man in black long sleeved shirt and woman in black dress

Mama’s Day

When Hailey was first diagnosed, I was reaching at straws trying to find one that I could hold onto. So little information existed about Jordan’s Syndrome, but thankfully,  my extended global family was just a click away on a Facebook group. I requested to join the night that we received the news about her.

When I woke up the following morning,  my body felt like it was floating away from me. I was so lost and felt the furthest away from earth than I ever felt in my lifetime. But then I looked down at my phone, and there were  20 notifications in the Jordan’s Syndrome group openly and lovingly welcoming our family into theirs.

overhead group shot of Jordan's Guardian Angels
group shot of Jordan’s Guardian Angels

Mamas Unite

A fellow mama, and parent- research team liaison, embraced us with open arms and an open heart. She provided a welcome packet, so many kind words, and a shoulder to lean on. Unknowingly to her, she became one of the strongest mamas I have ever known.

I knew there was a long road ahead, but in less than 24 hours, we had some more direction from people who had already traveled and paved the way. 

When I spoke with one of the other mothers from Ohio, she lifted me up with so much positivity. She checked in on me and even answered all of my MANY questions. 

In three years from now, you will help some mama who feels all the things you’re feeling and remember so well, I was there too. I remember how much support I felt like I needed to keep my head above water.”

Kelly, Stacy.

When Stacy sent this message to me, it was so very difficult to look that far ahead into the future. How is this woman so strong? I still grieve from time to time and feel sad when I need to. When it feels right, I cry, and at times, a cathartic, ugly, tears streaming down my cheeks, snot running down my nostrils, full-on sobbing cry feels so freeing. 

 I find the time to have a hearty laugh with my family and friends. 

I think about what she said to me. There are days when it feels so heavy, so burdensome. But then, there are days when I find the strength so deep within me that Stacy warned me about. 

Stepping into a New Role

Another mom, Kathy, posted just a few months after I had joined the group about her gorgeous daughter, Maddie, who had been diagnosed with ppp2r5d, Jordan’s Syndrome. I felt an immediate connection with her, as I remembered the exact feeling she had when my baby girl was diagnosed. My fingers moved faster than my brain, and within minutes, I messaged her. Living across the world, in China, I instantly found another mother, who too, was me just a few months prior.

two baby girls with Jordan's Syndrome
Hailey and Maddie

But here I was, feeling moved by Stacy, and compelled to be a listening ear for someone else. 

Mamas Together

Every few days, we check in with each other, share updates about our girls, send pictures, and discuss the joys and worries we fear as parents.

I haven’t met these women in person (yet), but it is so evident that they have become friends and family for life.

So today, tomorrow, and every day following, I raise my glass to all the mamas supporting mama‘s in all of their walks of life.

Happy Mother’s day, Mamas.

2 thoughts on “Mama’s Day”

  1. You’ve got this mamma! I’ve already seen growth in you. You’re Hailey girl is so sweet and she’s changing the world!

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