Cheryl Wegener - phaware® interview 401
Jan 31, 2023
In this interview, recorded on the 3rd anniversary of her
daughter Madison's passing, Cheryl Wegener, discusses how life has
changed in the three years since Madison lost her battle with PH on
January 19, 2020 and why they continue to fight this terrible
disease in her honor.
You can also read more about Madison on her CaringBridge
page.
My name's Cheryl Wegner. I currently live in Fenton, Michigan. I
became a part of the pulmonary hypertension club, I suppose, in
2012 when my daughter Madison was diagnosed at the age of six with
pretty severe pulmonary hypertension that was later deemed to
probably be something she was born with and just went undiagnosed.
Madison battled the disease for eight years. Much of that she
thrived. We adjusted as a family. She adjusted as a kid. As she got
into her teenage years things started to get a little bit harder.
The disease started to have a little bit more impact. Especially in
her freshman year in high school it was evident that things were
progressing, symptoms were increasing. As we were in the process of
trying to get answers on how best to move forward with this disease
and with her prognosis, and what surgical interventions were going
to be next, she went into cardiac arrest while in the hospital. She
was brought back to be placed on ECMO, which allowed her body to
rest while hopefully she came back to us. But ultimately, in all
reality, she probably passed away in that moment during her cardiac
arrest. She was probably gone right away, and ultimately we had to
let her go.
So, it is literally three years yesterday to the day when she did
her honor walk at the hospital. We knew from a very early age that
she was a big advocate for organ donation, and so she did her honor
walk. We said her goodbyes and they wheeled her into the operating
room to ultimately die as a hero for somebody else's child. An
honor walk at the hospital is when you have a person that is an
organ donor and they've been kept on life sustaining equipment for
that purpose, for the team to get in place, the matches to be made.
When everything's in place, the hospital staff lines the hallways
with its nurses, and its doctors, and its support staff, and its
whatever family members you invite. They kind of make it known to
other families on the floor that this is what's going to happen,
and welcome them to come out into the hall as well. It's kind of a
hospital parade in honor of your child on their way to literally
save lives.
I guess because Madison had the wish to be cremated that bought us
some time in planning her celebration of life. We actually had
nearly two weeks to put that together. That kept us very busy
mentally, just arranging the logistics of that and making it a
really amazing event. After that, people are still very much
invested in you and they're stopping by, or they're dropping off
lasagna or wine. That goes on for a little while and then slowly it
begins to trickle. I think for us, we were in a unique situation in
that literally a month after Madison passed, we were suddenly in
COVID world. That definitely played an impact because now we had
another distraction in the world. Now we had what do we do with our
groceries? Do we change our clothes in the garage. Do we wipe
everything down? That was another distraction. I think we went from
shock, and disbelief, and numbness. But then we had all these
distractions for a good year. We just, for that year, went through
the motions and we were in survival mode, I think, just trying to
hold each other up. Because of COVID, that's pretty much all we had
was each other, and our online network.
That first year, I mean, I think it's really a blur. It's a lot of
numbness. It's a lot of things I've forgotten. It was just
literally just you got to get up in the morning and you got to
progress, and you got to go through the day. Then it changes after
that. After that year, there's obviously the cycles of grief, and
there's no manual for this just like there's no manual for
parenting a kid with a terminal disease. But you go through all the
stages and I think we're still in the process of going through the
stages. As a parent, I've gone through the guilt stage. We were not
literally in the hospital when Madison had her cardiac arrest. We
had gone home to grab some clean clothes, to kind of tidy up a
little bit, because we knew people were coming to visit Madison.
That morning we had had to meet with a lawyer because my son
Matthew's school was not handling his coping with his sister being
in the hospital, her being in ICU well, and they actually made
motions to expel him while this was all going on.
So, there's a lot of guilt. I think Matthew holds a lot of guilt.
We would've been at the hospital if we weren't meeting with a
lawyer to deal with his behavior problems at school. As a mom, I
hold guilt for not being there. I question whether we should have
done the pot shunt earlier. We had been evaluated for it, but the
doctor said, "Not yet. It's too dangerous. It's not your time yet."
But Madison had told us it was time. We told her we have to try the
easy stuff first. That's what we did. And so, I still at times
second guess myself there, and there's guilt there. At times you're
angry. I question things still. I mean, I love my PH community. I
love the girls that Madison met at conferences over those years.
But you look at the picture of the six or seven of them all
together, and so many of them were in worse shape, PH wise, than
Madison was at the time.
I never would've dreamed that she would be the first one to go. I
would've picked one of the much sicker one. So, you question why is
that kid still here? My kid's not still here. Then you feel guilty
for saying that, because you don't want to wish this on anybody.
But it's just a tumultuous rollercoaster of emotions through it.
Along the way you're just trying to figure out, okay, what's my
role now? Who am I now? Some of that, we're still figuring that out
honestly. I still feel part of a PH family, but at the same time I
feel like I'm also, from the parent perspective, we are an example
of everybody's worst nightmare. This is what happens. This is the
crystal ball. This is going to happen to your kid too,
probably.
I think a big focus for us has been continuing Madison's fight, her
last wish for a cure, and we promised her we would never stop
fighting for that. So, we've continued that. I think that's
definitely helped. For me, personally, it was just making sure, I
think, she hasn't forgotten. That her life meant something, her
continuing that legacy, I think that's been very important for me.
You never want her to get stuck into the shadows of life, which is
only natural at some point. But I also want the people who knew
her, who knew her story, I somehow want them to file that away in
their heart and carry her with them too.
The dreams are the best, absolutely. I wish in three years having
four of them, I wish that I could have one. Even greedily once a
week would be great. But the dreams for me, and I've always been a
dreamer, I dream the weirdest stuff and it's very detailed, very
concrete. But these dreams are different in that in the moment, in
Madison's appearing in my dream and I'm there, and it's so real. It
is happening. It is all of a sudden we're on our deck, and I'm
talking to her, and she comes walking up. And without missing a
beat she tells me she was responsible for 172 rainbows yesterday.
And I'm like, "Well, that's really cool. We saw a couple of those."
We just talk. And there's, for example, a vision of us walking down
downtown Brighton. We're talking, and just talking mother to
daughter, friend to friend. I don't get the specifics of that
conversation, but all of a sudden we're sitting in a Chili's-like
situation, and she orders lemonade so I know it's Madison, because
she loved lemonade. We continue our conversation, and I'm acutely
aware that time is running out. There's this sand timer there, and
I only have a few more minutes with her, and I'm just like, "I want
more time." She's like, "I have to go." And she goes. You wake up
and it's just so incredible that she was there.
I've had, like I said, just three or four of these dreams,
different scenarios, and I'm just so grateful for them. It makes
you sad, but you're just so thankful that you got to touch base.
There's so much about the human brain we don't know. There's so
much about the universe we don't know. I mean, who knows what's
real and not? But those are terrific moments for me, for sure. I
treasure those.
We moved from a bougie neighborhood in Brighton with a beautiful
arch house, including storage and stuff probably 6,000 square feet,
to losing Madison, going through COVID. I teach high school. I very
much love my job. It's my passion. My husband is in corporate
America, makes a ton more money than I do but does not love his
job. It was really an eye-opening experience, I think, to what
matters in life, and how much do you sell your soul to the
corporate world versus being happy and doing something you love?
So, we went from what I call our arch house, to buying some
property in Fenton that had a very old farmhouse on it. At the age
of 51, my husband decided he wanted to be an organic farmer.
Obviously a major life change for us. This house is maybe 1,100
square feet, but we're on 18 acres. It's year three of us running a
community supported agriculture program, a CSA. It's grown from 11
members our first year to 50 members our second year. In about four
days time, I think we're up to 80 members this year with the goal
of 100. So yeah, very much a life reset, both in losing Madison and
just having to rethink where we get our food and what we put into
our bodies because the COVID situation. But just really what's
important, and what do you want to spend your time on this earth
doing? For him, it was time to find some joy.
Somebody along the way, along our journey, told us that we should
get to know the palliative team at the hospital long before we felt
like we needed to. Palliative is not hospice, it doesn't mean
you're counting down, it's nothing, but get to know these people.
We did. So, I was thankful to already have a connection with them
in the hospital, because I mean, they did offer a bit of comfort
while we were there those last few days. That was nice that not
dealing with strangers, just talking with people that already knew
us.
We, as a family, were already doing family therapy in advance of
Madison's passing. I think that also was very helpful, just already
having a couple people that knew us, knew our story, knew Madison's
story, knew the dynamics between our kids, knew the dynamics
between my husband and I. It wasn't having to sit down, explain the
whole thing to somebody while we're grieving the loss of our kid.
They already knew the story. We were actually in that therapy
office the night before Madison's heart catheterization. She was
insisting she did not want her brother to be at that appointment,
and the brother wanted to go, and it was this whole thing. I can
still picture her sitting in that blue chair and saying, "I don't
know why you guys are so nervous about this heart cath. I've done
this a million times before and nothing's going to go wrong." For
the first time on, I think it was heart cath seven, something did
go wrong. But having that team was very helpful to us, just having
already somebody knowing our story, and being able to slide back
into that and deal with that.
Then I think the third thing that made it, I don't want to say
easier, nothing makes this easier, but we were very clear about
Madison's wishes years prior to her passing. Because of her PH
connections, because we didn't have her live in a bubble, she knew
that there was a good chance she would maybe need new lungs
someday, or a new heart, or both. She had had friends who she
celebrated them getting the call, and they got their lungs and
they're doing great. She was very much a advocate of organ
donation. Knowing that made it a lot easier to sit down with that
organ team, and check all the boxes of everything that they ask of
you.
It was also helpful to us to know, and this was more through the
process of going to family funerals and stuff, but whenever we went
to one Madison was very wise before her years and articulating what
she liked and didn't like. She absolutely thought it was disgusting
to have a body on display. She never wanted that. She couldn't
understand it. We knew that wasn't the gig. She didn't want
everybody crying. She didn't want it to be a sad affair. She wanted
some elements of God and faith in there, but she didn't want
everybody leave just crying. We definitely did not have a
traditional funeral or celebration of life, we did it Madison's
way. It was beautiful, and it was probably the coolest funeral I've
ever been to. But yeah, so just knowing that person's wishes that
made it so much easier in planning it.
Going forward, I think I struggle with this, but you have to learn
to be kind with yourself as a parent, and patient with yourself,
patient with your loved ones. You're never going to be the same
person as you were, and that's kind of what it is. You put the
pieces back together, and you're never quite the same. The love for
that person is in there, and it's never going to seal over or seep
out, or it's always going to be there. But time definitely doesn't
heal all wounds, but you do go forward. I think the fear of your
child being forgotten, that love that you feel for your child, I
mean, that's never going to go away. Just like with PH, you get
that diagnosis, you're like, "Okay, what's our path going to be?
This is throwing us a curve ball, and what's this path going to
be?"
Losing a child, definitely unexpectedly, you just got to figure out
what that path's going to be and what that's going to look like.
It's not easy. There's no timeline for it, but that's kind of how
it goes.
My name is Cheryl Wegner, and I'm aware that my daughter, Madison,
was rare.
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