28/09/2026
Alex’ Dad talks/writes ALOT.
Within social media, most brains accept and intake 30 seconds, perhaps a minute.
If you have more than that in you, he is never wrong: insightful, raw, factual.
💜 BEFORE SEPTEMBER ENDS AND OCTOBER TURNS PURPLE
A Rett Dad and Veteran’s Reflection on Su***de Prevention, Caregiver Mental Health, Military Service, and Remembering to See the Person Who Is Always “The Strong One”
October is almost here.
For our family, that means purple.
Rett Syndrome Awareness Month.
MECP2.
Research.
Communication.
Seizures.
AAC.
Caregiving.
Clinical trials.
The realities Alex and thousands of other people with Rett live every day.
I will spend October talking about those things because they matter deeply to me.
But before September disappears from the calendar, I want to slow down.
Because September is also a month when many of us talk more openly about su***de prevention.
And I do not want to rush from one awareness color into another without talking about something that belongs inside both conversations:
the mental health of the people carrying very heavy things.
Parents.
Caregivers.
People living with disabilities.
Military families.
Active-duty service members.
Veterans.
Sometimes those worlds overlap inside the very same person.
They do in families all around us.
And sometimes the person everybody describes as “the strong one” is the person nobody remembers to ask about.
💜 CAREGIVER AWARENESS CANNOT STOP WITH “YOU’RE SO STRONG”
When someone is raising or caring for a medically complex child or adult, people often see the visible pieces.
The wheelchair.
The feeding tube.
The seizures.
The medications.
The appointments.
The equipment.
The hospital stays.
What they may not see is what happens inside the caregiver.
The constant scanning.
Did her breathing change?
Was that a seizure?
Does she hurt?
Did we order the supplies?
Will insurance approve this?
Who is covering the next appointment?
What happens when this equipment breaks?
What happens when she becomes an adult?
What happens when I become old?
What happens when I am no longer here?
Those questions do not disappear when everybody else goes to sleep.
National caregiving research now estimates that about 63 million Americans, nearly one in four adults, are family caregivers. More than 40% provide high-intensity care, and more than half perform complex medical or nursing tasks. The same research found high emotional stress is common, with many caregivers also reporting physical strain, financial pressure and isolation.
That does not mean caregiving automatically produces a mental-health crisis.
It means we should stop pretending love makes people immune to exhaustion.
You can love your child beyond words and still be overwhelmed.
You can be grateful for your family and still feel afraid.
You can believe deeply in the value of the person you care for and still admit:
I am tired.
Those truths do not cancel one another.
💜 RETT AND MECP2 CAREGIVERS LIVE WITH A PARTICULAR KIND OF VIGILANCE
In Rett syndrome and other complex MECP2 disorders, caregiving can stretch across years and decades.
Sometimes across an entire lifetime.
It can mean learning seizures, autonomic changes, breathing patterns, GI issues, positioning, orthopedic complications, equipment, communication systems, medications and subtle changes in a person who may not be able to simply say:
Dad, something is wrong.
That creates a kind of vigilance that is hard to explain to someone who has never lived it.
And I think our Rett awareness has to become mature enough to say:
Supporting the person with Rett and supporting the caregiver are not competing priorities.
Alex deserves dignity, communication, healthcare, opportunity and a full life.
Her caregivers also need sleep.
Healthcare.
Respite.
Community.
Someone to notice when we are struggling.
Because sustainable caregiving requires human caregivers.
Not superheroes.
💜 SOMETIMES “I’M FINE” REALLY MEANS “I DON’T HAVE TIME TO FALL APART”
That may resonate with a lot of parents.
There is medication to give.
A child to transfer.
Another appointment.
Another insurance phone call.
Other children who need you.
A spouse who needs you.
Dinner.
Work.
Laundry.
School.
Church.
Another night.
Another morning.
So when somebody asks:
“How are you doing?”
the automatic answer becomes:
“I’m fine.”
Sometimes we are.
Sometimes we are absolutely not.
And sometimes caregivers become so accustomed to functioning under pressure that we stop recognizing how much pressure we are under.
The CDC specifically acknowledges that combining caregiving, everyday responsibilities and one's own health can be challenging for families caring for disabled children or adults.
That is one reason I think su***de-prevention awareness belongs in the disability community too.
Not because every overwhelmed caregiver is suicidal.
Most are not.
But because nobody should have to reach a crisis before someone decides their mental health matters.
💜 AND THEN THERE IS ANOTHER COMMUNITY I CANNOT LEAVE OUT
Veterans.
I am a Rett dad.
I am also a veteran.
Those are very different parts of a life, but they can occupy the same nervous system.
Military culture teaches many of us how to push through.
Do the mission.
Carry the load.
Take care of the person beside you.
Keep moving.
Those qualities can save lives.
But sometimes the same person who knows exactly how to show up for everybody else has a much harder time saying:
I need somebody to show up for me.
The most recent VA national report, released in 2026 using 2023 data, recorded 6,398 Veteran deaths by su***de in 2023. Sixty-one percent of those Veterans had not received VA healthcare during the previous year. VA also continues to identify issues including pain, health problems, sleep problems and declining physical ability among commonly documented concerns in Veterans who died by su***de.
Those numbers are people.
Someone's husband.
Wife.
Dad.
Mom.
Brother.
Sister.
Friend.
Battle buddy.
And some Veterans are also caregivers.
Some are raising disabled children.
Some are caring for spouses.
Some are living with their own injuries or disabilities while caring for someone else.
Life does not place these identities into separate boxes.
💜 THAT IS WHY “CHECK ON YOUR STRONG FRIENDS” CANNOT JUST BE A SLOGAN
Sometimes checking in means going farther than:
“You good?”
because we all know the socially acceptable answer.
Yeah.
I'm good.
A better question might be:
How are you really doing?
Are you sleeping?
Are you carrying more than you can manage right now?
Do you need me to sit with you?
And when there are warning signs or real concern, it is okay to be direct about su***de.
The 988 Lifeline recommends talking openly and matter-of-factly, listening without judgment and getting help rather than avoiding the subject.
Sometimes love sounds like:
“Are you thinking about su***de?”
Not because we are putting the idea into someone's head.
Because we care enough not to make them hide it behind softer words.
💜 SU***DE DOES NOT HAVE ONE CAUSE
I think this matters especially in awareness posts.
We should resist simple explanations.
There is no single personality type.
No single diagnosis.
No single event.
No single reason why someone reaches that point.
The 988 Lifeline describes risk as involving many possible factors, including serious illness, trauma, financial or relationship loss, hopelessness, isolation, substance use, previous attempts and access to lethal means. Risk factors do not predict one individual's future, and protective factors such as connection and access to care matter too.
That means awareness should not become:
“Look for one obvious sign.”
Sometimes there is no dramatic announcement.
Sometimes a person is still making appointments.
Still packing lunches.
Still giving medications.
Still showing up for work.
Still joking.
Still taking care of everyone else.
And still hurting.
💜 IN THE RETT COMMUNITY, WE TALK CONSTANTLY ABOUT PRESUMING COMPETENCE
Maybe there is another lesson hidden there for the adults surrounding our loved ones too.
Do not assume somebody is okay because they are functioning.
Do not assume the caregiver has support because they make hard things look routine.
Do not assume the veteran who never talks about what hurts is unaffected by it.
Do not assume faith eliminates depression.
Do not assume strength eliminates vulnerability.
Do not assume somebody who helps everyone else knows how to ask for help themselves.
Sometimes awareness begins by becoming a little more curious about the human being in front of us.
💜 AND SUPPORT SHOULD COME BEFORE THE BREAKING POINT
I would love for our communities to get better at this.
Not:
“Call me if you need anything.”
Something specific.
I'll sit with her while you sleep.
I'll take your other child to practice.
I'll bring dinner Thursday.
I'll go to the appointment with you.
I'll make the phone call.
Let's get coffee.
I'm going to check on you tomorrow too.
Do you want help finding someone to talk to?
Support does not always require solving someone's life.
Sometimes it means reducing the weight by five pounds before that weight becomes impossible to carry.
💜 OCTOBER WILL BE ABOUT RETT. BUT THIS BELONGS THERE TOO.
When Rett Syndrome Awareness Month begins, I will talk about MECP2.
Gene therapy.
DAYBUE.
Communication.
Seizures.
Dystonia.
Adults.
Boys and men.
Research.
Hope.
Dignity.
But I also want to remember the mothers and fathers sitting beside hospital beds.
The grandparents who stepped into caregiving roles.
The siblings who grew up faster than anybody realized.
The spouses trying to hold a marriage together between appointments.
The caregivers wondering who will care for their adult child someday.
The veterans who carried things home from military service and then became caregivers carrying something entirely different.
The people who have become exceptionally good at staying operational.
They matter too.
Caregiver mental health is not a side issue in disability care.
It is part of family health.
💜 SO BEFORE SEPTEMBER ENDS, MAYBE WE SHOULD ASK ONE MORE QUESTION
Not:
“How do you do all of this?”
Not:
“I could never be as strong as you.”
Not:
“God only gives special children to special parents.”
Just:
How are you?
And then stay long enough to hear the answer.
If the answer is uncomfortable, do not run from it.
If somebody says they are struggling, believe them.
If somebody talks about su***de, hopelessness, feeling trapped, unbearable pain, being a burden, withdrawing or suddenly acting very differently, take it seriously. Those are among the warning signs highlighted by the 988 Lifeline.
You do not have to become their therapist.
You do not have to have perfect words.
You can help connect them to someone trained to help.
💜 AND IF YOU ARE THE ONE CARRYING TOO MUCH
You do not have to wait until you have decided whether your pain is “serious enough.”
In the United States, call or text 988 for the Su***de & Crisis Lifeline. It is free and confidential.
For Veterans, service members, National Guard or Reserve members, Dial 988 then Press 1 to reach the Veterans Crisis Line. You can also text 838255. You do not have to be enrolled in VA healthcare to use it, and loved ones concerned about a Veteran can reach out too.
And if you are worried about somebody else, you can call 988 too.
You do not have to diagnose them.
You do not have to know whether they “really mean it.”
You just have to care enough not to leave them alone with something this heavy.
💜 SEPTEMBER MAY END. THE NEED TO NOTICE PEOPLE DOESN’T.
October will turn purple.
We will raise awareness for Rett syndrome.
We will fight for research.
We will talk about the person behind the diagnosis.
Maybe this year we should also remember the people standing beside that person.
Because sometimes awareness is learning the gene.
Sometimes awareness is funding the science.
Sometimes awareness is making a building accessible.
And sometimes awareness is looking at the caregiver, the parent, the veteran, the person everyone depends upon and saying:
I see you too.
Not because they are weak.
Because they are human.
No awareness month should end with the calendar.
Su***de prevention does not stop October 1.
Rett awareness does not stop November 1.
Veterans do not only matter in November.
Caregivers do not only matter when they finally collapse.
We keep showing up.
For the person with Rett.
For the person caring for them.
For the person who served.
For the person who looks strong.
For the person who is struggling quietly.
For each other.
💜
— Alex's Dad
Sometimes the person keeping everyone else alive needs somebody to ask whether they are okay too.
Check in. Ask directly. Listen without judgment. Stay connected. Help carry the weight.
Hope, not hype.
Strength without silence.
The person before the diagnosis.
The human being behind the caregiver.
Dignity, always.
***dePrevention ***deAwareness ***dePrevention
