When I was expecting Lydia, I was looking for something. Dan had just finished grad school & was chasing his dream career. I’ve always been a driven person, & a big part of my heart hungered for a similar journey for myself. It’s hard to be a young mom, move around the country multiple times, & pursue personal interests… I was doing my best trying to keep up with writing and working hard on my photography—and making big strides! But it felt hollow, because despite having skills, they really had nowhere to GO. So at one point, I started praying: “God, please give me a story. I’ve got these skills and nothing to do with them. Please show me how I’m supposed to USE them.”
Be careful what you ask for.
Along comes Lydia.
First thing’s first: the world stops, then flips over, & everything is chaos. Priorities, paradigms: inside out & reorganized. Her medical battles were all-consuming. I found writing was the only emotional relief-valve I had. Often times I couldn’t cry UNTIL I wrote about an experience; THEN I could feel it. (Now I worry that I probably should but don’t want to write because I’ll KEEP feeling it—the ironies of trauma).
All this time I was learning; combing the web & viewing others’ stories about life w/ DS. And I thought, “Maybe that could be us? Maybe we could be someone’s great inspiration? An incredible redemption story? Maybe this is what I’m made for?!”
Everyone wants a shiny destiny.
Lydia’s birthday is truthfully one of the hardest days of the year for me. Not only does it mark a day of intense trauma, but it marks traditional milestones. And you don’t realize how many or what emotional impact they have until you have a child that breaks the mold.
The first couple yrs of her life I spent thinking things like. “Maybe next yr she’ll eat her birthday cake…” “Maybe next yr she’ll talk…” “Maybe next yr…” It wasn’t until she turned 5 that I stopped w/ the maybe’s & made myself accept what IS. When birthdays became not about what SHOULD be, but about just BEING. When we stopped celebrating all that it means to be 2 or 4 or 6, and started simply celebrating LYDIA. Can I tell you what that did to my heart? What that did to the day? It no longer mattered if she ate cake or even if we HAD cake. We ate what Lydia would enjoy. It no longer mattered if presents were wrapped or if it took days for her to accept her toys. We simply learned to manifest unselfish love, all day, for the girl who changed our lives.
It has taken me awhile to apply the lesson to the other 364 days of the year. It has taken me even longer to accept that the lesson applies not only to Lydia, but to myself.
Because friends, I don’t Influencer well. And neither does Lydia.
Some kids with DS do amazing with crowds of people and posing for photographs and socializing. It’s a real challenge for my girl. In spite of the fact that her mom is a photographer.
Some kids with DS graduate from HS and go on to have careers and become motivational speakers. I will NEVER place limits on my girl and we will keep using and fighting for every educational tool we can find for her entire life—but so far, Lydia is considered non-verbal and has some severe learning disabilities & challenges. She may, or may not, go to college.
My child might spend a lot of time in the hospital and will have innumerable surgeries. She has to, to stay alive. As soon as that pacemaker went in, it was the deal to get to keep her.
3) One thing I have had to come to terms with is that no two children, even children with DS are alike. And I cannot FORCE Lydia to “succeed” by the world’s standards, whether that be academically or socially or likes on Instagram or some crazy idea of a redemption story.
AND I DON’T HAVE TO. She already IS everything she has ever needed to be. Ever.
And so am I.
It doesn’t have to be shiny.
No secret number of likes or followers has to validate worth.
There is no such thing as earning redemption.
The goodness is already there.
The Love is already earned.
We just have to celebrate it.