"You Are Still in There" by Denise Servais
Summer Season of "Letters From A Caregiver"
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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why? I created Carer Mentor to offer heartfelt empathy for Caregivers. It’s a hub of practical tools, resources, and insights. A community support network for all of us human-ing hard. ❤️ Start exploring here.
Letters from a Caregiver.
“Letters from a Caregiver” is a weekly article where a caregiver offers their wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!
Since September 2025, thirty-two letters have been posted over three seasons.
This Summer Season so far
“Caregiving is a continuous evolution of my love, trust and courage.” by Victoria
“You Have to Receive in Order for the Circle of Love to be Complete” by Kaeli Hansen Caregivers Count with Kaeli
“When Wishes Come True” by Cindy Roman, who writes Alzheimer’s Witness
“Accept Caregiving Help When You Can” by Sue Montgomery, RN, BSN, MA
Today’s ‘Letter from a Caregiver’ is by Denise Servais
I met Denise in January 2026. I was curious to learn more about her daughter’s illness, Prader-Willi syndrome.
*Prader-Willi syndrome (PWS) is a rare genetic disorder characterized by chronic hunger, growth hormone deficiency, and behavior challenges.
PWSA USA explains more: PWSA | USA
Now I’ve an appreciation of the extensive impact of the syndrome’s symptoms, not just day-to-day but over someone’s lifetime: What is Prader-Willi Syndrome.
Denise’s writing incisively points to the caregiving issues she faces but also illuminates the smallest of moments with the kind of humour that resonates. When you know, you know - life is in the small moments, the painful and precious.
I recommend reading these articles by Denise:
Many thanks to Denise for sharing her moment in the car with us. xo
Author’s Bio: Denise Servais is a speech-language pathologist, writer, disability advocate, and is married with three daughters. Her middle daughter, Maya, has Prader-Willi Syndrome and autism, and Denise writes about the complicated, often unseen realities of caregiving with honesty, compassion, and humor. She is the creator of Ground Level, a Substack publication for caregivers and anyone navigating a life they did not expect. Denise also serves on the national board of the Prader-Willi Syndrome Association | USA. She is from St. Paul, MN.
You Are Still in There
Dear Younger Me,
There will be a night when you come home from the grocery store and park the car in the garage. You will sit there with your hands still on the steering wheel, thinking about how overwhelmed you are, and you will start to cry. It will come from somewhere deep inside you and take over your whole body.
Maya will be about five, and her behaviors will feel out of control. Her meltdowns will get louder as she gets bigger. You will feel frustrated and defeated because the parenting techniques you used for Maya’s older sister, Maddie, won’t work for Maya. Mallory will be only one, and you will be raising three young children while trying to manage needs that seem bigger than anything you know how to handle.
By the time you pull into the garage, everyone else will be asleep inside the same house you still live in today. It will be a cold winter night, and you will start to feel the chill as you turn off the engine. You will be alone in the car with the grocery bags and your thoughts, which may be why, on this particular night, you finally understand how bad things have become.
You will sit there and think, I can’t do this anymore. What you will mean, although you may be afraid to say it even to yourself, is that you do not want to exist anymore.
I am writing to you about that moment because it will stay with you for the rest of your life. This may not be the hardest night you ever experience, but it will be the night you finally understand that something has to change. You will realize that carrying in the groceries, getting up the next morning, and making everyone breakfast is not proof that you are fine.
Before caregiving changed the map, you had a plan. You were going to keep working full time and maybe earn your PhD someday. You worked with children and adults with disabilities, so you thought you understood this world, and you believed that experience had prepared you for whatever might come.
It had not.
Being a speech therapist will help with some things. You will understand the reports and know which questions to ask and you will know how to sit in meetings and sound calm even when you are not. But none of that will prepare you to be Maya’s mother. At work, you can make recommendations, finish your notes, and go home. At home, there is no going home.
You will believe that because you work in the disability world, you should be able to handle this without help. You will treat every difficult day as a problem you ought to be able to solve if you just work harder. But that will be the speech-language pathology (SLP) speaking. The mother and caregiver will need help, and she will need to learn how to ask for it.
You never imagined you would become the mother of a child with significant disabilities, or that people might begin to know you primarily as the mom of the child who always seems to be having a meltdown. You never imagined how much of your life would be measured in appointments, paperwork, supervision, safety plans, and explaining the same things repeatedly to people who still might not understand.
You will feel as though caregiving has taken away parts of you, like your spontaneity and humor. For a while, there will be so little room for anything except caregiving that you will assume those parts are gone, but they are not gone.
As you carry the groceries into the house that night, you will wipe your face and keep doing all the ordinary things that still have to be done, even after something inside you has cracked open. But this time, continuing will not mean pretending.
In the days that follow, you will begin doing what you always do when life feels impossible, you will make a plan. This time, the plan will not be for Maya. It will be for you.
You will call the insurance company and find out what resources are available. When you mention to the representative that you think your daughter needs an autism assessment, the man on the other end of the call will patiently and kindly walk you through organizations that can help.
You will get counseling, go to the doctor, and acknowledge that you are depressed. You will finally say aloud that you cannot do this alone. You have believed that because you are capable, you shouldn’t need anyone, and that a strong mother keeps going, figures things out, and protects everyone else from how difficult life has become.
You will slowly learn that Maya does not need you to do everything. She needs you to stay present and let other people help.
You will find other mothers who understand what it means to live with constant vigilance. You will meet these mothers at Maya’s school, through organizations that help people with special needs, and through other friends. Some of these women will remind you that you are still funny, interesting, and allowed to talk about something besides Maya. There will also be friends who may never fully understand what raising a child with significant needs is like, but who listen, stay present, and try. Hold on to those people.
The humor will still be there. It may become darker and slightly less appropriate for polite company, but it will survive. Your stubbornness, your love of music, your sarcasm, and your ability to laugh at the absurd will find their way back.
You will not recognize yourself some days. There will be times when caregiving takes up so much space that you will wonder whether there is anything left of the person you were before.
There is.
You will become more assertive and learn to advocate even when your voice shakes. Eventually you will get tired of apologizing before you ask for something Maya genuinely needs. You will learn that patience does not require silence.
You will also learn, slowly and stubbornly, that you can’t control everything. This will be one of the hardest lessons. You will realize that despite all your attempts to secure a good outcome for Maya, she will still move at her own pace. Her milestones will not always match the ones you imagined. You will try therapies, schools, medications, behavior plans, and living arrangements, and some will help and others will make things worse. Sometimes they will work until they suddenly don’t. You will have to stop treating every bad outcome as proof that you chose wrong.
Your freedom will change too. Before, freedom might have meant a spontaneous weekend away or saying yes without first considering schedules, behaviors, supervision, food, safety, and five other variables. Later, freedom might mean sleeping through the night, taking a drive alone, or having someone else take over for two hours. You will learn how much those small moments matter.
You will think you have finished grieving, and then it will come back. Sometimes you will think you have made peace with the life you did not get, and then something ordinary will remind you of it. A birthday, a school event, or a casual conversation with another mother will bring it all up again.
When grief comes, let it come. There will be times when you miss the life you thought you would have, but that doesn’t mean you love Maya any less.
Please don’t wait so long to seek help and don’t wait until you are sitting alone in a garage. Tell someone how bad it is before you reach the point you did that night. Let people help even when they cannot fix it.
I wish I could tell you that after that night, you will never again pretend to be fine or wait too long to ask for help, but you will. You are still learning this lesson, even now.
That night will be a beginning. You will walk into the house carrying groceries and the knowledge that the way you have been living is no longer sustainable. You will begin to understand that accepting support is sometimes the only way you can keep going.
Stop apologizing so much, and pretending this is easier than it is. Stop measuring your family against everyone else’s ruler.
You are still in there. Even now, I sometimes have to remind myself of that, usually as I pull into the same garage I pulled into that night. One day, you will look back and understand that you did not disappear. Life changed you, but it did not erase you.
Love,
Denise (2026)
One last question to close the letter from Victoria.
Please share one quote/movie/book that’s inspired you.
The Gifts of Imperfection by Brené Brown. It helped me understand that strength is not pretending you have everything under control, and that sometimes strength is admitting you need help because you are only human.
Prompt for Discussion
When did you first realize that you needed support too, not just the person you were caring for?
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I admire you so much, Denise, for having the strength to care for your child - and the wisdom to also take care of yourself. When I was caring for my mom with dementia, there came a time when things were so difficult that I had started thinking it might be better just to end my life. As soon as those thoughts started coming to me, I knew I had to get help for myself. I began seeing a counselor, who supported me through the end of my mother's life.
Parents caring for children with unique needs are heroes. But they are also only human. Thank you, Denise, for reminding us of both. Thank you again, Victoria, for this profound series of letters.