming. And eventually, we will feel blessed beyond measure.

Whether your hard is like Jen’s — Spinal Muscular Atrophy — or if it’s something completely different, look to the angels around you for inspiration and just keep swimming.

I truly believe if you do, you might soon remember that you can relax, float, and just enjoy the ride.

 

Find more information about Spinal Muscular Atrophy here. And thank you, Jen, and her mom, for sharing your insanely kickass life with me. I hope other people will find inspiration from your spirit in the same way I did.