I totally get that
A relative came by this weekend and mentioned about how sometimes my child’s disability can just go away as they grow up.
It cannot.
I held it together pretty well considering.
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Please accept this award for your restraint 
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I am so sorry to hear all these stories of struggling friendships.
I want to send a few internet hugs to you all. 
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Ha!
Yes, my mother-in-law just gave us a gift with a note saying hopefully it will help “cure” our daughter.
I don’t know if my wife gets the restraint award for that one?
We did expend the energy to explain that a) you don’t cure cerebral palsy, b) yes, we always hope she will gain more mobility and independence but that is not the purpose of her life nor is it something she needs. She is already enough. She is already herself and she is enough.
I can’t say it. These men can.
“We may scratch ourselves raw to erase the image we were made in
Smoke, snort, sex or drown out the silence
We may waste our life-savings on makeovers
To try to rhinoplast our daddy’s nose away
But no nip, no tuck could cut away the sense of obligation
We are becoming what we’re not
But what we are is inescapable
You are a masterpiece fighting to be a silly selfie with a hideous filter
You are heaven’s handmade calligraphy
Slumming it among papyrus fonts
You are the complete and perfect works
Of a perfect and eternal poet laureate”
-Propaganda
" All I wanted a perfect life
Some perfect kids and a perfect wife
Some perfect days and some perfect nights
Even though I’m flawed, I should be alright
A child with special needs didn’t fit in my plans
I’m a needy man, wanting more that what you put in his hands
All I wanted was a perfect family core
Now I’m envying the family next door
Trying not to trust therapy more than God
I am walking the street where fear and love collide
I am learning in weakness, you still gotta serve
And my connection with my boys is way deeper than words
But damn, words, I thrive with 'em
Words are my life, my career, I survive with 'em
I’m given a life sentence that words can’t fix
Now we both live in a world that don’t make sense
Maybe words don’t say much
Maybe we don’t need words to communicate our love
My sons are not a punishment or an accident
Just a little abstract masterpiece of what the Master did
I try not to doubt the power of prayer
But many times, I just feel like the power ain’t there
Some days I’m feeling good, some days I’m feeling torn
I’m getting praise for activities a father should perform
I get applause when I excel, thank you
Is there grace for me when I fail and I’m feeling shameful?
Truth is your presence speaks much louder than when a choir sings
I never knew I’ll find joy up in the smallest things
The counselor said “Live long, love strong, stick together
This is a thorny rose you two will carry forever
Find value in your interactions, and not in your treasure
Find strength in Jesus, increase your faith in good measure
Avoid evil, your kids need a home that is peaceful
Don’t be a passive man, understand that your family needs you
Pray for healing, hoping they find a cause”
But after all, I resolved, you are not a problem to solve
Maybe I wouldn’t change you
Maybe I’m just unable to see your potential
Because I’m blinded by the labels"
-Sho Baraka (two autistic sons)
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I don’t want to speak out of turn here, since I haven’t been part of this community for super long (a bit over a year), but don’t apologize for sharing some heavy stuff here (Lord knows I have). Sometimes it just… needs to come out, and just sharing can help to lessen the mental strain a bit.
And if I can contribute to lessening that strain, even indirectly, even minimally, why, it’s an honour to do so.
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That sounds like a forum title if ever I heard one….
(Happy to remove if unwanted.) 
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I shall wear it with pride!
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Thank you so much for saying that. My anxiety and depression are using the things like that which might might seem like a mild thing and using them as validation for my lack of self-worth right now.
I haven’t posted on here lately as much because of it.
I have been struggling a lot. And I am actively seeking to help. The American system is very lacking, and slow.
I know I am extra sensitive on the subject because of the particulars of how father ghosted me when I was 15.
Funny thing is where I mentioned snoozing fB feeds, the person wasn’t someone I had.
If I’m honest with myself, the friends who have drifted away have because I stopped hosting all the time and inviting people over and cooking for all the people.
With the complexities of disabled children I couldn’t. I started telling people let me know when they were available to hang out. And crickets.
Which I know just shows that they were not friends with me for the proper reasons. But it does add to the total isolation feeling of having disabled children. And anxiety and depression are not going to tell me that. It’s going to tell me my own father didn’t want me. Why would my friends?
(Which give a high five to my other peeps up here who know those complexities I speak of)
I’ll take all the hugs I can get
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Sometimes there are these extra shitty days and if this is an additional space for you to write out your worries and unburden a little, I for one am here to listen. From my own experience, I know how sometimes writing out something to others can be helpful in itself.
There is a saying here „Geteiltes Leid ist halbes Leid, geteilte Freude ist doppelte Freude.“ (Shared pain is halfed, shared joy is doubled).
It seems like you have been having a really tough time with the kids for a while now. I really wish you all the good things and that hopefully in the near future things will at least settle a bit.
PS people that ghost you by blocking you on FB… not worth another thought -.-
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Thank you, I appreciate it.
And I know that’s true.
I know things hit harder right now. It was also the same day as our last appointment with our children’s psychiatrist. She is been dependable and consistent and that is hard to find. In general I’ve been struggling extra as the way things went down with the kids have left me feeling like I failed to protect them. Which is like the one thing I am supposed to do. I know that is common for parents to feel.
I have an appointment with a therapist to hopefully help navigate these feelings.
I am having a better day today. I even got to sleep in.
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I feel a bit bad about the juxtaposition here, but in consecutive days we’ve booked to go back to Disney World in 2024 and I’ve just bought my final block of shares in my company.
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We need to shift “Invisible Megakraken” over to “The Carnegie of Wales”
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Maybe “Carnegie of Whales” to keep the oceanic theme…
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There’s fablas! 
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Wasn’t that Onassis??
I feel like rage-quitting something today. I almost threw a stack of papers out of the window in any case.
The German healthcare system is the least digital in the world, I swear.
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The us probably would give you a run for your money. Things starylted improving a few years ago, when the federal government required claims to be submitted electronically, which means everyone has electronic records (private insurance companies followed suit, so unless your only patients are paying cash, you have to do it). But they’re not often available to patients electronically, and the transfer between doctors offices is not always electronic (they don’t want to set up secure electronic exchange, so much is sent via fax. My wife used to work in a nursing home, and getting records for patients who came from a hospital meant they might fax them to you, but usually they printed double sided, and the people who working the fax can’t handle scanning both sides……
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the app for my health insurance introduced a fax function a couple years back to much ridicule… 
encryption is too difficult to set up for doctors offices. so they made devices that were supposed to handle that but they forgot to built in ability to renew or exchange certificates and by the time the first doctors were ready to use it the certificates had expired. 
so new devices had to be made and… I could go on.
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A few years ago the UK’s NHS was the biggest purchaser of fax machines in the world. And to be fair if you’d seen the horrible tech they get offered to replace it every few tears…
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