ETB 53: It's Your Job

ETB 53: What if you could turn the toughest moments of parenting a child with a disability into a source of strength and inspiration? Join me, Sandy Deppisch, as I take you on a roller coaster ride of emotions in the hospital stays that have become an all too frequent part of our lives. You'll learn how to communicate your needs effectively to your support network, and understand the importance of asking for specific help, whether it's a warm blanket or home-cooked meal.

Staying awake through the hospital nights, changing pull-ups, feeding, comforting, and dealing with beeping machines - sound familiar? Let's embark on this journey of shared experiences, struggles and strength, as I read a touching blog post, "Going Home," that vividly portrays our fears, tears, and triumphs. Find out how we can all make a difference by reaching out to each other, and remember that there's always a community ready to lend a hand and a heart. Because parents like us, we're not alone on this road less traveled, and together, we create a realm of understanding and support.

Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/

Episode Transcript

Sandy Deppisch (00:05):
Hey there, I'm Sandy Deppish, and this is the
Embrace the Blessing podcast.
Each week I talk with a parentwho has a child with a
disability.
They share their biggestchallenge, their greatest joy
and their hopes and dreams forthe future.
You'll learn about resourcesavailable to you and discover
helpful hints and tips If youwant to be inspired and

(00:27):
encouraged, stick around.
Let's walk the road lesstraveled together, hey guys.
So the goal for this podcast isto encourage parents who have a
child with a disability to knowthat sometimes the road is
tough, but we are here for eachother.

(00:49):
Most of us have been throughwhat you might be about to go
through or are going through,and hopefully we can share some
helpful hints and tidbits tohelp you navigate this
challenging road, sometimesfrustrating and overwhelming
road.
Sometimes things happen wherethe guests that I have planned
for the show aren't able torecord their podcast episode,

(01:10):
and so at least a gap in theweekly schedule.
And that's when I fill in witha short story from one of my
blog posts over atEmbraceTheBlessingcom, and this
one goes out to all the parentswho have children that end up in
hospitals.
Frequently it's been our casewith Josiah.
For the first three years ofhis life.

(01:30):
He was hospitalized over 17times.
It's gotten better as he'sgotten older and he doesn't end
up in the hospital nearly asmuch, but those visits are not
for the faint of heart.
So I want to read this to you.
It's called Going Home fromMarch 9th of 2012.
Keep in mind that I am reading.
You know I try so hard to makeit sound like I'm just talking,

(01:52):
but I'm a former kindergartenteacher and I used to love to
read to my class and I just getinto that kindergarten teacher
voice and it's really hard forme to make it sound like I'm
talking.
I've even gone so far as tohold my phone up to my ear and
pretend I'm talking to you onthe phone while I read this, so
hopefully it'll sound like I'mtalking.
It doesn't work, so I'm justgoing to go ahead and read it.

(02:12):
Here we go.
Josiah is going home.
A team of doctors came in thismorning and gave us the thumbs
up.
Bloodwork shows a strain ofsomething that has too many
letters and syllables in it forme to pronounce.
Basically, he will needantibiotics for a couple of
weeks.
We can certainly take care ofthat at home.
This morning at 5 am, a coupleof nurses came in Josiah's dark

(02:34):
room.
He and I were sound asleep.
Since last night they have beenkeeping a close eye on the IV
site.
It was red and a tad bitswollen.
They were able to get his vitalsigns without disturbing him,
but since his arms still lookedred, the IV needed to be removed
.
They flipped on the lights,held him down and removed it.

(02:55):
He was not happy about it.
They were very gentle with him.
They really did a great job.
I just felt bad for Josiah.
He was in a peaceful, soundsleep and then suddenly he
wasn't.
Hospital stays are meant to helprestore health, which you think
would involve plenty of sleep,yet very little sleep happens in

(03:15):
a hospital.
Every four hours someone checksvital signs.
Every few hours someone pops into ask questions.
Every so often someone stops byto offer some insight and share
the latest relevant information.
Every so often you get a chanceto close your eyes for a bit of
rest.
If you are the patient that is,if you are the mom or dad

(03:38):
staying with your child, who isthe patient, it's a totally
different story Then you arepretty much always awake.
It's your job to change thepull-ups, wipe the nose, feed
the food, change the wet gown,put the bed up, lower the bed
down, answer the questions, askthe questions, comfort the sick
child.
Buzz the nurse when the IVmachine beeps.

(03:59):
Buzz the nurse when the IVmachine beeps again.
And buzz the nurse again whenthat darn IV machine won't stop
beeping.
It's your job to be strong whenyour child is weak.
It's your job to keep a runningmental list of every single
thing your child ate and drankand expelled since the illness
began, so you can accuratelyreport it to the medical

(04:21):
professionals who ask.
It's your job to smilepatiently and continue to be
polite when four differentmedical professionals, ie
interns stop by five minutesafter one another to check on
your child every single day,can't they simply share their
findings with each other?

(04:42):
It's your job to hold yourchild down as each one checks
vital signs, and your child isnot wanting anyone to even look
at him, let alone touch him.
It's your job to be strong soyou can hold down that weak
child who has strength wellbeyond his size.
It's your job to talksoothingly in his ear as you
throw yourself up over thebedrails to literally straddle

(05:03):
his body so he remains stillduring those frequent vital sign
checks.
It's your job to instantlyfigure out creative ways to
maneuver your body to keep theninja that is your child from
wiggling out from under youwhile they check his vital signs
.
It's your job to look polishedand sound intelligent and
knowledgeable when a team ofseven count them seven medical

(05:27):
professionals show up withclipboards in hand asking
specific questions in the weehours of the morning.
It's your job to pretend a loudalarm sounding just outside the
door, signifying a fire drill,has nothing to do with you or
your child.
It's your job to roll over andtry to drown out the noise with
a paper thin hospital pillow.
And it's your job, when thelights are out and the child is

(05:50):
sleeping, to curl up on the rockhard recliner that doubles as a
bed to get a restful night ofsleep for 15 minutes.
If you're currently in thissituation where you have a child
in the hospital, my heart goesout to you.
Hang in there, it does getbetter.
Ask your friends, your family,your neighbors, your church
family, your loved ones veryspecifically for what you need.

(06:14):
My favorite thing whenever Iwas in the hospital with Josiah
was a soft, fuzzy, warm blanket.
The sheets and blankets in thehospitals are just not warm and
they're not comfortable.
Another thing to be veryspecific about is what type of
foods you like or your childmight like, because we all know
hospital food eh, it's not thebest.

(06:35):
Be specific about what it is youneed.
If you're craving food fromyour favorite restaurant and you
know you're not gonna get homefor a really great home-cooked
meal for a while, let yourfriends know that that's what
you would like.
If you need someone to come andsit with your child so that you
can go home and shower in yourown bathroom and sleep in your
own bed overnight, let yourfamily know.

(06:55):
Reach out and let other peopleknow what you need.
People wanna help Sometimes.
You just need to let them knowwhat it is that you need.
Hang in there, you're gonna getthrough this.
Thanks for listening to theEmbrace the Blessing podcast.
Visit embracetheblessingcomslash podcast for show notes and
links to any resourcesmentioned.
If this has been beneficial toyou, please share it with a

(07:18):
friend or post it on your socialmedia pages.
Join me next Wednesday for moreinspiring stories from people
just like you.