How I Navigate the Stormy Waters of My Daughter’s Diagnosis

O06_3437 Though my feet are firmly planted on desert soil, my soul is lost at sea.

Sometimes the ocean of my daughter’s diagnosis is calm. I find myself floating just at the surface, with every newly acquired word or skill she’s mastered like a ray of sunshine on my face. Her accomplishments, big and small, feel like ripples of joy surrounding me. She has this incredible joyful nature. She’s almost always happy, and she spreads her happiness around to everyone she comes in contact with. It’s beautiful to see how she lights up the world around her. I bask in her sunny disposition, but then out of nowhere I begin to drown again.

I never really know the cause of the storms. Sometimes it’s just seeing the gap grow between her and her similarly aged friends. Sometimes it’s a phone call from a specialist, sometimes it’s making a phone call to a specialist. Sometimes it’s nothing. Sometimes the waves just suddenly appear, the sky turns black, and I fall below the surface again. My lungs fill with the icy waters of grief, and I can’t breathe as the weight of my daughter’s condition crushes me. I plummet toward the bottom.

It wasn’t like that at first. Her diagnosis came in waves, and I was just getting my feet wet when the real diagnosis came. My daughter was first diagnosed with “delays,” but that didn’t seem too bad. We just need to do some speech therapy and we’ll get back on track. We’ll get her caught up. We can do this! She doesn’t have too far to go.

After her MRI, we learned she has a structural brain abnormality, coordination delays, speech delays, and she will probably have epilepsy. It’s OK. We’ve got this. Her neurologist impressed upon me the importance of early intervention. Thankfully, she’s neurologically functional, so with enough work and intervention, she has a chance for a good life — maybe even a “normal” life. I stood on the shore and saw a beacon of hope far out in the distance. I made my checklist of things to do to get her to the other side of her condition, the side where we can hold on to the notion of the child we thought we had. I dove in headfirst and swam hard and fast, accomplishing everything that needed to be done for her. Therapists, check. Specialists, check. Keep swimming. Evaluations, check. Keep going. Almost there. Follow-ups check. You’re done! But I had not arrived. I didn’t even realize I’d been swept out to the middle of the ocean, and I was exhausted. Spent. I cannot go any further. 

Her therapies are like anchors in my week. 9 a.m. Wednesday occupational therapy, 10 a.m Wednesday speech therapy, 12 p.m. Thursday physical therapy, 9 a.m. Saturday Hippotherapy. 7:45-10:15 Monday, Tuesday, Thursday, Friday special needs preschool. Every other moment is spent being tossed around, unsure of which way I’m heading.

I love watching her work and make progress. A few months ago she couldn’t ride a bike; now she can. Last week she identified a few letters in her name. This week, she sat down and did everything her therapists asked, and she kept her attention on their activities the whole time. It’s so exciting to see her overcome her challenges. I feel the sun on my face; I see hope. The waters are calm. and everything is going to be OK.

My search and rescue party is small. I keep my circle tight. I hear all the time how, “You’re handling everything so well.” And, “I don’t know how you do it.” And, “You’re superwoman!” but most people have no idea that I’m drowning, and I have to take refuge under my covers every afternoon when my daughter naps because I just need a reprieve from the grief and sadness that swirls around me. They don’t know that I’m trying to find the right antidepressant so I can be functional again. They only know my brave face.

I’ve become so skilled at navigating questions about my daughter. It’s rehearse, recite, repeat. The common question of, “How is your daughter doing?” is easy. List the accomplishments, list her schedule, list her diagnosis and finish with “She’s doing great!” The question that I cannot answer is, “How are you doing?” Uh oh. We’re taking on water. Adjust the sails, change the subject, get the hell out of there because the storms are coming in again. And I thought the forecast was sunny. I get pulled under again, start to sink. I’m not sure if it’s my asthma or my anxiety, but my lungs aren’t working and I can’t breathe.

Luckily, there’s always a loving outstretched hand that plunges into the water to pull me back to the surface. A precious friend who knows I’m drowning or my husband sends a text at just the right time. They lift me up when I need it most so I can float on a little longer. They know the unpredictable and tumultuous nature of my emotions. They know when I need to have fun, when I need to cry, when I need to laugh, when I need to run and they know all of those things could happen in the span of moments. They part the clouds, and I’m back in the calm center of the storm where I can find the sun again, enjoy my daughter and focus on the things that need to be done for her. I can barely make out the shore, but it’s there. There’s hope out there for her, for us.

My deepest desire is that this journey won’t last forever. It seems that this ocean filled with my own tears is vast and deep, and every time I think I’m getting better and accepting of our new normal, I get pulled further out to sea. I hope someday soon I’ll make landfall and stay out of the deep forever. I’ll visit from time to time, but never need to cross it again.


Find this story helpful? Share it with someone you care about.


Moments Like This Make Me Forget the Fear I Had When We Got the Down Syndrome Diagnosis

For many new parents of a child with Down Syndrome, it’s far too easy to focus on the diagnosis and the challenges. It’s far to difficult to imagine the wonderfully rewarding and simple everyday stuff that actually makes up the bulk of our lives. But over time, the looming enormity of the diagnosis begins to give way [...]

Official Rules: Ready for Recovery Cancer Treatment Planner Giveaway

No purchase necessary to enter or win. A purchase will not increase your chances of winning. Sweepstakes is subject to all applicable federal, state and local laws. ELIGIBILITY: Open only to legal residents of the fifty (50) United States and the District of Columbia, 18 years of age or older. Void where prohibited. Employees and [...]

This Young Woman Captures What Depression Feels Like in a Beautiful and Heartbreaking Way

This is a powerful and unflinching look at a very serious condition. Sabrina Benaim, 26, is a spoken word poet from Toronto who struggles with depression and anxiety, according to her website. In the performance below, she spectacularly articulates what it feels like to live with these conditions and the frustration that comes from trying [...]

When I Started Eating Lunch With My Classmate With Down Syndrome

Differences surround us. They can define us. They can hurt and separate, shape us and inspire us. In fifth grade, the last thing most people want to be is different. That’s when I met Caleb, as we were waiting for the bus to take us home. Caleb was obviously ready for the school day to be [...]