02/20/2026
I’ve been having a hard time accepting
“ Our New Normal “ Lately,
Whatever that is really,
Why one should have to just “ accept “
All the stuff Toby struggles with everyday, is just “ Hard “ sometimes.
You know everyone, I stay humble, I stay educated to Tobys medical struggle s,
I stay Positive, I find as much light in a dire situation as possible,
But I still am only human.
I have moments of hiding my sadness.
If I go outside our little circle of
Doctors, therapists, nurses which our friends, our normal,
Speaking a word of what Toby lives with on the outside of this to someone,
Oh how eye opening, unfortunately,
It is. They just dont understand.
If one has never met Toby in person
& all they here is what sweet Toby boy lives with day in & out, his diagnoses.
I’ve heard a lot of scenarios, but
Pretty much all pointing to,
“ End of life “ stuff,
I feel sick even typing that, as that’s just not the case.
I always quickly respond with,
You just have to meet sweet Toby,
And see all the smiles, the accomplishments he has achieved
and all the love he gives.
Yes he’s a Miracle, but most importantly,
He’s loved and not in pain & Happy in his
“ Toby world “.
Yes it definitely is different,
And yes I would absolutely be ecstatic,
If Toby could get up and walk,
Maybe Even say a few words, enjoy a meal “all by himself “ by mouth.
I remember how extremely sad i was,
Back when Toby was like 2
Being told, I would
“ Never Hear Toby speak “
I don t know why that tore me up inside for a long time back then,
I mean, its not speech with his mouth,today,
But Toby has so many other ways he communicates with me.
Ill have to post some video’s of what i mean later, its so awesome and beautifulhow Toby shows
“ Tobys ways “.
Another silly little thing in the earlier days,
I always wanted Toby to be able to
“ Walk “ onto a ride at Disneyland,
Idk why thats so meaningful to me,
Maybe Tobys “ Eyes “ were telling me he wanted to “ Do just that “
Im sure it drives others crazy around me,
But I “ try “ to do just this,
When it comes to a simple pony ride,
Or whatever ride it is,
Ill unhook him from all his tubies,
And step with him to that pony ride
And make it happen,
All eyes on us, it doesn’t matter.
But anyways,
Our experience usually is
everyone looking at us
While, Toby boy is trying so hard to control his involuntary movements,
to just be accepted , i suppose.
-Tobys “ Toby “ -
I wish our world would just understand,
to be kind, to include us, to invite us to whatever,
( even if were not able or its hard to )
or say hi.
It would mean so much, to families like ours.
Anyways, enough of my ranting,
And im not! In no way, trying to stay in this negative space,
I try every day to be positive,
Even if its just looking out for our “ smiles of the day, “
but you all know that 😃
See what a few sad comments or chats on the outside world, with a medically fragile, special needs parent can do sometimes,
We are only human,
Once in a while,
( for me ) I can’t always filter out the harsh stuff one may say.
Please know,
Special needs,
Medically fragile,
Are trying so hard
To be accepted,
All while being awesome,
I have quite a bit to update on our Toby boy and little to add on sweet baby Hunter and i promise too this weekend.
Be, kind and courteous, Im liking the word, autodidact.
For one kind word, can do wonders ,
Happy Friday everyone. all your prayers,, love support and comments truly are amazing,
Maybe this message will be shared,
Will be heard, I know it’s my little rant,
But it would be so impactful,
If some of our world,
Who lives the normal life ,
Just Understood, idk.
Anyways sending hugs from us all.
