My daughter has been counting down the days until her birthday since it was a month away on March 9. Yesterday, she “reminded” me that her birthday was only 16 days away. Luckily for me, her birthday party won't happen until April 21, so I've still got some time to prepare for that event.
I'm more than a little bit disappointed in myself that I haven't gotten further along in my health goals. Considering how hard I've been working on my health, I would have liked to have lost more weight (a lot more weight), gained more mobility, and reached better endurance by now. I feel a lot of apprehension about managing all of the tasks for Sophie’s party and being on my feet, being social, and inevitably feeling embarrassed that every aspect of my life feels so hard at the moment.
I worry about the logistics, the finances, and even just embarrassing Sophie. That's not to say there aren't silver linings to all of our current challenges. My daughter is probably a lot more empathetic and understanding of disabilities and differences in appearances than most other kids her age. Still, ten is such a big year for many kids, and I can't help but worry about where we're at—and where I'm at right now.
Ten happens to be a meaningful number for me as well, because it's reflects back upon a significant stage in my lipedema journey. My lipedema progressed dramatically after my pregnancy with Sophie, which was challenging enough as a high-risk pregnancy from my PCOS and severe pre-eclampsia.
My feet swelled up to the point where I could only wear slippers outside on many days, and in hindsight, I suppose that's when my lymphatic damage became more severe. My weight began climbing up, particularly with breastfeeding and our first few years in Tennessee. My body felt like it was blowing up in ways I couldn't explain, but I didn't know about all of the treatments I needed back then to help keep the progression of disease at bay.
It's ironic. Knowing what I know now about how some of us lipedema patients get so much worse from pregnancy, how much harder it is to manage our disease without local support, and how challenging it is to be a single mother with such advanced lipo-lymphedema—Sophie really only could have been born in a short window of time ten years ago. It had to happen the way it happened.
If I'd known about my lipedema, and how much worse my disease would get, it's hard to imagine any scenario where I would have met Sophia's dad or ever chosen unplanned parenthood.
Had I known more, I would have been on a completely different path—doing everything I could to stay active in Minnesota and avoid any progression of disease. I don't think I would have been concerned with romantic relationships at all.
I didn't know what I needed back then. I didn't know that I wasn't “just” fat with unusually large legs. It affected how I treated myself, and how I let others treat me. Ten years ago, I was frankly so frightened, depressed, and traumatized from life—and about becoming a single mother—that I never could have guessed what might be in store for us today.
That's the irony. Had I known more about lipedema back then, Sophie wouldn't even exist. I never would have known the joy of being her mom.
Sophie knows that I wouldn't trade her for the world. Even though I now know that the pregnancy negatively impacted my health and made my lipedema so much worse, I wouldn't want to live in a world without her. Even though I was so scared and uncertain about choosing motherhood that I had no idea if I could handle it mentally or emotionally.
Here we are, ten years later, and I can say without question that Sophia is the very best part of me. She is worth all of the lipedema pain and progression, and all of the awfulness of this disease that I wouldn't wish upon my worst enemy. I would go through all of it again, knowing how wonderful she is, and despite the difficulty of single parenting with a disability today.
Sophie really is the most cheerful and fun kid I've ever known. She's sweet and kind in ways I never knew 9 or 10-year-olds to be. Even when I'm feeling so down on myself or I'm feeling like a failure, being her mom keeps me fighting to get stronger and healthier.
She deserves it.
I worry so much. I worry about losing more of my mobility, and I worry about dying too soon. I worry about what would happen to Sophie because she can't count on her dad. I worry what's going to happen this year if I don't improve our financial situation ASAP—I worry about everything we could lose, like our apartment. Yet despite all of these worries, I keep a certain amount of calmness in my heart simply because I know she's worth the fight.
Without Sophie, I think I would have given up a long time ago. Without Sophie, I never would have had a truly positive experience with family.
Things are far from perfect. I truly wish our lives were at least ten times better right now. But being her mom means I am determined to do better and finally get my disease to a manageable place.
That's why I wake up every day and choose to push myself to do hard things. I push myself to enjoy doing some of the hard things. It feels good to get better, even if the incremental improvements are very small for now.
It's Monday. Mondays are gym days for me. Sophie’s excited to be turning ten partly because that means she can start going to the Y with me to use the cardio machines, too. This year for her birthday, she's hoping to get a fitness tracker, a cat carrier backpack, and a couple of Disney gift cards that she can save for a future trip.
Even though things are very tough right now, she still has big dreams, like traveling and walking fast again with me. I love that she still has those dreams, and I plan to keep working for those same goals.
I want to walk quickly again with her too. I want to travel and help put more hope out into the world that we and our children can do hard things. We can break cycles of generational trauma and poverty.
We can build better lives and a better, kinder world.
Shannon, I want you to realize and appreciate that all of Sophie’s special traits—kindness, honesty, cheerfulness, creativity, empathy (the list could go on and on)—are hers because of you. You have focused on helping her to become the lovable little person she is today, and that’s something to celebrate. 🎉