When we become mothers, we dive headfirst into a world of love, responsibility, and, let’s be honest, exhaustion. For those of us raising children with Down syndrome, that journey often comes with even more layers. We spend sleepless nights researching, reading, thinking, and honestly, worrying. The morning brings a never-ending to-do list. Our families, work, other responsibilities if we have aging parents, and of course our marriages and partnerships. Our focus is so intensely outward that we don’t even notice the shifts happening inside us.

And then, one day, we wake up feeling different. Maybe it’s brain fog. Maybe it’s anxiety creeping in out of nowhere. Maybe it’s sudden weight gain, disrupted sleep, migraines, or the kind of fatigue that no amount of coffee can fix. If we even take a moment to acknowledge it, we chalk it up to stress, parenting, or just “getting older.”

So we make time to go to the doctor. We are not sleeping, stressed, anxious, tired, back hurts, and are having weird heart palpitations. We leave the doctor with prescriptions for antidepressants, sleep medication, and referrals to cardiology, and the headache clinic at the local neurologist.

Aside from that, we beat ourselves up. We might feel shame for our short fuses with our loved ones, we lose interest in our careers and jobs that once filled us with purpose, we are shocked by the face looking back at us in the mirror (and the handfuls of hair circling the drain after a shower), and guilt because we are too exhausted to nurture our marriages and partnerships.

And, just like everything else, we shoulder it all. We decide that we should be better mothers and wives, and friends. We should be more patient and loving. We should cook the right food and do the right programs and decide on the right paths for our kids, and take care of our aging parents, and volunteer at the kids’ schools. And, when we pass out the drive-thru dinner, let the kids binge watch TV because we have a throbbing migraine, and totally lose our shit with our 97 year old mother who wants a ride in the middle of the day to get her hair done (OK, that one’s me), We beat ourselves up ever more.

Ladies.

Research tells us that perimenopause begins about 10 years prior to menopause itself. That means things start showing up when we are 35-40.

The Overlap We Don’t Talk About – But are certainly going to start!

Dr. Mary Claire Haver, a leading voice in women’s health, has been on a mission to educate women about perimenopause—the years leading up to menopause when our hormones start fluctuating wildly. The symptoms are real, they are disruptive, and, they are routinely dismissed as other things. And, in worst case scenarios, dismissed as nothing at all.

Then, we layer that reality onto our specific lives as mothers of children with Down syndrome. We are so absorbed in their health, their development, and their futures that we completely ignore our own well-being. We push through, assuming that what we feel is “normal” or that it will pass. Yet in private you now we are all sitting in a panic state of hoping we live long enough to see it all through. If we felt healthy and balanced, we wouldn’t be thinking in those terms. It’s a huge red flag.

We need to start listening to our own bodies and we need to come together as a community not only of mothers of children with Down Syndrome but as women.

We Brush Off Signs for Years

• Fatigue (but isn’t that just motherhood?)

• Mood swings or increased anxiety (we tell ourselves we’re just overwhelmed)

• Weight gain, especially around the middle (we blame stress eating)

• Brain fog (we assume it’s lack of sleep)

• Joint pain (we think we’re just getting older)

• Worsening PMS or irregular cycles (we don’t even have time to track them)

• Back pain, joint pain, new autoimmune issues, creeping up LDL cholesterol (Just part of getting old; How is that any better than That’s just DS?)

Ignoring perimenopause doesn’t make it go away. In fact, ignoring it makes everything harder. Just as we strive for metabolic balance, emotional regulation, and Mind / Body / Spirit integration for our children, we need to prioritize that for ourselves.

What Can We Do?

1. Learn About Perimenopause – Follow experts like Dr. Mary Claire Haver and start educating yourself. Knowledge is power. Ironically, we have a huge foundation of knowledge that makes this learning curve so much easier. We know about genes and metabolism and we know about methylation and individualized nutrition. We need to apply it, compassionately, to ourselves.

2. Prioritize Nutrition – Blood sugar balance, fiber intake, and anti-inflammatory foods are key. And, by the way, this is the way we strive to feed our children. I would never dream of handing Lucas a donut, but if I hadn’t eaten in several hours and was exhausted needing a pick me up, I’d probably hand one to myself. Why? Why do I value the things I do for my children more than the things I do for myself?

3. Move Your Body – Not just to “lose weight” but to support muscle, bone, and brain health. 3 out of 4 people with Alzheimers are women. Average age of onset is 65-70, and science tells us the process began 10-15 years prior. Menopause. Decreasing estrogen on top of our already increased risk genetically, we need to epigenetically protect our brains.

4. Support Your Nervous System – Sleep, stress management, and mindfulness matter. If you’re running on fumes, something has to give.

5. Get Labs Checked – Don’t let a doctor dismiss your symptoms. Advocate for a full hormonal panel, thyroid check, and metabolic health markers.

Let’s pause. Take a deep breath. Ask ourselves: How am I really feeling? If the answer is “not great,” then it’s time to make yourself a priority.

Our children deserve strong, vibrant, healthy mothers. And we deserve to feel good in our own skin.

The longer I am on this road I realize Lucas’s needs are not special , they’re my needs too. Here are some ways our overlapping paths can merge into one beautiful journey.

1. Walking / Jogging together – Lucas and I have been walking and jogging together since he was little. (When I was 45 I chalked my knee pain up to that – probably not!)
2. Weight training together – Lifting heavy things is how we will continue to be active in the last part of our lives. Weight training is very organizing and regulating for Lucas, why not do it together.
3. Time Alone – Not everything has to be together. Meditating, a yoga class, journalling, crafting, reading, drawing, painting, singing, dancing, etc. Why do all the things that fill our spirit not deserve a line on the daily to-do list?
4. Be compassionate. If your child was exhausted from a long day would you demand they get up and go for a 3 mile run? Of course not. But our bodies tell us in a thousand ways we need to rest and we ignore the message. We feel it is shameful to take the luxury of nap when we could be __________ (fill in the blank) with any number of things we could be doing for others.
5. Love. When I was a young woman I was very concerned about my body and appearance. It was part of my identity. When that begins to fade it not only creates a crisis of identity, but we ignore it and fill that difference with motherhood. “I may be up 15 pounds, have pounding headaches all the time, and feel depresses, but I can push through…I can’t stand the way I look or feel, but it’s whatever.” It’s not whatever. Our bodies are beautiful and powerful. They birthed children, they love and carry those in need, and they create homes and schools and faith communities. Take some time from sending it all to others, and send some love to yourself.

We are not just mothers, wives, and daughters – we are women.

Let’s redefine the whole damn thing together.

Powerfully Menopausally,

Geralyn