Charities: STOP RAISING MONEY FROM RETT FAMILIES

Note: I started writing this post nearly 6 years ago. I revised, revised, revised for all these years. I almost posted it so many times and stopped myself. I continually ask myself “what is the end-game here? What is my goal?” and I understand how emotionally charged this topic can be.

Possibly better than most because I was a co-founder of a charity myself. I KNOW the fallout that can be caused when groups are segregated by the charities they support in an us-vs-them dynamic.

I encourage all participants in reading this post to read all the way to the end with an open heart.

So…what caused me to choose to post this NOW? Well…I received an email from a long time reader. He pasted the contents of an email he had received from a Rett parent who appears to be raising funds for a charity. Amongst the many lines which concerned me were phrases like: “It appears that 2019 will be the turning point after succeeding time after time to completely cure animals in lab conditions.” and “we are waiting for FDA approval to begin clinical trials in Rett syndrome girls, aiming to achieve complete cure. The expected approval is due to be granted in the first quarter of 2019.”

You will read below the many reasons why emails like this are so scary to me, ESPECIALLY the reference to animals in labs being cured. And especially ESPECIALLY since there are already FDA-approved clinical trials and this is not a new phenomenon.

Another reason I chose to post this now is that I spotted a leading charity explicitly campaigning to find a Rett family to spearhead an event to “speed the research”. This was positioned with a “now is the time” urgency. Rett families hardly have the energy to spearhead dinner time let alone the launch of a city-wide event. The lack of shame of lazy charities to solicit families (the population THE CHARITY SHOULD BE SUPPORTING) for support has reached a new low and I am not standing for it any longer.

So, without further ado…I give you the post 6 years in the making…

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Pop quiz: Let’s say you’re raising money for starving people in a developing nation. Or the homeless. Or refugees. Or victims of terror. Should you:

a. Get your money from those people

b. Get it somewhere else

Someone sent me a newspaper article about a little Rett girl here in America and her medical needs in relation to proposed Medicaid cuts. It scared me because at the time, Grace was also a Medicaid recipient.

But another thing that scares me is toward the end of that article talking about the desperate state of the little girl is the following: “(dad) works on the side as a Realtor, selling about seven houses a year. He donates half of every commission to Rett research.” That’s tens of thousands of dollars a year given to Rett charity. By a Rett parent. The very person that charity could be supporting.

Listen, charities shouldn’t be propped up by the population they are supposed to be servicing.

Homeless people don’t fund homeless charities. To ask this would just be inept. And lazy. And not at all intelligent or resourceful.

I don’t fault the families who raise funds or give their own money to the charities. I fault the charities who spread little soundbites and PR spin and call it “hope” and whip the community into a “cure is coming!” frenzy and get families pumping in money like they’re buying a cure. So here’s a soundbite: that famous mouse who was “cured” of Rett syndrome was genetically modified at its creation in a lab to be a mouse whose genes could be reversed. That mouse’s disease was modified with an off switch. At a gala event, I heard Professor Bird (whose lab did that experiment) say that this is not a sign of a magic bullet cure and that he’s not the Rett syndrome savior and that this doesn’t automatically connect the dots to a cure. Why? Because our girls weren’t created in a lab like that mouse. Their genes don’t have a convenient off switch. And why did he say that? Perhaps he was aware, at that gala fundraising event, that the buzz in the room was that you should give us your money because what happened to that mouse can happen for your daughter “if only we had the money to pay for it”. I was once told by a charity executive director in the UK that, “we could literally cure Rett with like…eleven million dollars.” Having been intimately acquainted with Rett charity leaders and the Rett community globally, I know one thing for certain: parents have been led to believe Rett can be cured if we throw enough money at it. And if this is true, then by all means, throw money. But you know who has more money than Rett parents? Starbucks. Or any other corporate in America.

When we were running Cure Rett, we came very close to getting our money pots on counters in Starbucks in the UK. Additionally, the flagship stores were going to run a happy hour and donate from every drink sold and this would have equated to hundreds of thousands of pounds. We failed to secure this gig at the last couple hurdles, but we were just a rag tag team of four tired parents (and one god parent) fumbling through the start up of a scrappy grassroots thing. If we can do it, so can long-time established charities who are currently relying on parents for support. If charities put the energy into getting to know how corporates, foundations, grants and private funds work, they can be 100% funded by them.

When Grace was diagnosed 8 years ago, I was told by that same charity executive director in the UK, “don’t fuss with that eye gaze stuff. There’s gonna be a cure in 5 years. When are you doing your first fundraiser?” How about never.

I put money into caring for my kid who HAS RETT SYNDROME.

Go tap up SMEs, corporates, fortune 500’s and blue chips and get the money to turn around and support our community. Educate parents about how to raise funds for their own daughters. Do fundraising bootcamps. Not for the charity in the name of their daughter but actually for their daughter. For things like eye gaze. Or even just taking her to Disney.

When I was part of leading Cure Rett, one of our executives was advised by the director of a leading charity in the USA: “You have to get them (Rett families) at diagnosis. That’s when they’re the most desperate and motivated to do something. That’s when their families feel helpless and want to help. So when they say ‘what can we do?’ then they can direct them to raise funds for us.”

When people ask what they can do, I tell them: they can babysit, they can help us pay for a wheelchair we can’t afford. These are the things I save my big asks for.

Here’s what no one tells you about fundraising…

Your first raise is your biggest.

After that, your circle gets tapped out. They get “charity fatigue”. In fact, the whole world is suffering from charity fatigue. So here’s the best tip you’ll ever get on Rett syndrome fundraising: make sure your first raise is for your own daughter. Her needs will increase as she gets older. There will be certain pieces of equipment you won’t be able to access without moolah. The charity director I quoted above is right: your family will feel helpless in the beginning and want to help. And make sure they help your daughter first, not a charity.

I once ran into a Rett family at a comedy show (Michael McIntyre…I won tickets in a silent auction at a Rett event…the only money I’ve ever given…because some rich guy said, “my girlfriend wants those tickets. You will NOT get them”. Game on, rich guy.) They were pretty fresh to the diagnosis. The mom, who had never met me before, said, “How can you even believe in God now?!” and all I could think was babe, you’re grieving so hard right now. And when I talked about eye gaze, the dad (whose high powered connections were currently being exploited by the first Rett charity to pounce on him post-diagnosis) looked a bit glazed over, “but…the cure…we don’t need eye gaze. The cure…” Yes, my friend…I know…the cure. The Cure. *sigh

Now, I can hear you saying (and it makes sense): No one’s holding a gun to their heads. No one is being coerced to write checks. No, but coming as a former insider, I can honestly say that these families have been targeted. Read the above quote again:

You have to get them at diagnosis.”

When a new family comes into the community, the sentiment has been “let’s get them – quick – before so-and-so does.” At Cure Rett, we wanted to “get them” so we could offer them family support and photo sessions and awareness collateral and free services and prevent them from being exploited so early. From being pushed into raising money while they are vulnerable. Yes, some families raised money for us. In hindsight, I wish we had literally rejected it and given them permission to feel ok about spending money on their kids. I wish I hadn’t been so silent about the fact this was what I, myself, was doing. I wish I had modelled the behaviour for others. I wish we had given ourselves time to grow healthily into the charity we believed the community needed: a charity who was 100% funded by outside forces. I wish so much. (my heart still hurts over the loss of that sweet little charity).

Here’s a bombshell: charities aren’t the saviours of the Rett world. When I was new to this scene, I was told that there were “no public funds being put into MECP2 research”. That no governments or drug companies were working on this. This is an outright lie. Here’s why:

  1. I had a friend working for big pharma and she sent me internal documents on their Rett research. Naughty, I know…I had no idea she was going to do this but I was like “hey, presto! It’s a lie!”
  2. If you look at the scientific papers published about studies, there’s teeeeeny tiny print at the bottom citing where the funding comes from. They are in the order in which they funded: largest donors at the beginning, lesser ones towards the end. At the beginning are bodies like the NIH (US government) or Wellcome Trust (UK). At the end are the Rett charities.

I know #2 will ruffle some feathers. But c’mon…have you SEEN those numbers? How much the NIH is putting into this? Look at any given study and read the small print about who funded it. There are “heroes” in the Rett world who are supposedly funding all this, but quite simply when you look at the numbers, their efforts are a droplets in the sea. Valuable? Yes! And noble and important and powerful. But depriving your daughter of her needs to raise funds? No.

Charities need to learn to stop depending on Rett families, get off their keisters and start getting money from outside the Rett community. Not from me and you and the family who will get their diagnosis next month. But from the other millions of people who have nothing to do with Rett syndrome and have money to give away.

Because there are people dying and leaving all their money to cat charities.

If you want to raise money for a charity, no one (not even an irritated big talker like me) should stop you. You’re a grown up and can make up your own mind. But whatever you do, don’t feel like your daughter’s life depends on it and for the love of Pete…don’t ask for money from inside the Rett community. And remember: your first raise is going to be your biggest so do that one for your own daughter.

So what’s the solution? Raising lots and lots of money for Rett charities to fund lots and lots of science. And even to pay their employees really really well so they can focus all of their energies on raising more and more money for lots and lots of science.

But for God’s sake, please stop soliciting these funds from the population you’re supposed to be supporting.

It’s important to say that while all Rett charities actively seek funding from inside the community, some charities have gotten smart and sell merch and run education summits and family support events. While I do have some hot anger directed at certain individuals who single-mindedly exploit our population, there are charities who have been pillars of the community for decades – funding long term, sensible and valuable science.

Rett families, spend your money on your girls without shame.

*end rant*

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Stop shaming us for being too busy

To-do list this week:

  • Follow up with insurance company re: diapers appeal
  • Follow up with DME supplier re: feed deliveries
  • Follow up with hospital re: negotiation of large hospital bill
  • Try for a 3rd time to get info from disability charity about completing portions of the Medicaid waiver application which I don’t understand
  • Take Grace to dentist for post-op follow up
  • Get Grace off to school every morning by 7:30
  • Work 7 shifts at the restaurant
  • Keep Jack on task with his online school work
  • Pick Elijah up at school (40 mins away) every day I’m not working. Arrange help the days I AM working.
  • Pick Elijah up early for orthodontist appointment
  • Clean Grace’s bed twice (or else the house will smell like a public toilet)
  • Keep working on website I’ve been contracted to build
  • Make sure someone’s here to collect Grace’s deliveries so porch pirates don’t steal them
  • Return calls for the many voicemails I get from Grace’s people when I’m too busy or tired to answer the phone
  • Manually pay the water bill (because our town lives in the dark ages)
  • Bathe Grace twice (dad does weekend bath, I do mid-week)

Somewhere in there, I squeeze in light cleaning (hubby and teenagers do a lot on the weekends when I’m working), cooking (again…hubby and mother help with this the nights I’m working), sleeping (which I somehow manage to do a lot of, considering) and just general “me time” (bathing, shaving, painting my nails, talking to friends, drinking coffee on my green sofa).

And I beg you to tell me…which of these things am I supposed to just not do when someone sighs, “oh honey you’re just toooooo busy”. Because this is something I hear at least once a week if not more.

And yes…I AM busy! I have 3 kids. Two are teenagers. One has special needs. One goes to a magnet school far away. The other is homeschooled because his school wouldn’t get on board with his ADHD and he is on waiting lists for every charter, Montessori and magnet program in the area. I have a house. A job. A relationship. This is just NORMAL BUSY with the addition of special needs stuff.

When you tell me I’m “too busy”, I feel shame for trying to keep it all together.

Like perhaps it would be better for you if I appeared to be falling apart so you felt better about the way you might be falling apart in your normal life which doesn’t include a chronically ill child. It’s funny to me how people with one completely well child (or no children at all) tell me how stressed and tired and incapable of keeping up with life they are. Just because you can’t handle run-of-the-mill adulting doesn’t mean special needs parents are “doing too much”.

I can’t remember ever ONCE being told I’m “too busy” by fellow special parents. Because my tribe knows these things are non negotiable. I’m not busy. I’m surviving. I’m parenting a kid with a life-long and chronic illness and some weeks, that means just trying to help her not to die from bugs that would just make a typical kid sneeze a couple times.

No…this “you’re tooo busy” advice has been delivered to me exclusively by people who perhaps cannot possibly comprehend how literally impossible it would be for me to do less than I’m doing right now. By people who don’t see me not showering for 2 days precisely BECAUSE I’m in hibernation mode. Or see me in bed with Netflix all day while Jack does school alone. Or know that I quit my career to serve at a restaurant because it’s more money in a shorter period and it gets me out of the house.

I extend the benefit of the doubt to these people because they may not understand that if I don’t spend hours negotiating, arranging and administrating Grace’s care, she will either die of starvation or be taken away by social services. Someone has to bathe her. Feed her. Go to CVS constantly to pick up meds. Work to pay for all that stuff. And that someone is me.

Note: I also have my own autoimmune disease to manage and afford (meds, blood tests, endocrinology appointments) and Jack’s ADHD which is a constant struggle and expense (of course the medication that worked for him was the expensive one!)

“You’re too busy” is in the same category as “let me know if I can do anything”.

It’s a passive attempt at saying something (anything) to not feel like an asshole without actually offering help. And you’re not alone because I have to actively fight saying these things to people, too. Because I also feel like an asshole when people are suffering and I can’t/don’t help. If I don’t have it in me to help, I choose to say nothing at all. Or at the very least, “friend, that sounds really hard.”

Instead of “you’re too busy”, maybe try “what day can I get the kids at school for you?” Instead of “let me know if I can do anything” try “what night can I bring dinner?” Or you can just say absolutely nothing at all. Just because my kid is sick doesn’t mean others are required to pitch in with my responsibilities. This is just my personal adulting experience. It’s just a bit more intense than others. And SOME people have it way harder than me (hello, families with more than one disabled kid!) Honestly…you don’t have to say anything to me if you don’t have time to get involved in our own endless hell.

Consider this…if “you’re too busy” is just you projecting onto me your own feelings about your inability to cope with life, I encourage you to explore those emotions.

But I swear to God…the next person who tells me I’m too busy will be added to a babysitting/school run schedule.

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Pain vs Suffering

Omg you guys.

Oh.

Em.

Gee.

I have had one helluva few weeks after recording what you’re about to hear.

Did you even know that there’s a difference between pain and suffering? And that one is healthy while the other is not. And that one can even alter your future AND you perception of the past?

No, neither did I.

Some background on this recording: I have a business where I support brand owners with photography and marketing strategy. That business is called You is Alpha. Part of the marketing for that business is a podcast called How to be Alpha. There are new episodes every Monday. And on today’s episode, I invited in a psychotherapist who is the program coordinator for the workshop I recommended to Rett parents in this post recently.

Well, I thought we were going to be talking business and instead, we ended up talking about Grace’s diagnosis and I discovered the many ways it’s affecting the choices I make in my life and the hope I have for any kind of joyful future.

Some ? trigger warnings ?

We talk about suicide, self harm (cutting) and of course, I talk a lot about Rett syndrome and the feeling that I’ve lost my daughter.

So because this episode ended up being so applicable to you, my dear Rett friends, I’m also sharing it here on this blog.

How to Listen

You can find How to be Alpha wherever you get your podcasts (iTunes, Spotify, iHeartRadio, Google Play, etc) or you can leave this window open and stream the episode below…

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Apraxia and learning disability in Rett syndrome

Over on our About Rett page, I discuss how Rett syndrome is NOT an intellectual disability (insert middle finger here). Hell, it’s not even a learning disability (not in the traditional sense – more on that later).

RETT SYNDROME IS A PROCESSING DISORDER

The number one most impairing thing about Rett isn’t intellectual impairment (what they used to call “mental retardation”).

IT’S APRAXIA.

Can you believe that? Apraxia! Do you know what that is? It’s one of the -xias (cousin of dyslexia, sister of dyspraxia). Imagine you’re driving (hey, stop texting!) and you turn the wheel left but your car goes right. You switch on the wipers and the volume turns up.

AND WORSE YET?

You hit the gas and NOTHING. HAPPENS. This is Rett syndrome. It’s an inability to order your own body’s movements. Stuff happens (cuz you’re not exactly paralyzed) but it’s not the stuff you’re trying to make happen. Like hand wringing or tremors or weird breathing patterns.

And this is an example of why Grace can’t eat anymore. Slowly, it became harder and harder to order all the movements required to eat. To eat, she has to engage her tongue, throat, jaw and breathing and as her processing ability diminished, so did her ability to do all those things at once.

Definition of apraxia

A (redacted) definition from Wiki:

Apraxia is a motor disorder in which the individual has difficulty with the motor planning to perform tasks

I’m not an expert, but I know a few.

So I asked Rett communication expert Susan Norwell about the role of apraxia in Rett syndrome and here’s what she had to say:

“People with Rett syndrome process auditory and visual info very well unless the are also diagnosed with CVI. They conceptually understand information at an abstract level: get humor, get the “big idea”, are able to read, write and learn new information quickly, are able to do the abstract reasoning to do analogies. None of these things are possible for those with cognitive issues. Apraxia impedes their OUTPUT of information thus making the uninformed think they are cognitively impaired.”

Yaaaas Queen! This is SO GOOD! Susan explains it perfectly there when she says apraxia prevents our kids from getting things OUT and it doesn’t stop information from getting IN. So it would lead “the uninformed” to believe that they’re intellectually disabled, cognitively impaired, mentally retarded (however you prefer to describe that phenomenon).

What about learning disability?

I asked assistive tech expert Hector Minto about whether learning disability is a feature in Rett syndrome and here’s what he had to say:

“It’s difficult to say that Rett is not a learning disability, but eye tracking suggests that the kids have normal attention and understanding. If apraxia stops you in your tracks at a developmental stage of life then it leads to an acquired learning lag. We see the same in some people with muscular dystrophy. It’s purely a muscle condition, but it stops them reading, interacting etc, so that impacts learning.”

I love this explanation for how we can think about learning disability in Rett syndrome. It’s not that the girls CAN’T learn. It’s that this processing disorder can prevent them from accessing the world in a way which promotes a level of learning on par with their peers.

There are many things about living in a Rett body that might cause you to have a hard time engaging in a learning environment. A very simple example is breathing. You may know that breathing abnormalities are a staple in Rett syndrome. Grace’s breathing pattern of choice is breath holding. She holds her breath so long that her oxygen levels drop to the 70s before her body allows her to breathe again. Other kids hyperventilate, swallow air or have shallow breathing.

While it’ll be impossible for you to experience most of the effects of Rett for yourself, this is one you can try right now wherever you’re reading this!

It’s as simple as holding your breath until you almost pass out or hyperventilating until you’re dizzy. Then imagine that you do this once every minute while you’re at work or at school and ask yourself: could I learn this way?

In terms of my daughter Grace, I think about it this way:

You might think someone who doesn’t know the dangers of touching a hot stove or running into oncoming traffic is stupid, unlearned or intellectually disadvantaged. Grace doesn’t know those things. But not because she can’t learn about hot stoves or moving vehicles. It’s just because she’s never had to learn those things due to her disability. There’s a lot Grace will never know about the world. Does she know what color her hair is? I have no idea. Does she know that she has 10 toes? Again…NO IDEA. Does that mean she’s learning disabled? No. If she doesn’t know those things it’s because looking in the mirror isn’t a part of her daily life and, frankly…I’m not so sure we’ve ever told her how many toes she has. Or what toes are. It hasn’t really come up.

But does she know she’s about to have a seizure? Yes. Does she calm down when she sees me filling her feed bag because she knows that’s about to be pumped into her hungry tummy? Yup. Does she know her morning routine and what’s coming next? Yes. Can she anticipate I’m about to take off her shirt and lift her head to help me? Yes. She learned those things because they’re a part of her life. She retains that info and displays that she has learned it.

Now that you know about apraxia, you can become more aware of how it affects your loved one with Rett syndrome and help the professionals in her life to better understand the difference between being cognitively disabled and just having a really hard time with motor planning. In short, Rett syndrome (I imagine) is like living inside a runaway train so be patient and give her a good long time to perform tasks (like saying hello). You’ll be surprised what might happen if you wait for 30 seconds for her to respond!

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Grief like an onion

Keep falling until you can’t fall no more
Until you feel like you’ve been falling for way too long
Then you will know ’bout me -fink

I usually know what I’m about to write when I get to this blank screen. I have a number of posts that sit in my drafts. This has been one of them sitting here for about 2 years and it’s just been a title with nothing in the body. Because what can I possibly say that hasn’t already been said. I feel like I already wrote pretty exhaustively about grief in this post from 2015.

I feel like all I do is bleed.

The day Grace was diagnosed I carried her into the hospital in her carseat. She was 13 months old. Chubby, cheerful and holding a cookie. And as I rounded the corner into the waiting room, I was met with a room full of disabled children. Wheelchairs, drooling, mangled little bodies, strange noises. And I vividly remember telling myself (so loudly inside my own head) “Grace will NEVER be like that. My baby isn’t like THOSE kids.”

And sometimes I fear that newly diagnosed families will land here and see my blood flowing and say “MY life won’t hurt like that will it?” This is not the waiting room you want to be sitting in when you have a chubby little baby carrying mutant genes and a cookie.

I definitely do write about hope, though. If you’re newly diagnosed, you might want to look away. Here’s some more hopeful reading:

There’s a thing called perpetual grief. People say “life is hard and these things happen”. And I tell them, “yes and hard things are supposed to happen, be done. And then another one happens again.” Rett syndrome is grief after grief wrapped in a skin of grief. The initial diagnosis is only the first time the ground gets pulled out from under you. The cycle of grief is perpetual and doesn’t end with acceptance. That’s not part of this cycle. The illusion of acceptance maybe? But then epilepsy starts. And you accept it. And scoliosis happens. And you accept that too. And every 6 months you might have an X-ray where the spine gets worse and you accept those. And she grinds all her teeth down to little nubs. And breaks her legs. And breaks a hip. And spends her birthday in the hospital. And Christmas in the hospital (10 days). And another Christmas in the ICU (16 days and counting). And you accept. And accept. And accept. But the overall package of all this suffering is unacceptable. Rett syndrome is a motherfucker. I try to accept it (with the serenity to accept the things I cannot change) but when I gain some ground, it gives me another black eye.

Life becomes an abusive relationship you cannot leave.

You become a casualty taking care of another casualty. A POW taking care of another POW who is starving just a little less than you. My broken heart is caring for her broken body.

At any given moment -on any given day- I’m experiencing one or more of the stages of grief: denial, anger, bargaining, depression or acceptance. And more than one at a time, because there’s the overall grief of chronic Rett and whatever stage I’m in that day/week/month/year. And then the stage of grief for the current acute crises of the day. Grief on top of grief. A grief sandwich. A layer cake of grief. Grief like an onion.

In this last mid-term election, I heard for the first time of something called rage-voting. Voting in anger. Voting against something instead of for something. And this same vernacular can be applied to any number of normally-healthy things. Rage eating. Rage donating (literally, there’s a website for this ragedonate.com).

The bargaining part has been the hardest phase to become present to in my own life and witness playing out in the life of others. It feels intimately linked with anger. It’s where I think Rett parents can get stunted and there are whole charities currently propped up by being enablers to denial-fueled bargaining and rage-raised funds. I truly believe if Rett charities offered mental health support to parents, their fundraising would decrease substantially. Because until I went through therapy and grief counseling I thought that battle was all I could do. And then I learned to forgive myself for believing this and move through the pain. And I move through pain every day like walking with heavy boots through an ocean of molasses.

You see, for me, bargaining took the form of charity. First supporting a charity of choice (at the exclusion of all others) and then starting one with a group of other parents. I traveled the world trying to be important in Rettdom. Races. Raising money. Mastermind of awareness campaigns. Starting this blog. All under the guise of “hope”. Of “fighting” of “battling” for a cure.

Many calls to action I see are posed in that embattled language of war that feels so familiar to me having grown up in 1990’s American Charismatic Christianity. “Armies” who are “Fighting Rett”. As if we have any power to do such a thing. Rett isn’t cancer. No poison can kill it. Any hope for a cure is for the future. Not for our children now. Can you really imagine a body having been ravaged by thousands of seizures, muscle wasting, ICU myopathy, dependence on drugs, extreme osteoporosis, a throat which hasn’t eaten in 10 years or ever spoken a word…do you really think there will be a magic bullet cure that takes this body and makes it normal? Would I even want that? The lifetime of pain, rehabilitation and disability this would bring? Trading one unworkable situation for another.

Better the devil I know than the devil I don’t.

This is bargaining, my darling friend. Rather than accept that she’s different, single-mindedly focusing on anything you can do to change the outlook. Desperate to reach into the very fabric of time and pull something into the present which doesn’t exist (a cure).

All of that will be a painful read. I don’t blame you if you’re disgusted. I’m disgusted too.

Some people reading this will be too early in their walk. Others will wish they’d heard that sooner. I cannot control who is reading this and when. That’s up to the universe. Maybe this site won’t load for the people who aren’t ready to see this. Stranger things have happened. But I so wish that someone gave me the permission to be ok knowing all that earlier. To gently take the weapons out of my fists and let me fall apart and move through bargaining and the anger and the denial and the depression. I had to wrest that permission from the hands of god-knows-where and give it to myself as a gift. And THAT is the serenity to accept the things I cannot change.

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The best therapy program for Rett parents

If you’re suffering with your child’s diagnoses (and really, who isn’t?), the greatest gift you can give to yourself is coming to Orlando and attending a P3 weekend. It’s like months (years?) worth of therapy in one weekend. I have never moved through so much pain so quickly and with so much support as I did on that one weekend.

Many people travel from other states to attend.

Having gone through a lot of different counselors and therapists, I can tell you that P3 is singlehandedly the most effective program that exists for dealing with the pain of life. If you decide to do it, tell me and I can be there for you as an “angel” if you want. They know about Rett syndrome because of me being in the community and they also support my oldest son in the adult program, however there are also P3 weekends geared for children.

P3 happens every 6 weeks

It’s not cheap (about $600) but far cheaper than the years of counseling you’d spend to achieve the same results. There are scholarships you can apply for if money is a challenge, and I would highly recommend fundraising for this if you need it. Because our daughters need us to be healthy. Self care is a gift you give everyone in your life.

If I ever had the energy to be in the charity world again, it would be to raise funds for the Rett community to access this kind of emotional and mental health support.

⬇️⬇️⬇️

www.orlandop3.com

⬆️⬆️⬆️

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I’ve been afraid of all the wrong things

Grace is in the ICU in critical condition with aspiration pneumonia. And I did NOT see this coming.

All this time, I’ve been afraid of the wrong things. I’ve been afraid of the seizures. Bracing myself for her next bone break. X-raying her spine every 6 months. Testing her for heart conditions she does not have. And I thought I had this respiratory thing under control because we got her feeding tube as soon as it as apparent that she was aspirating her food. I checked aspiration pneumonia off the list of things to be afraid of.

And then last Monday happened.

Grace got the RSV virus. A common cold. Would give you a runny nose. But for babies or immunodeficient people, it’s more serious. So she had a wet cough. And we expected that at some point (as usually happens) she would choke and gag on her phlegm, have a great big but super productive puke session (which we would catch in a towel) and be clear of all her congestion.

And she did choke and gag on her phlegm BUT it happened in bed while she was laying on her back (before we knew how sick she really was) and she aspirated that vomit into her lungs and instantly was in severe respiratory distress. She was passing out, couldn’t breathe, eyes rolling around. We bypassed the ambulance because they take too long. Although it’s not the closest hospital, we rushed her to Nemours. She quickly went from oxygen to BiPaP to intubation and she’s been this way for 7 days. Her diagnoses are RSV, aspiration pneumonia and ARDS (acute respiratory distress syndrome). Add to that the ICU myopathy which happens when you have long admissions in the ICU undergoing multiple procedures with many different medications, sedations, periods of paralyzation.

The outlook is hard to process. There were definitely days last week where we had to face low survival rates (her level of ARDS one particular day put her at 50%) and we’re not even talking about extubation yet (removing the breathing tube). Sometimes this stuff leads to tracheostomy. When she’s done here, she will likely go to a rehab unit. She will definitely not be home for Christmas. And we will be adding quite a few new pieces of machinery to our lives. All of this happening just weeks before our new health insurance kicks in. I’m stressed TO. THE. MAX.

But back to that fear. And being afraid of all the wrong things. When Rett girls die, I go on a hunt to figure out why. To check the boxes that read “things you should be afraid of”. People rarely say “this is why my daughter died” and so I dig through photos, blog posts, social media…anything they had put out about their daughter. Did she have a bone break leading to a blood infection? Did she have one massive, gripping, seizure? A spine surgery gone wrong? Long QT syndrome? The pneumonia ones didn’t scare me. She never had a chest infection again after getting her feeding tube. I was in control of that one. Except that I wasn’t. And you know what? Lower respiratory infections are the leading cause of death in Rett syndrome. And I didn’t know that until now.

So now I have all the questions. Should we let her go to school anymore? Should we shield her from germs, from crowded places, from ourselves? However, I have this nagging suspicion that whatever I do, I will never be in control of this.

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