April 19, 2024 • 43 mins
The episode paints a vivid picture of Cindy's ongoing plight with her brain injury and Maurice's ceaseless commitment. It typifies their undying perseverance, sacrifices, and relentless pursuit of recovery amidst the convoluted and onerous challenges they face. Cindy's transition to a more specialized rehabilitation facility sows seeds of hope and expectations for her enduring improvement and recovery.
We embark on a journey through Cindy's arduous rehabilitation process, marked by innumerable hardships but also small victories. With the infliction of diplopia, shoulder subluxation, and tightened ankles, her path to recovery lays riddled with roadblocks. Yet, her resilience and the unwavering support of her family reveal the power of love and dedication.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:02):
So welcome to episode five now the
last episode as i warned you before it
was very heart-wrenching and we've
come to the final days of eltac for cindy she's
going to be moving facilities and maurice is making all the
plans and we're going to pick up right here but
before we get into that i'm just going to ask you real quick
(00:24):
about the last episode and that is the i
don't know if it's an accusation by cindy about sodomy
but what makes you so sure that it
possibly didn't occur that's a good question but i i think just time and time
of how she's being handled and managed by you know texts or nurses i can see
(00:49):
how she might interpret it because they're very aggressive her,
in being quote-unquote abusive in some ways.
And so remember that she is at the beck and call of everybody.
She needs help. She needs someone else to do it for her. She's bedbound.
(01:11):
She has to be turned every two hours. She has to be wiped down.
She hasn't had a shower for months, right?
That's probably at this point a couple months now. So she gets wiped down and,
you know, she's lost all privacy in that sense.
And it can be very uncomfortable because she is also hooked up to,
(01:34):
you know, multiple wires or tubes.
And just the shift, the little subtle movements is jarring for her.
She gets, she starts to have coughing motions, coughing fits,
and she starts coughing blood.
And then she has to be, you know, kind of settled down.
(01:56):
And so part of it is like when you've
got the catheter and you're having to drain
that every so often because it you know it reaches capacity or something like
that so you're gonna have to and you have to wipe her and the catheter and i
don't want to be too graphic anybody knows knows it's an insert you know to
(02:18):
kind of drain everything you have to sometime hygienically keep things clean.
And so because I'm there all the time and I have somebody there all the time,
if there was any abuse, we call it out.
And the moments that when she does get cleaned up or has a, I forget,
(02:38):
washed up, wiped down, I do give her privacy, but generally friends,
I ask to step out, but I can say there are close family members like her sister can be there, her mom.
And we're there to kind of monitor. So, but, you know, I think it's a gray line.
(02:58):
It's anybody who's doing this job, anybody who kind of performs a role of caretaking.
Doesn't, it's not, I don't think you get really enjoyment out of that.
Not at least in my view. you so
it was just very shocking
(03:19):
to hear but also understandable and i you know i i always i obviously assured
cindy that not on my watch if i i don't think that you were abused in that way
and i know it's hard to be in this position was she assured by it,
(03:40):
Was she assured by it? Did she convince herself that, yeah, Maurice is probably
right, that it didn't happen?
In her mind, she thought what she thought.
And during this period of time, a lot of what I talked about,
you know, with her yanking the lines and I'm trying to explain to her why you can't do that.
(04:02):
This is keeping you alive.
Just her able to accept the process that, you know, she's just shaking her head.
It's either a gap in processing or a blip where she just is not connecting or
looking at things from a certain context.
Now, I'm not dismissing everything she says at all.
(04:25):
I mean, the story, the incident with the gastro surgeon and what happened there,
I totally believe that's what what happened but
do i believe that they you know were intentionally hurting
her no i don't i do think
that there's miscommunication because she couldn't speak and they couldn't recognize
(04:49):
or identify that she was in pain and they thought she was just fighting them
off and didn't want this and and eventually through you know sydney what she
told me was i was fighting for my life life,
they were trying to hurt me.
And that was her perspective. She said that to me in sign language and I had to make sense of it.
(05:14):
And so I can understand how in her position,
how she feels and how everything is stacked up against her and people are trying
to hurt her and stuff like that because she's in a very hard position to be in.
And I have faith that because I've been there, and when you have an advocate that's there.
(05:42):
Often more than not, people tend to do a better job, and they're not going to
do something to hurt somebody or neglect them.
I mentioned when I was gone for two hours something happened right but had I
been there it would not have happened so,
(06:04):
Yeah, so that's what I think about that situation. It's sad to hear.
And I'm trying to recount some of the other incidents where,
again, this is kind of like an open door where now we're communicating.
And so she's kind of signing a lot of different things.
(06:24):
And I'm discovering what she's thinking in the case of that and some of the
other incidents. So, okay.
Well, let's just say we could always double back if you remember a certain incident
that slipped your mind. So that's not a problem.
So these are the last days of LTAC. You guys will be looking for a new facility.
(06:48):
Where do we pick up from here? Right. At the LTAC, she's getting more medically stable.
She is able to breathe on her own.
She is still on a trach, but she doesn't require a ventilator.
And she also has a catheter.
(07:11):
And so my hopes were, before we leave this place and move to the next,
that she would be decanalated and be able to go to the bathroom without a bag.
Well, could you explain real brief for us non-medical people what decanalation is?
Yeah, decannulation is really removing the trach, the tube, the fitting that's
(07:37):
inserted into your trachea.
So it's that tube that she ripped out. Yeah, yeah.
She's not hooked up to the ventilator, but she does have that fitting still
there because she has to have a reliable way to protect her airway.
She's progressed to a point where she doesn't have the tube that's connected
(08:00):
to the ventilator that pumps air into her trachea.
It's not quite capped off, but now she just has that fitting there,
but the tube is not connected, and so she's progressed on to that point.
But decantilation is removing that completely
and covering it up more or less with a bandage
and your body that's a lot of
(08:23):
cartilage your body will over time seal up
that hole the whole seal up most places
rehab centers are it's it's difficult for them to accept people with trachea
some do the great the bigger programs do but some of them don't have respiratory
departments the respiratory resources that are trained to be able to handle trachs.
(08:50):
Fortunately, you know, as much as I pleaded to stay here a lot longer,
the doctors and the team felt that the longer we stay here, the longer we take away her rehab.
And rehab is a very important, a crucial point, a crucial...
Point to her recovery. Because every day that you don't do something,
(09:14):
you don't build a new plasticity, you don't exercise, you don't perform therapy,
is a day that you're not attempting to connect the neurons and building new
connections to your extremities to act upon,
to get your full faculties back.
And she's been there for a while. I guess it might have been like five or six weeks.
(09:36):
So we moved on to the next step. As a planning process, I had to tour several
facilities, find a program that fit us, that fit our criteria,
such as overnight stays,
how flexible they were, how big was the program,
who's the doctors there, what is their statistics, and I found one.
(09:59):
So at this point, I kind of orchestrated.
They arranged, the LTAC facility arranged transport to the next step,
which is an inpatient rehabilitation center.
That's where she was going to stay overnight.
That's where she was going to get more intense therapy, four to six hours of therapy.
(10:19):
From the point she wakes up until midday, generally from nine to three,
somewhere between there, four to six hours therapy.
So what does this therapy entail?
Therapy for her, for TBI patients or traumatic brain injury patients,
(10:40):
neurological therapy usually requires three disciplines, three core disciplines.
Occupational therapy, speech therapy, and physical therapy.
There's other therapies there, but that's the three core ones,
because when your brain is affected, all those three disciplines are also affected as well.
(11:02):
So physical therapy is gross motor movements.
Occupational therapy is, you know, sort of fine movements, daily activities,
functional stuff that you can do.
Speech therapy is cognitive as well as swallowing and speech.
So, yeah, that's the important part. So when we arranged the transport,
(11:26):
they sorted out a, I think it was an EMT transport because she was not decanalated.
She still had to have somebody who was equipped to handle her in that situation
and she still had a catheter and whatnot.
(11:48):
Whatnot, we were transported by means of that to the inpatient rehab.
Now, the reason I mentioned that is through no fault of my own,
they arranged it, but that transport,
a drive from maybe the suburbs to downtown is really more or less maybe like 25 miles. that you.
(12:18):
Right there cost me $4,000. Yeah.
And I know that's a whole nother can of worms that me and you went through in
real time when you got me on the phone.
And I do believe we will touch upon this again, but as of now,
let me just rile you back down.
And okay. So Cindy's at the new facility to get rehab.
(12:40):
And let me just ask at this point, how has, how much has Cindy progressed?
Because Because I'm kind of losing how much she could do at this point.
I know she could sign language.
I know she can make thoughts, right? Her cognition is getting a lot better.
But in terms of physical, how much has she improved at this point? Right.
(13:05):
So she, because she's not decandid, she can't really speak yet.
So she's not able to speak. She's able to sign.
She's able to nod. She's able to shake her head. she has
some movements of her right arm really her forearm
and her wrist the dexterity is not quite there yet she is not able to move anything
(13:28):
else with strength she can't stand on her own she's wheelchair bound well not
even wheelchair bound she's not even wheelchair ready yet,
she's just been bed bound for the most part I think that was really it I mean
she made improvements it was a stark improvement from just being comatose for
(13:54):
so long to that was remarkable,
but more to come.
That's more or less all she could do and in this next place that we're at is
going to really test her.
It's really going to challenge her. It's really going to push her.
(14:17):
So she had to build up her tolerance and she was accepted into the program.
And so, yeah, we're hoping that she's going to make strides quickly and more
rapidly in a facility that is designed to do just that.
(14:38):
And I mentioned this before, that every step you take forward is a step back in something.
And what I mean by that is that as she gets discharged from one place to the
other, that means that she's medically getting better and better and better.
And then what's intensifying is the other aspect. So her rehab is kicking more
(15:05):
in as her medical needs are kicking down or kind of like tapering down.
So that's a good thing, right?
But again, she's still at a quote-unquote hospital here.
It's an inpatient rehabilitation center, but it is also a hospital.
(15:27):
And the big hospital is just right next door as well.
But this is the next phase of our journey.
And so at this point, on intake, they assess her.
They do a soft estimate of how long she's going to be there.
What team she's going to be on what she needs they test her her vision her movements everything,
(15:54):
and they build a plan which is which
is completely different from the other
place it was at because it was more about keeping her alive and here
it's it's trying to find a way to
have her thrive right so so here
now it's okay well and
(16:15):
i said that there's still a hospital there's still
a hospital so the current state of cindy medically is that she still has to
have a blood draw almost every single day and sometimes that means that she's
depleted and her blood and she needs blood transfusion because they're checking
her inr so when you're in a hospital you don't really pick
(16:37):
a finger or you don't kind of test your blood, like maybe diabetes,
they just do a whole vial of blood and they go test it and then they come back
and then they dose her with the appropriate medication to keep her therapeutic
as far as her anticoagulation goes.
That was difficult in itself because Sydney's a small girl and every single
(17:01):
time you have to find a vein and you might not be successful you get pegged
once twice or three times every single day trying to find a vein.
Just to draw blood and she's on
the feeding tube so she's getting
more food but that's also upsetting her
stomach so there'll be days where she can do therapy or or she missed a session
(17:24):
because she had a side effect to the formula they used or it was drawn too quickly
and she was too full and she vomited.
But the...
The relieving thing for Cindy was this was the first time she was ever going to get a real shower.
(17:52):
Because they would get a shower chair, transport her, and have somebody just bathe her.
Whereas prior, she would get wiped down.
Get some wipes, kind of wipe you down. and so
in the couple months she had
had a good shower and i think she started
(18:16):
to become aware of that did she get excited oh yeah yeah i mean we were excited
it's like you know we were excited for her like yeah let's give you a real shower
you're you know she had surgery right and so So her hair had gunk in it.
They did a, I think it was EEG or something like that to check for brain activity
(18:39):
at the ICU to see how if there was,
they did a study there and there's all this gum and gook that's in your hair
because they put probes all over it, but you don't have a shower,
right? And you're just wiping it down.
Then also because of the surgery, there's blood, residual bloods in your hair and your body.
And so we were excited for that because then she meant that she would be more clean and fresh.
(19:06):
And it also metaphorically was like a sign of cleansing for us.
It was like, okay, you know, that's just.
So, yeah, I mean, and then at this point, we're also doing, you know,
she's working on speaking again because, oh, let me loop back.
She did get decanalated.
(19:31):
She got decanalated before I take that back. She did get decanalated because
we're working on her talking again. Wow.
So we're doing trials at the new place here, trying to build up.
Therapy is about building your best support. She's trying to talk again.
She's coughing. The words are not quite going there.
(19:52):
And so we were, you know, with speech, we're just attempting to say stuff.
And I think it was one moment where I was just taking pointers from or guidance
from some of the speech therapists and their kind of strategies and techniques
as they were describing to Cindy what to do.
(20:15):
And during the inactive sessions, I would kind of work with her.
And I think I worked on her saying, hello, you know, like, can you just take
a deep breath and just push it out?
Hello, hello. And for a long time, she couldn't do it, but that was kind of
the baseline for me. And then I think it was maybe her mother was there or maybe her sister was there.
(20:40):
Somebody was there and we both heard a faint hello.
That was, wow, she's going to be able to talk, hopefully.
I mean, it wasn't immediate, but it was faint, too.
You can hear it held low or something to that sort.
(21:03):
That was another highlight. Now, it wasn't their imagination, right?
She really did let out a hello. Oh, yeah, without a doubt.
She was pushing hard to get it out.
You can only imagine that she's been stuck speechless for a couple months,
(21:26):
more than a couple months.
And now, so whenever you get decanalated what happens is they kind of close
off and put a cap there and until it heals,
air when you breathe and when you say something can leak out of your throat
because it's just gauze so you're not getting a full breath support to push
(21:47):
and make these proper, form these proper words.
So it kind of just takes time as she starts to heal. So she was desperately trying to do that.
And the funny thing about that, and if I can call it funny, was that she had
done sign language so long that she wouldn't even try to speak. She was just signing.
(22:08):
I'm like, no, you don't have a trach anymore. You can try to talk now.
In fact, you need to try to talk because we don't want to rely on sign language.
You have the you're free to
now work on speaking again
talking because that's what we
want you to do and so i had a reminder several
(22:30):
times and it was painful sometimes for her because i tell it it took a lot of
out of her versus signing she got accustomed to just signing and she got and
i got accustomed to really you know fully talking to her through the form of
sign language but I had a constant reminder.
Don't use that as your crutch just come back actually use it as your crutch
(22:54):
but here what you need to do is just talk to me every chance you get.
So that was a highlight in the journey as well that must have been an amazing
feeling yeah I told you I would call her phone and listen to her voice because
(23:15):
I hadn't heard it for so long.
I would hear it in my dreams, but in reality, I hadn't heard it for so long
and I didn't want to forget.
And so it was a major relief and inside I was amped up. I was like, okay.
But I also became impatient because nothing could ever come soon enough.
(23:36):
It was just slow progressions, minor steps, it is very true everybody that tells you when you go through.
An injury like this, that it's not a short-term thing. It's a long haul.
You're in it for the long haul. You be prepared to be in for the long haul.
It's not going to be like a flip of a coin and the next day,
(23:58):
you know, it's like your bones are healed and you can walk and run immediately.
It's the long haul. It's preparing mentally and physically to be able to handle this.
And, And, you know, that is the truth.
You know, I'm here today and I can speak for the past year and a half to almost
(24:21):
two years to the anniversary in a few months that we are still in it. And it's a long haul.
You have to have perseverance and resilience to be able to do this.
And that is the part that I've discovered about myself. You know,
I always sat on the other side.
If this had happened to me to some someone else
rather i'd probably say man you're i don't
(24:44):
know see how you can handle it but when when it happens to you you just get
it done i am amazed that i thought i would have fell flat and try you know die
trying but i the the human spirit Spirit is a very strong thing.
You know, the love and the tale of, you know, dedication,
(25:10):
devotion for your family, for the people you love is a very strong thing.
And that's got me through a lot of this and we're still going.
But yeah, we still have ebbs and flows.
(25:31):
And here now, we're probably going to be here for a little bit longer than where
we were at the LTAC because we're working on having her recover as much as she can.
And so what does every discipline look like? So I'll talk talk about that a little bit.
(25:52):
She had... We discovered that she had... Actually, I think...
She never expressed or told me some of the things that she was going through,
but we had discovered through doing some vision tests in the clinic at the rehab
center that she was seeing double. She had diplopa.
(26:14):
I think that's what it's called.
She was seeing double vision. So I was like, oh my gosh, really?
So there's some things that you cannot even quote-unquote see,
and she was experiencing difficulties with.
I can see that she can't walk. I can see this and that. But now it's just figured
(26:37):
out. Wait, you're seeing double?
Is that a result of the actual brain injury? Or is this just out of left field?
That's because of the brain injury. Wow.
Because leading up to that point, you don't have trained people or she was not
seeing a neuro-optometrist, if you will, to kind of recognize whether she had any vision impairment.
(27:03):
And now in the rehab center, as part of the assessment, she's going to vision
clinic, I discovered she was seeing double.
And I asked her, like, you're seeing double?
It's like, oh, gosh, just keep stacking it. You make progress and then you kind
of take a couple steps and take a step back, right? It's like, oh.
(27:28):
Now, what does it mean when she has double vision? Well, certainly it means
that it's hard to read things. It's hard to see you to a certain degree.
Because if she's seeing two of you and she's trying to focus,
it can also cause headaches.
Because, you know, it's a trickling effect in multiple aspects, right?
So she was fitted with prisms, glasses to kind of merge, converge the vision into one.
(27:58):
And so certain gazes she had, she was seeing double vision, but worked that
over time. So there's that.
Physically, we're just, physical therapy, we're just working on gross motor
movements, trying to move your arms, your legs, just kind of build strength.
(28:18):
And it was here also because of the assessment and physical therapy that we
discovered that she had a shoulder supletion, which is a deficiency.
Maybe it's because of the lack of muscle tone through the lack of use while
she was in bed for more than a couple months.
Once, but she had a limited range in her left side, which was the left side
(28:44):
was the side that was impacted due to her brain injury, her left arm,
her left leg, her left hemisphere.
So we had to work on that because she didn't have full range of motion. She had to wear.
And then we found that she had tightness in her ankles because she's been bed-bound.
(29:08):
When you're bed-bound and you're not moving around, you're not applying weight
to your heels and your ankles.
So that means that your ankles are going to get tighter.
So now she couldn't, even if she could stand up on her two feet,
they were so tight, the The flexibility of her foot was not all there.
(29:32):
So she would not step in an orthodox manner from like heel to toe and her gait
movements, which is her strides, her mechanics of walking was not all there.
So she was having to learn all this stuff, remember all this stuff and also physically be limited.
So there was that to deal with that we, you know, we had to continue to stretch it out.
(29:52):
We had to even, they built a cast for her leg so that it would stay in one position
that you can, you can move the cast and you can put on the cast every night.
It was kind of one of those things where it was retrofitted to keep her heels
in a certain position so that she would get that flexibility where she was not doing anything before.
(30:16):
In speech that was just working on eating.
So she has dysphagia and that's really a swallow deficiency.
She has facial paralysis, some type of...
Part of her face is numb. And when part of your face is numb or part of your
tongue is numb, you're going to have swallow deficiencies as well.
(30:38):
You know, we were seeing ENT to check on her vocal cords. You know, she was...
Aspirating when trying to eat or drink food.
And I just realized I skipped so far ahead. But there was, while you're on a
feeding tube, you can, since you are now decanalated, you can,
(31:01):
at a certain point, start to take things orally.
Because there's nothing in the way.
There's no leakage. I mean, obviously, her wound has to clean up and patch up and kind of seal.
But because she's decanalated now, she can kind of do trials with real food.
(31:22):
And so she was on a puree diet.
Because she had dysphagia, she couldn't really reliably swallow.
They were testing her, doing trials with her to kind of eat puree foods.
But her main nutrition was from the feeding tube.
And, you know, speech, we're just doing these exercises to build breath support,
(31:44):
to be able to provide the foundation to say words, to give intonation, to pronounce things.
Yeah, in this place, it was kind of a breath of fresh air, to be honest,
because it was a different environment.
It was now we're doing active things. And you could see progress.
(32:06):
You know, as you describe these things, then there's Cindy's point of view for
all of this, and it scares me.
Like, if ever there was a day where she would actually want to describe,
I don't know if she will or she won't. I mean, that's up to you and her.
If there is ever a day that she would go back and we revisit all these times,
(32:30):
but in her point of view, I think my jaw will be on the floor.
I mean, you just telling me about her throwing up, her gasping for air and stuff
like that. Those are all nightmares, man.
And that will be something else to listen to.
I would say I'm looking forward to it and not looking forward
(32:52):
to it that sounds you know because we all
care about cindy and to hear her go through this for
that amount of time i think i'd have to pause the audio and take a breath i
don't know i just wanted to chime in that you know give a little perspective
i guess i i would say i would be celebrating the fact that she could do something
(33:13):
like that like i i would just tell you,
wait and see. Just wait and see.
Now, I also have a question. I mean, you call it a brain injury,
and technically that's an aneurysm. Is that right?
Yeah, there's different types of brain injuries you can have,
and they're all brain injuries, right?
She had a brain hemorrhage, which is she had a bleed, and they diagnosed it
(33:41):
as a spontaneous brain bleed.
What happens is that as you're hemorrhaging, bleeding, your brain starts to
swell up and there's no escape, that the blood is just building up.
And it's continuing to bleed. It's not resolving, not stopping.
And so that's applying pressure to sensitive parts of your brain.
(34:02):
And then that could result in stroke because, you know.
Okay. That's probably what I was thinking about.
Because when you said that the left side of her was pretty numb, right?
Technically paralyzed in a sense. as they try to, I guess, reform their connections.
That sounded like a stroke to me.
So there was strokes as well. Yes, as a result of brain hemorrhage,
(34:27):
there would be several strokes.
I can't remember how many they diagnosed there, but there are many strokes.
There are infarcts in the brain, which is like, you know, kind of basically spots of brain injury.
And so that just kind of, neuroscience is a very complicated.
(34:51):
The brain is complicated, right? But also the brain is a miracle.
It is the most. Yeah, it's amazing. You can't explain. Yeah,
it's amazing. You can't explain it.
That is the reason why no one can tell you can't do this or you can do this.
It's all, you know, discretionary
person it's it's it's a it's a case-by-case scenario
(35:14):
there's not like a a concrete
book that tells you you know it's not like you have a broken arm and you put
a cast and you know it's gonna be better this is like something's happened we
don't know but you can the brain can do amazing things it can stitch you back together.
(35:37):
That's the way you have to think I've learned to kind of like you know frame
my thoughts in a way where it's there's always going to be hope there's no one
has told me that she can't do this she can't do that right no one's no one's
ever said that thankfully they said we just,
don't know and that's as much as anybody would admit to and I'm okay with that
(35:59):
you know because I mean what would be better than that is like we do know right
We do know that you're going to get better, but no one's going to say that.
We're working every single day for that.
At this point, I've become more hands-on as well.
We're at a stage where they're training me to transport her from a wheelchair to the bed,
(36:26):
or the wheelchair to the shower chair,
and how to move her around, manipulate her a little bit, because we're entering
a phase or part of the journey where we're closer to home, even though it's
still far away, every step you're going.
And so you have to, the participation is increasingly getting more and more
(36:52):
on the part of family as they start to remove clinical faculties.
So I'm learning to do things for her. I'm learning to, I mean,
I'm sitting there trying to feed her.
I'm advocating for her. I'm learning how to do some of these therapy exercises
because there's carryover from what you do.
What you do during the day in therapy is what you do during the day.
(37:16):
But what really matters is what you do for yourself in your lifetime and who's going to be there.
Your family's going to be there. So now I am getting more engaged at this part of the journey.
I am trying to cook for her or whatever food I get for her, feeding her,
help bathing her, help do certain things.
(37:38):
And at the same time, I'm doing that for Hudson.
Hudson so again there's some
parallel similarities here in
multiple ways you know like just her growth and
Hudson's growth and me taking care of one
or the other to a certain degree they're very similar but I but there is a team
(38:00):
at the rehab watch because she's staying overnight and they're taking care of
her but I'm there all the time I have been there all the time and that was.
Just just draining to be able to to have to be in three different places you know I.
(38:22):
Part i eventually have to go back to work another
part i you know provide for family the other part is i have to
watch after cindy the other
part i have to watch after hudson you should be
amazed at yourself you should be you should just get that pat on the back because
what you went through and you've said as much that cindy does listen to this
(38:45):
and she finds she finds it fascinating right to learn about the aspects of what's
going on around her because she was trapped.
And if this doesn't show her how much you love her, I don't know.
She doesn't want to be loved, I don't think, if she doesn't see how much you
care and how much you gave up.
(39:08):
It's amazing, bro. As I did and tried to do everything, I did not do it all alone.
I just want to also say that I have my family and friends have been very supportive.
You know, I want to thank, you know, Cindy's mom, Cindy's sister.
They have been by my side every step of the way. And when I couldn't be with
(39:30):
her, they were there with her.
You know, when I was with her, they were there with my son.
And so, you know, it really takes a village to take care of somebody.
Like when they say it takes a village to take care of a kid,
and it's very much the same way in my scenario for the case of Cindy and Hudson.
(39:51):
It was straining difficult. I was only sleeping two hours a night.
And I don't think I've slept much more even now.
To be honest, I probably sleep three to four hours just because you're in there for the long haul.
Like I said, there's a lot to be done, and.
(40:15):
With the highlights of her progress and the feedback she's starting to give
back and the growth, the thriving of my son and Cindy, it gives me that little
bit more motivation, the edge.
This whole point of me talking about this is to catalog a time,
(40:37):
a memory in history where we can look back and remember who we are and where we came from.
And I think that there's some benefits to that. And I hope that other people
who can relate to this, not a lot of people are going to relate to this,
but I think a lot of people could find value in a situation like this.
(40:59):
It's a true story. This is not a movie, even though it sounds like it's ripped
out of one of the most horrible movies.
But Mo's living this in real life and
we're never gonna know what
he's going through what she's going through we're never
gonna know but if we could take that and improve our
(41:19):
lives a little bit I think that's what Maurice is really wanting from this
podcast if you could just like look at that sibling that you don't talk to that
much go give that person a hug tell your mom you love her I think that's all
I think that's all this podcast should do and it would have succeeded you know I I want to say that.
(41:44):
There's many nights, many times during this journey, I have felt alone.
It was just, I, because of that, what you said, I just like,
no one's going to understand.
You can imagine, you can put, you can empathize, but no one knows what it's
like to go through this unless you've gone through it.
(42:07):
And I felt very alone. You know, I talk to some friends or family and I try
to kind of explain, but then it's hard to, right?
Because in this podcast is to tell people who can't relate or people going through
the same thing that you're not alone.
(42:29):
I'm going through this. so together we are
all alone if that makes sense because i
you know when you're when
you're trying to get you're trying to go to a grocery store and you gotta you
know and it's raining outside and it's just you and you have to get the wheelchair
(42:51):
out you gotta transport one person and you gotta get the stroll out transfer
nerves and one hand you're carrying a child the other when you're trying to
push your wheelchair straight,
going up the ramp, and it's raining, you can't hold an umbrella.
Those moments are real. Those moments are when I feel I'm alone.
Because nobody can be by my side all the time. The struggle is real.
(43:13):
And that's just trying to go to the grocery store as a family,
because you don't want to leave anybody behind.
And you shouldn't have to.
So...
Music.
So welcome to episode five now the
last episode as i warned you before it
was very heart-wrenching and we've
come to the final days of eltac for cindy she's
going to be moving facilities and maurice is making all the
plans and we're going to pick up right here but
before we get into that i'm just going to ask you real quick
(00:24):
about the last episode and that is the i
don't know if it's an accusation by cindy about sodomy
but what makes you so sure that it
possibly didn't occur that's a good question but i i think just time and time
of how she's being handled and managed by you know texts or nurses i can see
(00:49):
how she might interpret it because they're very aggressive her,
in being quote-unquote abusive in some ways.
And so remember that she is at the beck and call of everybody.
She needs help. She needs someone else to do it for her. She's bedbound.
(01:11):
She has to be turned every two hours. She has to be wiped down.
She hasn't had a shower for months, right?
That's probably at this point a couple months now. So she gets wiped down and,
you know, she's lost all privacy in that sense.
And it can be very uncomfortable because she is also hooked up to,
(01:34):
you know, multiple wires or tubes.
And just the shift, the little subtle movements is jarring for her.
She gets, she starts to have coughing motions, coughing fits,
and she starts coughing blood.
And then she has to be, you know, kind of settled down.
(01:56):
And so part of it is like when you've
got the catheter and you're having to drain
that every so often because it you know it reaches capacity or something like
that so you're gonna have to and you have to wipe her and the catheter and i
don't want to be too graphic anybody knows knows it's an insert you know to
(02:18):
kind of drain everything you have to sometime hygienically keep things clean.
And so because I'm there all the time and I have somebody there all the time,
if there was any abuse, we call it out.
And the moments that when she does get cleaned up or has a, I forget,
(02:38):
washed up, wiped down, I do give her privacy, but generally friends,
I ask to step out, but I can say there are close family members like her sister can be there, her mom.
And we're there to kind of monitor. So, but, you know, I think it's a gray line.
(02:58):
It's anybody who's doing this job, anybody who kind of performs a role of caretaking.
Doesn't, it's not, I don't think you get really enjoyment out of that.
Not at least in my view. you so
it was just very shocking
(03:19):
to hear but also understandable and i you know i i always i obviously assured
cindy that not on my watch if i i don't think that you were abused in that way
and i know it's hard to be in this position was she assured by it,
(03:40):
Was she assured by it? Did she convince herself that, yeah, Maurice is probably
right, that it didn't happen?
In her mind, she thought what she thought.
And during this period of time, a lot of what I talked about,
you know, with her yanking the lines and I'm trying to explain to her why you can't do that.
(04:02):
This is keeping you alive.
Just her able to accept the process that, you know, she's just shaking her head.
It's either a gap in processing or a blip where she just is not connecting or
looking at things from a certain context.
Now, I'm not dismissing everything she says at all.
(04:25):
I mean, the story, the incident with the gastro surgeon and what happened there,
I totally believe that's what what happened but
do i believe that they you know were intentionally hurting
her no i don't i do think
that there's miscommunication because she couldn't speak and they couldn't recognize
(04:49):
or identify that she was in pain and they thought she was just fighting them
off and didn't want this and and eventually through you know sydney what she
told me was i was fighting for my life life,
they were trying to hurt me.
And that was her perspective. She said that to me in sign language and I had to make sense of it.
(05:14):
And so I can understand how in her position,
how she feels and how everything is stacked up against her and people are trying
to hurt her and stuff like that because she's in a very hard position to be in.
And I have faith that because I've been there, and when you have an advocate that's there.
(05:42):
Often more than not, people tend to do a better job, and they're not going to
do something to hurt somebody or neglect them.
I mentioned when I was gone for two hours something happened right but had I
been there it would not have happened so,
(06:04):
Yeah, so that's what I think about that situation. It's sad to hear.
And I'm trying to recount some of the other incidents where,
again, this is kind of like an open door where now we're communicating.
And so she's kind of signing a lot of different things.
(06:24):
And I'm discovering what she's thinking in the case of that and some of the
other incidents. So, okay.
Well, let's just say we could always double back if you remember a certain incident
that slipped your mind. So that's not a problem.
So these are the last days of LTAC. You guys will be looking for a new facility.
(06:48):
Where do we pick up from here? Right. At the LTAC, she's getting more medically stable.
She is able to breathe on her own.
She is still on a trach, but she doesn't require a ventilator.
And she also has a catheter.
(07:11):
And so my hopes were, before we leave this place and move to the next,
that she would be decanalated and be able to go to the bathroom without a bag.
Well, could you explain real brief for us non-medical people what decanalation is?
Yeah, decannulation is really removing the trach, the tube, the fitting that's
(07:37):
inserted into your trachea.
So it's that tube that she ripped out. Yeah, yeah.
She's not hooked up to the ventilator, but she does have that fitting still
there because she has to have a reliable way to protect her airway.
She's progressed to a point where she doesn't have the tube that's connected
(08:00):
to the ventilator that pumps air into her trachea.
It's not quite capped off, but now she just has that fitting there,
but the tube is not connected, and so she's progressed on to that point.
But decantilation is removing that completely
and covering it up more or less with a bandage
and your body that's a lot of
(08:23):
cartilage your body will over time seal up
that hole the whole seal up most places
rehab centers are it's it's difficult for them to accept people with trachea
some do the great the bigger programs do but some of them don't have respiratory
departments the respiratory resources that are trained to be able to handle trachs.
(08:50):
Fortunately, you know, as much as I pleaded to stay here a lot longer,
the doctors and the team felt that the longer we stay here, the longer we take away her rehab.
And rehab is a very important, a crucial point, a crucial...
Point to her recovery. Because every day that you don't do something,
(09:14):
you don't build a new plasticity, you don't exercise, you don't perform therapy,
is a day that you're not attempting to connect the neurons and building new
connections to your extremities to act upon,
to get your full faculties back.
And she's been there for a while. I guess it might have been like five or six weeks.
(09:36):
So we moved on to the next step. As a planning process, I had to tour several
facilities, find a program that fit us, that fit our criteria,
such as overnight stays,
how flexible they were, how big was the program,
who's the doctors there, what is their statistics, and I found one.
(09:59):
So at this point, I kind of orchestrated.
They arranged, the LTAC facility arranged transport to the next step,
which is an inpatient rehabilitation center.
That's where she was going to stay overnight.
That's where she was going to get more intense therapy, four to six hours of therapy.
(10:19):
From the point she wakes up until midday, generally from nine to three,
somewhere between there, four to six hours therapy.
So what does this therapy entail?
Therapy for her, for TBI patients or traumatic brain injury patients,
(10:40):
neurological therapy usually requires three disciplines, three core disciplines.
Occupational therapy, speech therapy, and physical therapy.
There's other therapies there, but that's the three core ones,
because when your brain is affected, all those three disciplines are also affected as well.
(11:02):
So physical therapy is gross motor movements.
Occupational therapy is, you know, sort of fine movements, daily activities,
functional stuff that you can do.
Speech therapy is cognitive as well as swallowing and speech.
So, yeah, that's the important part. So when we arranged the transport,
(11:26):
they sorted out a, I think it was an EMT transport because she was not decanalated.
She still had to have somebody who was equipped to handle her in that situation
and she still had a catheter and whatnot.
(11:48):
Whatnot, we were transported by means of that to the inpatient rehab.
Now, the reason I mentioned that is through no fault of my own,
they arranged it, but that transport,
a drive from maybe the suburbs to downtown is really more or less maybe like 25 miles. that you.
(12:18):
Right there cost me $4,000. Yeah.
And I know that's a whole nother can of worms that me and you went through in
real time when you got me on the phone.
And I do believe we will touch upon this again, but as of now,
let me just rile you back down.
And okay. So Cindy's at the new facility to get rehab.
(12:40):
And let me just ask at this point, how has, how much has Cindy progressed?
Because Because I'm kind of losing how much she could do at this point.
I know she could sign language.
I know she can make thoughts, right? Her cognition is getting a lot better.
But in terms of physical, how much has she improved at this point? Right.
(13:05):
So she, because she's not decandid, she can't really speak yet.
So she's not able to speak. She's able to sign.
She's able to nod. She's able to shake her head. she has
some movements of her right arm really her forearm
and her wrist the dexterity is not quite there yet she is not able to move anything
(13:28):
else with strength she can't stand on her own she's wheelchair bound well not
even wheelchair bound she's not even wheelchair ready yet,
she's just been bed bound for the most part I think that was really it I mean
she made improvements it was a stark improvement from just being comatose for
(13:54):
so long to that was remarkable,
but more to come.
That's more or less all she could do and in this next place that we're at is
going to really test her.
It's really going to challenge her. It's really going to push her.
(14:17):
So she had to build up her tolerance and she was accepted into the program.
And so, yeah, we're hoping that she's going to make strides quickly and more
rapidly in a facility that is designed to do just that.
(14:38):
And I mentioned this before, that every step you take forward is a step back in something.
And what I mean by that is that as she gets discharged from one place to the
other, that means that she's medically getting better and better and better.
And then what's intensifying is the other aspect. So her rehab is kicking more
(15:05):
in as her medical needs are kicking down or kind of like tapering down.
So that's a good thing, right?
But again, she's still at a quote-unquote hospital here.
It's an inpatient rehabilitation center, but it is also a hospital.
(15:27):
And the big hospital is just right next door as well.
But this is the next phase of our journey.
And so at this point, on intake, they assess her.
They do a soft estimate of how long she's going to be there.
What team she's going to be on what she needs they test her her vision her movements everything,
(15:54):
and they build a plan which is which
is completely different from the other
place it was at because it was more about keeping her alive and here
it's it's trying to find a way to
have her thrive right so so here
now it's okay well and
(16:15):
i said that there's still a hospital there's still
a hospital so the current state of cindy medically is that she still has to
have a blood draw almost every single day and sometimes that means that she's
depleted and her blood and she needs blood transfusion because they're checking
her inr so when you're in a hospital you don't really pick
(16:37):
a finger or you don't kind of test your blood, like maybe diabetes,
they just do a whole vial of blood and they go test it and then they come back
and then they dose her with the appropriate medication to keep her therapeutic
as far as her anticoagulation goes.
That was difficult in itself because Sydney's a small girl and every single
(17:01):
time you have to find a vein and you might not be successful you get pegged
once twice or three times every single day trying to find a vein.
Just to draw blood and she's on
the feeding tube so she's getting
more food but that's also upsetting her
stomach so there'll be days where she can do therapy or or she missed a session
(17:24):
because she had a side effect to the formula they used or it was drawn too quickly
and she was too full and she vomited.
But the...
The relieving thing for Cindy was this was the first time she was ever going to get a real shower.
(17:52):
Because they would get a shower chair, transport her, and have somebody just bathe her.
Whereas prior, she would get wiped down.
Get some wipes, kind of wipe you down. and so
in the couple months she had
had a good shower and i think she started
(18:16):
to become aware of that did she get excited oh yeah yeah i mean we were excited
it's like you know we were excited for her like yeah let's give you a real shower
you're you know she had surgery right and so So her hair had gunk in it.
They did a, I think it was EEG or something like that to check for brain activity
(18:39):
at the ICU to see how if there was,
they did a study there and there's all this gum and gook that's in your hair
because they put probes all over it, but you don't have a shower,
right? And you're just wiping it down.
Then also because of the surgery, there's blood, residual bloods in your hair and your body.
And so we were excited for that because then she meant that she would be more clean and fresh.
(19:06):
And it also metaphorically was like a sign of cleansing for us.
It was like, okay, you know, that's just.
So, yeah, I mean, and then at this point, we're also doing, you know,
she's working on speaking again because, oh, let me loop back.
She did get decanalated.
(19:31):
She got decanalated before I take that back. She did get decanalated because
we're working on her talking again. Wow.
So we're doing trials at the new place here, trying to build up.
Therapy is about building your best support. She's trying to talk again.
She's coughing. The words are not quite going there.
(19:52):
And so we were, you know, with speech, we're just attempting to say stuff.
And I think it was one moment where I was just taking pointers from or guidance
from some of the speech therapists and their kind of strategies and techniques
as they were describing to Cindy what to do.
(20:15):
And during the inactive sessions, I would kind of work with her.
And I think I worked on her saying, hello, you know, like, can you just take
a deep breath and just push it out?
Hello, hello. And for a long time, she couldn't do it, but that was kind of
the baseline for me. And then I think it was maybe her mother was there or maybe her sister was there.
(20:40):
Somebody was there and we both heard a faint hello.
That was, wow, she's going to be able to talk, hopefully.
I mean, it wasn't immediate, but it was faint, too.
You can hear it held low or something to that sort.
(21:03):
That was another highlight. Now, it wasn't their imagination, right?
She really did let out a hello. Oh, yeah, without a doubt.
She was pushing hard to get it out.
You can only imagine that she's been stuck speechless for a couple months,
(21:26):
more than a couple months.
And now, so whenever you get decanalated what happens is they kind of close
off and put a cap there and until it heals,
air when you breathe and when you say something can leak out of your throat
because it's just gauze so you're not getting a full breath support to push
(21:47):
and make these proper, form these proper words.
So it kind of just takes time as she starts to heal. So she was desperately trying to do that.
And the funny thing about that, and if I can call it funny, was that she had
done sign language so long that she wouldn't even try to speak. She was just signing.
(22:08):
I'm like, no, you don't have a trach anymore. You can try to talk now.
In fact, you need to try to talk because we don't want to rely on sign language.
You have the you're free to
now work on speaking again
talking because that's what we
want you to do and so i had a reminder several
(22:30):
times and it was painful sometimes for her because i tell it it took a lot of
out of her versus signing she got accustomed to just signing and she got and
i got accustomed to really you know fully talking to her through the form of
sign language but I had a constant reminder.
Don't use that as your crutch just come back actually use it as your crutch
(22:54):
but here what you need to do is just talk to me every chance you get.
So that was a highlight in the journey as well that must have been an amazing
feeling yeah I told you I would call her phone and listen to her voice because
(23:15):
I hadn't heard it for so long.
I would hear it in my dreams, but in reality, I hadn't heard it for so long
and I didn't want to forget.
And so it was a major relief and inside I was amped up. I was like, okay.
But I also became impatient because nothing could ever come soon enough.
(23:36):
It was just slow progressions, minor steps, it is very true everybody that tells you when you go through.
An injury like this, that it's not a short-term thing. It's a long haul.
You're in it for the long haul. You be prepared to be in for the long haul.
It's not going to be like a flip of a coin and the next day,
(23:58):
you know, it's like your bones are healed and you can walk and run immediately.
It's the long haul. It's preparing mentally and physically to be able to handle this.
And, And, you know, that is the truth.
You know, I'm here today and I can speak for the past year and a half to almost
(24:21):
two years to the anniversary in a few months that we are still in it. And it's a long haul.
You have to have perseverance and resilience to be able to do this.
And that is the part that I've discovered about myself. You know,
I always sat on the other side.
If this had happened to me to some someone else
rather i'd probably say man you're i don't
(24:44):
know see how you can handle it but when when it happens to you you just get
it done i am amazed that i thought i would have fell flat and try you know die
trying but i the the human spirit Spirit is a very strong thing.
You know, the love and the tale of, you know, dedication,
(25:10):
devotion for your family, for the people you love is a very strong thing.
And that's got me through a lot of this and we're still going.
But yeah, we still have ebbs and flows.
(25:31):
And here now, we're probably going to be here for a little bit longer than where
we were at the LTAC because we're working on having her recover as much as she can.
And so what does every discipline look like? So I'll talk talk about that a little bit.
(25:52):
She had... We discovered that she had... Actually, I think...
She never expressed or told me some of the things that she was going through,
but we had discovered through doing some vision tests in the clinic at the rehab
center that she was seeing double. She had diplopa.
(26:14):
I think that's what it's called.
She was seeing double vision. So I was like, oh my gosh, really?
So there's some things that you cannot even quote-unquote see,
and she was experiencing difficulties with.
I can see that she can't walk. I can see this and that. But now it's just figured
(26:37):
out. Wait, you're seeing double?
Is that a result of the actual brain injury? Or is this just out of left field?
That's because of the brain injury. Wow.
Because leading up to that point, you don't have trained people or she was not
seeing a neuro-optometrist, if you will, to kind of recognize whether she had any vision impairment.
(27:03):
And now in the rehab center, as part of the assessment, she's going to vision
clinic, I discovered she was seeing double.
And I asked her, like, you're seeing double?
It's like, oh, gosh, just keep stacking it. You make progress and then you kind
of take a couple steps and take a step back, right? It's like, oh.
(27:28):
Now, what does it mean when she has double vision? Well, certainly it means
that it's hard to read things. It's hard to see you to a certain degree.
Because if she's seeing two of you and she's trying to focus,
it can also cause headaches.
Because, you know, it's a trickling effect in multiple aspects, right?
So she was fitted with prisms, glasses to kind of merge, converge the vision into one.
(27:58):
And so certain gazes she had, she was seeing double vision, but worked that
over time. So there's that.
Physically, we're just, physical therapy, we're just working on gross motor
movements, trying to move your arms, your legs, just kind of build strength.
(28:18):
And it was here also because of the assessment and physical therapy that we
discovered that she had a shoulder supletion, which is a deficiency.
Maybe it's because of the lack of muscle tone through the lack of use while
she was in bed for more than a couple months.
Once, but she had a limited range in her left side, which was the left side
(28:44):
was the side that was impacted due to her brain injury, her left arm,
her left leg, her left hemisphere.
So we had to work on that because she didn't have full range of motion. She had to wear.
And then we found that she had tightness in her ankles because she's been bed-bound.
(29:08):
When you're bed-bound and you're not moving around, you're not applying weight
to your heels and your ankles.
So that means that your ankles are going to get tighter.
So now she couldn't, even if she could stand up on her two feet,
they were so tight, the The flexibility of her foot was not all there.
(29:32):
So she would not step in an orthodox manner from like heel to toe and her gait
movements, which is her strides, her mechanics of walking was not all there.
So she was having to learn all this stuff, remember all this stuff and also physically be limited.
So there was that to deal with that we, you know, we had to continue to stretch it out.
(29:52):
We had to even, they built a cast for her leg so that it would stay in one position
that you can, you can move the cast and you can put on the cast every night.
It was kind of one of those things where it was retrofitted to keep her heels
in a certain position so that she would get that flexibility where she was not doing anything before.
(30:16):
In speech that was just working on eating.
So she has dysphagia and that's really a swallow deficiency.
She has facial paralysis, some type of...
Part of her face is numb. And when part of your face is numb or part of your
tongue is numb, you're going to have swallow deficiencies as well.
(30:38):
You know, we were seeing ENT to check on her vocal cords. You know, she was...
Aspirating when trying to eat or drink food.
And I just realized I skipped so far ahead. But there was, while you're on a
feeding tube, you can, since you are now decanalated, you can,
(31:01):
at a certain point, start to take things orally.
Because there's nothing in the way.
There's no leakage. I mean, obviously, her wound has to clean up and patch up and kind of seal.
But because she's decanalated now, she can kind of do trials with real food.
(31:22):
And so she was on a puree diet.
Because she had dysphagia, she couldn't really reliably swallow.
They were testing her, doing trials with her to kind of eat puree foods.
But her main nutrition was from the feeding tube.
And, you know, speech, we're just doing these exercises to build breath support,
(31:44):
to be able to provide the foundation to say words, to give intonation, to pronounce things.
Yeah, in this place, it was kind of a breath of fresh air, to be honest,
because it was a different environment.
It was now we're doing active things. And you could see progress.
(32:06):
You know, as you describe these things, then there's Cindy's point of view for
all of this, and it scares me.
Like, if ever there was a day where she would actually want to describe,
I don't know if she will or she won't. I mean, that's up to you and her.
If there is ever a day that she would go back and we revisit all these times,
(32:30):
but in her point of view, I think my jaw will be on the floor.
I mean, you just telling me about her throwing up, her gasping for air and stuff
like that. Those are all nightmares, man.
And that will be something else to listen to.
I would say I'm looking forward to it and not looking forward
(32:52):
to it that sounds you know because we all
care about cindy and to hear her go through this for
that amount of time i think i'd have to pause the audio and take a breath i
don't know i just wanted to chime in that you know give a little perspective
i guess i i would say i would be celebrating the fact that she could do something
(33:13):
like that like i i would just tell you,
wait and see. Just wait and see.
Now, I also have a question. I mean, you call it a brain injury,
and technically that's an aneurysm. Is that right?
Yeah, there's different types of brain injuries you can have,
and they're all brain injuries, right?
She had a brain hemorrhage, which is she had a bleed, and they diagnosed it
(33:41):
as a spontaneous brain bleed.
What happens is that as you're hemorrhaging, bleeding, your brain starts to
swell up and there's no escape, that the blood is just building up.
And it's continuing to bleed. It's not resolving, not stopping.
And so that's applying pressure to sensitive parts of your brain.
(34:02):
And then that could result in stroke because, you know.
Okay. That's probably what I was thinking about.
Because when you said that the left side of her was pretty numb, right?
Technically paralyzed in a sense. as they try to, I guess, reform their connections.
That sounded like a stroke to me.
So there was strokes as well. Yes, as a result of brain hemorrhage,
(34:27):
there would be several strokes.
I can't remember how many they diagnosed there, but there are many strokes.
There are infarcts in the brain, which is like, you know, kind of basically spots of brain injury.
And so that just kind of, neuroscience is a very complicated.
(34:51):
The brain is complicated, right? But also the brain is a miracle.
It is the most. Yeah, it's amazing. You can't explain. Yeah,
it's amazing. You can't explain it.
That is the reason why no one can tell you can't do this or you can do this.
It's all, you know, discretionary
person it's it's it's a it's a case-by-case scenario
(35:14):
there's not like a a concrete
book that tells you you know it's not like you have a broken arm and you put
a cast and you know it's gonna be better this is like something's happened we
don't know but you can the brain can do amazing things it can stitch you back together.
(35:37):
That's the way you have to think I've learned to kind of like you know frame
my thoughts in a way where it's there's always going to be hope there's no one
has told me that she can't do this she can't do that right no one's no one's
ever said that thankfully they said we just,
don't know and that's as much as anybody would admit to and I'm okay with that
(35:59):
you know because I mean what would be better than that is like we do know right
We do know that you're going to get better, but no one's going to say that.
We're working every single day for that.
At this point, I've become more hands-on as well.
We're at a stage where they're training me to transport her from a wheelchair to the bed,
(36:26):
or the wheelchair to the shower chair,
and how to move her around, manipulate her a little bit, because we're entering
a phase or part of the journey where we're closer to home, even though it's
still far away, every step you're going.
And so you have to, the participation is increasingly getting more and more
(36:52):
on the part of family as they start to remove clinical faculties.
So I'm learning to do things for her. I'm learning to, I mean,
I'm sitting there trying to feed her.
I'm advocating for her. I'm learning how to do some of these therapy exercises
because there's carryover from what you do.
What you do during the day in therapy is what you do during the day.
(37:16):
But what really matters is what you do for yourself in your lifetime and who's going to be there.
Your family's going to be there. So now I am getting more engaged at this part of the journey.
I am trying to cook for her or whatever food I get for her, feeding her,
help bathing her, help do certain things.
(37:38):
And at the same time, I'm doing that for Hudson.
Hudson so again there's some
parallel similarities here in
multiple ways you know like just her growth and
Hudson's growth and me taking care of one
or the other to a certain degree they're very similar but I but there is a team
(38:00):
at the rehab watch because she's staying overnight and they're taking care of
her but I'm there all the time I have been there all the time and that was.
Just just draining to be able to to have to be in three different places you know I.
(38:22):
Part i eventually have to go back to work another
part i you know provide for family the other part is i have to
watch after cindy the other
part i have to watch after hudson you should be
amazed at yourself you should be you should just get that pat on the back because
what you went through and you've said as much that cindy does listen to this
(38:45):
and she finds she finds it fascinating right to learn about the aspects of what's
going on around her because she was trapped.
And if this doesn't show her how much you love her, I don't know.
She doesn't want to be loved, I don't think, if she doesn't see how much you
care and how much you gave up.
(39:08):
It's amazing, bro. As I did and tried to do everything, I did not do it all alone.
I just want to also say that I have my family and friends have been very supportive.
You know, I want to thank, you know, Cindy's mom, Cindy's sister.
They have been by my side every step of the way. And when I couldn't be with
(39:30):
her, they were there with her.
You know, when I was with her, they were there with my son.
And so, you know, it really takes a village to take care of somebody.
Like when they say it takes a village to take care of a kid,
and it's very much the same way in my scenario for the case of Cindy and Hudson.
(39:51):
It was straining difficult. I was only sleeping two hours a night.
And I don't think I've slept much more even now.
To be honest, I probably sleep three to four hours just because you're in there for the long haul.
Like I said, there's a lot to be done, and.
(40:15):
With the highlights of her progress and the feedback she's starting to give
back and the growth, the thriving of my son and Cindy, it gives me that little
bit more motivation, the edge.
This whole point of me talking about this is to catalog a time,
(40:37):
a memory in history where we can look back and remember who we are and where we came from.
And I think that there's some benefits to that. And I hope that other people
who can relate to this, not a lot of people are going to relate to this,
but I think a lot of people could find value in a situation like this.
(40:59):
It's a true story. This is not a movie, even though it sounds like it's ripped
out of one of the most horrible movies.
But Mo's living this in real life and
we're never gonna know what
he's going through what she's going through we're never
gonna know but if we could take that and improve our
(41:19):
lives a little bit I think that's what Maurice is really wanting from this
podcast if you could just like look at that sibling that you don't talk to that
much go give that person a hug tell your mom you love her I think that's all
I think that's all this podcast should do and it would have succeeded you know I I want to say that.
(41:44):
There's many nights, many times during this journey, I have felt alone.
It was just, I, because of that, what you said, I just like,
no one's going to understand.
You can imagine, you can put, you can empathize, but no one knows what it's
like to go through this unless you've gone through it.
(42:07):
And I felt very alone. You know, I talk to some friends or family and I try
to kind of explain, but then it's hard to, right?
Because in this podcast is to tell people who can't relate or people going through
the same thing that you're not alone.
(42:29):
I'm going through this. so together we are
all alone if that makes sense because i
you know when you're when
you're trying to get you're trying to go to a grocery store and you gotta you
know and it's raining outside and it's just you and you have to get the wheelchair
(42:51):
out you gotta transport one person and you gotta get the stroll out transfer
nerves and one hand you're carrying a child the other when you're trying to
push your wheelchair straight,
going up the ramp, and it's raining, you can't hold an umbrella.
Those moments are real. Those moments are when I feel I'm alone.
Because nobody can be by my side all the time. The struggle is real.
(43:13):
And that's just trying to go to the grocery store as a family,
because you don't want to leave anybody behind.
And you shouldn't have to.
So...
Music.
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