Unseen Strengths: Parenting Kids with Special Needs with Lindy Spencer

Episode Transcript

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Lindy Spencer (00:18):
On today's episode have meant this opening
where the spinal cord came outof the canal and because she
needed surgery and to send herhome with us just bandaging and
let infection set in and itwould lead to death.
Thankfully, we were grounded inour faith and like didn't even

(00:40):
consider that.
Well, of course we'd want tohave her treated and so she had
a major surgery the very nextmorning after she was born.

Paul Snamiska (00:50):
Welcome to the Life Challenges podcast from
Christian Life Resources.
People today face manyopportunities and struggles when
it comes to issues of life anddeath, marriage and family,
health and science.
We're here to bring a freshbiblical perspective to these
issues and more.
Join us now for Life Challenges.

Christa Potratz (01:17):
Hi and welcome back.
I'm Krista Potratz and I'm heretoday with Pastor Jeff
Samuelson and today we have aspecial guest with us.
We have Lindy Spencer.
So welcome, lindy.
We really appreciate having youon the podcast today.
Lindy is so kind to come ontoday and really share with us

(01:38):
her story and her experience,and we specifically really
wanted to touch on the topic oftalking about raising a child
with special needs and thistopic for all of our listeners
too.
I think a lot of people maybepersonally don't have a story
with raising somebody in thatsituation, but maybe know

(02:02):
somebody.
I mean it can touch a lot ofdifferent people too, and so we
really just find, you know,having people on that can share
their story just is reallybeneficial to a lot of people
and a lot of our listeners aswell.
So thank you so much for comingon, lindy and I think you know
I'll just throw the ball to yourcourt here and if you can share

(02:26):
just a little bit of yourbackground and your story with
us, oh sure, well, I'm happy tobe here and, yeah, my husband
and I are high schoolsweethearts early in our
marriage.

Then, unfortunately, we had a
miscarriage first, and thenafter that we were pregnant with
our daughter, and she's the onewho has special needs, and she
was born with spina bifida manyyears ago actually, she's an
adult now, and so we had quite ajourney.
We didn't have any experiencewith spina bifida or really with

(03:00):
a major disability in ourfamily, so we ended up with lots
of life issues that we dealtwith, both in her initial
treatment and then eventually,our family had secondary
infertility and anothermiscarriage, and that led us to
adoption also, which was alwaysin my heart.

(03:22):
So we have one daughter withspina bifida, and then our son
is 10 years younger and hejoined us through adoption.

Oh, wow, well, thank you for sharing that.
Yeah, you know, it really doessound like you have experience
here with the areas of lifechallenges and the different
things that we talk about here.
On the podcast you mentionedtoo, just kind of at the
beginning with treatment withyour daughter when she was

(03:49):
younger.
Can you maybe kind of expand alittle bit on that and even to
like just maybe when yourealized that she had spina
bifida and that process?

This was, feels like quite a while ago.
It was back in the early 1980sand we were both young and newly
married and she was born andunfortunately we didn't know
about the spina bifida until onthe delivery, until she was born
.
Nowadays they have so much moretesting and things available

(04:22):
that you can plan medically andas a family also.
But back then she was born, mydoctor was gone and so the
fill-in doctor.
She was actually born breech,which added to problems, and
there too these days, if theyknow you're going to be
delivering a child with spinabifida, it's kind of recommended

(04:45):
to do a C-section so theopening in the back doesn't go
through all the trauma of thebirth canal.
But there again, we were backin the 80s.
So she was born and we hadn'theard of spina bifida.
They used the wordmyelomeningocele.
That sounded very foreign too.

(05:05):
She was transferred immediatelyto a children's hospital and
then the question came to us.
I'm trying to think if it was,we had her baptized right away
in the hospital.
We brought our pastor there andI think it was that night or
else top of the next morningwhere the medical people listed

(05:27):
all the problems that she likelywould have.
Only some of those came trueand then said do you want her to
be treated or not?
A non-treatment would havemeant this opening where the
spinal cord came out of thecanal because she needed surgery
, and to send her home with usjust bandaging and let infection

(05:49):
set in, and it would lead todeath.
Thankfully, we were grounded inour faith and didn't even
consider that.
Well, of course we'd want tohave her treated and so she had
a major surgery the very nextmorning after she was born and
we went from there.
So it was having to make thisbig decision with a pretty

(06:13):
negative outlook.

Wow, that's a lot right at the beginning there
too, yeah, how did you copewith that?

Jeff Samelson (06:21):
You were a very young couple.
What were the things that youfound helpful or perhaps
unhelpful about dealing withthat?
You were a very young couple.
What were the things that?

you found helpful or perhaps unhelpful about
dealing with that.
You know it really helped thatwe were grounded in our faith.
I was actually teaching in aLutheran elementary school at
the time and I had met with thepastor talking about baptism and
that kind of information, andso our church and our faith were
really helpful.
We had that.
Family is helpful, but theyalso kind of are struggling at

(06:49):
the time too to understand whydid this happen, and so it can
be a mixed experience.
But yeah, I would say that ourfaith was really what got us
through because it wasdefinitely overwhelming.
Really what got us throughbecause it was definitely
overwhelming.
And then connecting with otherfamilies and the support, the
social worker who connected uswith other families, and all of

(07:11):
a sudden it became a little bitmore normalized and we could ask
just all the questions weneeded to.

Once you got your daughter home and were
starting to raise her, what weresome of the challenges that you
found as you were raising her?

Probably just navigating the whole medical
system was one of them.
We were new to that and youngand even realizing.
I remember once we went to aspecialist it happened to be
urology and they gave an opinionabout her needs and then we
consulted another one and weended up consulting three

(07:51):
different urologists sospecialists and they all had
three somewhat differentsuggestions.
And these are the specialistsyou know.
And then they said, well, kindof what do you want to do?
And I'm like, oh, so it's timeslike that where you reach out
to other families, read theresources were very helpful

(08:11):
being connected to a supportsystem.
There was a lot of informationout on spina bifida so we could
check into that and then justpray about it and just try to
make the best decision and thenjust pray about it and just try
to make the best decision.

Yeah, you know, when you mentioned to like
reading things or evenconnecting with other families,
I mean right away, like my mindjust goes to our online world,
Like, oh, yeah, you know.
Yeah, you just, you know,joined a Facebook group, like
with the families in the area,or you got all this information
at your fingertips.
I mean, I'm realizing thatthat's not probably what it was

(08:51):
like for you at all.

Correct.
Yes, and maybe you can help meremember when the internet
really got going, but back thenit was.
We didn't have texting, youknow, it was pick up the phone
or grab a book.
That was about it, yeah.

Yeah, I was in high school in the 80s, so yeah,
that's correct, we didn't haveany of those things.

Whole different world now.

As you were raising your daughter, and
everything too.
I mean, you talk just about howgreat that community was of
people that knew what you weregoing through and that would
support you.
But what were maybe somechallenges that you saw, maybe
other people or you know justsomething, maybe that you wished

(09:39):
that people understood moreabout your situation as you were
raising your daughter?

understood more about your situation as you were
raising your daughter.
You know, sometimes as a familywe couldn't like join in an
activity or go to an event.
And it wasn't because we didn'twant to go or we're saying no
to the people.
It was looking at our family'sneeds and her needs specifically
and can this work.
And that can be a little bitchallenging, it can be a little
sad sometimes too, but you needto prioritize your needs and

(10:09):
then see how they can fit intothe situation, and so trying to
explain that to others would beone thing that can be a little
bit difficult.
Or it might seem like she'smaybe not wanting to engage and
it's probably more so due to alimitation that she is
challenged to initiateconversation.

(10:30):
So it's not that she'santisocial or doesn't want to
join in, it's just more of thedisability or some limitations.
And so the importance of otherskind of reaching out to her
makes a difference of others.
Kind of reaching out to hermakes a difference.

What kind of maybe effect did it have on your
day-to-day, your typical day asa family?

You know it's a little bit hard to know because
she was our first child so wecouldn't know what family life
was like, apart from my husbandand I before that.
But I would say we are probablyneeded to be a little bit more
structured because there's atiming of certain either I don't
know medications or bathroomtiming or certain different

(11:14):
needs that she'd have, and alittle bit more of being planned
and being intentional, makingthose phone calls, setting up
appointments.
We kind of live by the calendara little bit more and just to
make sure that everybody's needswere met.
So it's not maybe quite asflexible as before as one would

(11:37):
be.

What would her experience have been like
growing up then?

You know, that was the only way Nicole knew
that things were.
I think of it when someone isable-bodied and then they have
an accident or some kind oftrauma and they lose function,
and how difficult that is.
But for Nicole she never didwalk without assistance and so

(12:05):
she wheeled everywhere and thatwas her life and she was just.
She is described as the mostpleasant person.
God has just blessed her with agreat spirit, and so what's
lacking in toes that don'twiggle, just her spirit makes up
for it, and she's already beenhonored by one of the nurses as
patient of the year, kind ofthing, and, you know, even in

(12:27):
the hospital.
So we just feel very blessed.
I've learned from her and thatkind of spirit, but otherwise
she, you know, I would dodaycare, home daycare, and she'd
have people to play with.
And we have a little bookletthat shows two kids going to the
ice cream store and the boy isclimbing up the steps and right

(12:51):
beside it is a ramp, and so thegirl is wheeling up the ramp.
So you know, still wanting to dothe same things that everybody
else does, but maybe having todo it in a different way.
In fact, every year I'd go inand talk to her class second or
third day of school, either withthe school nurse or the school
guidance counselor, and we'd letthe kids have a chance.

(13:11):
We'd explain about disabilitiesand what's hard for everybody
and what are you good at, andthey could ask their questions
and you know that was alwaysinteresting.
They'd say, well, how does sheswim with her wheelchair?
They picture Nicole in a chairand so that idea it's kind of
like glasses that you put on andyou need to wear, but then you

(13:34):
know you don't swim with themand you don't go to bed with
your wheelchair and she couldpop a wheelie and you know, just
so they got to understand.
And then it really seemed likethat helped friendship and okay,
now let's just go play.
You know, because they got it,yeah.

That sounds really wise that you did that.

Yeah, thank you .
Yeah, and the questions thatyou mentioned too, with the kids
.
I mean I can really see that Ihave some young children right
now too, and I mean they justgenuinely want to know how that
all works.
It's just, it comes from a verysincere place.

Yeah, and once you address that fear of the
unknown, then it just makeseverything easier and they can
just go play again.
Yeah.

You mentioned, too, that you adopted your son
10 years after Nicole was born.
How did that change the familydynamic?
Was it different?

after that we love him to bits and he was a
very energetic guy and so wefelt like we had the whole gamut
.
I always wanted a kind of a bigfamily and I felt like I got a
little bit of everything with mytwo, you know.
Lord answered that just in adifferent way.
And so I guess the benefit andthe need for two parents really

(15:00):
showed up, because often I'd behelping Nicole and addressing
some of her needs and my husbandwould be with our son, playing
and interacting with him, or I'dtry to make sure he could still
have friends over and do allthe typical things.
And so we were prettyintentional that he was friends

(15:22):
with our daughter but not havingto do any caregiving.
I didn't think that that was agood idea.
And yet he got to do some coolthings that maybe like we would
go and stay at the RonaldMcDonald House when she'd have
medical surgeries and boy, thatwas the coolest place to play
and had a playroom, an arcaderoom and and so it was a whole

(15:46):
family adventure.
Try to make the best of all thesituations.

Yeah, you know, when you were talking to about
just you mentioned, like your,your husband and how you guys
were doing that together too.
I mean that really stood out tome.
Yesterday I was with all fourof my children at the dentist
office and the receptionist waslike, wow, you know, you're,

(16:13):
this is.
This is basically like this iscrazy, and I mean.
To which I replied you know, Imean I really am very blessed.
I do not do this on my own andI mean my husband really helps
quite a bit and has a great jobto where he is able to be home

(16:34):
in the evenings and on weekendsand that type of thing too.
And so, you know, I just loveit if you'd maybe speak a little
bit more to how you guys reallyworked together in this area
and with your family.

You know that basic communication is so
important.
When I often would take Nicoleto her doctor appointments and
he would stay at work so hedidn't have to take vacation
days.
Sometimes that was a good ideaI don't know if it was always
the best idea, but that's whatwe did.
But I'd take notes I'm a hugenote taker and then when we got

(17:08):
home I would share the notes andwe were living in small town,
northern Wisconsin, and so wewould have to drive a number of
hours to get to the doctorappointment and stay at Ronald
McDonald or with a family.
So sharing those notes andmaking sure everybody was aware
and doing what we could that way.

(17:29):
But I must say support systemswere really important too.
Besides the two of us, we wereconnected actively with the
Spina Bifida group and someeting other families and you
just didn't feel alone and wecould sometimes, you know,

(17:50):
commiserate about the strugglesor we could say, hey, you know,
I got this great book, or wefound this great therapy center
and whatever it was could sharetogether, and that was very,
very helpful.
I have a just.
I really love support groups.

Yeah, no, that sounds really neat and I can
definitely see the benefit withthat.
Besides support groups, too,were there any other resources
that you found really helpful?

Back then I hope I can say it on here I listened
to Focus on the Family.
It had a lot of parenting typethings and parenting kids with
special needs.
So that was very helpfulbecause you could be at home and
doing your thing.
Or I mentioned the booksconferences either one day, that

(18:44):
kind of thing where you'd allcome together and have a number
of the professionals speakingthroughout the day and taking
those notes and learningtogether, and then the people
you were sitting with who alsowere parenting kids with special
needs, who also were parentingkids with special needs,
learning and sharing with themtoo.
So support in various ways, youknow, in that networking.

And then certainly our church and our
pastors were helpful too,supportive and encouraging.
What would you say has been themost rewarding part of being a
parent to a child with specialneeds?
Maybe that?

you learn to treasure the things that are
really important and it leadsyou to dig deeper, to look
deeper.
We don't have again toes thatwiggle and certain things that
other parents would kind of getexcited about, but we can get
very excited when that firstrolling over happens, not at the

(19:47):
time that maybe other kidsrolled over, but when it does
happen or a partial roll, youjust celebrate and probably
celebrate maybe even a littlebit more because it took a
little work to get there.
It drove me into a deeper lovetoo, to really appreciate her,
and you find an inner strength,and I would say God-given

(20:08):
strength that you really didn'tknow you had.

Yeah, well, one of the thoughts that strikes me
as you're talking about that,the idea of maybe a special kind
of love, or even more love, ina way.
And it's actually a goodillustration for us of God's
love for us, because we make hislife very difficult, so to
speak, and yet he loves us allthe more.
And it's helpful sometimes torealize that he doesn't love us

(20:34):
because we're so good, becausewe're so wonderful and perfect.
He loves us despite that.
And it's just a thought thatcrossed my mind, thank you.

Yeah, yeah, and certainly we needed, or we
learned, a deeper dependence onhim too.
I remember one time, as she wasmaybe five, six, and Nicole's
had numerous surgeries throughthe years that go with a long
spina bifida and they wereactually carrying her through
those doors that say noadmittance for us as parents

(21:08):
into a surgery and really hardon a mom.
And I had brought my Biblealong and I didn't even know
where to look and I just prayedthrough the tears and said, lord
, just lead me to something and,you know, open the book.
And he certainly did.
But you're just, you're weakand depend on strength.

You're just.
You're weak and depend onstrength.
Your daughter is now an adult,but what would your advice be to
people that are maybe juststarting out on this journey?
So maybe you just got adiagnosis and maybe now it is an
in utero diagnosis.
With something like this whatwould your advice be to a young

(21:48):
couple?

Probably.
Just remember it's a she, he isa child first, and disability
second, and even the languagethat we use, not a disabled
child but a child with adisability.
And remember that's first andforemost the most important.
You're not alone.
It's okay to ask for help andit's a good thing.

(22:11):
It's actually, I think, a signof strength and to reach out,
not compare.
You just kind of get stuck thenif you compare to what others
are doing at that same age, butjust enjoy the child for who
they are age, but just enjoy thechild for who they are.

You have mentioned now with your child
being an adult what is life likefor her now.
Can you describe a little bitabout the situation she's in
today?

We're so proud of her and she is so happy to be
where she's at.
She's a full-time wheelchairuser, doesn't stand at all and
she is now in a house moved out.
She was happy to move out ofher family home, from our home.
She's got a strong sense ofindependence and so we found a
home that was advertised as oneof Wauwatosa's earliest

(23:07):
accessible homes.
It had been built for a veterancoming back from World War II,
so it had a lot of accessiblefeatures already in it.
We did renovation and so wefollowed the pattern of some
others there.
Again, our networking.
There was another familysimilar situation.
We learned a lot from them.

(23:27):
There was another familysimilar situation.
We learned a lot from them.
So Nicole has the personalhelpers come and go for whatever
she might need if it's cookingassistance or personal care type
thing, and we've got safetiesput into place.
And she has a roommate.
Another young lady who wantedto move out from her family home
too has different needs thanNicole's, but it's just been a

(23:49):
wonderful thing and she's sohappy to be at her place.

Sounds great.

For everybody.

Really, you know it's, it's really what a
normal type thing you know, yeah, was that a big adjustment for
you to do?

that you know we were all pretty much ready.
So it took a lot of things toget in place.
It took us two years from thedate of acquiring the house
until it was fully ready and itwas during COVID.
So she moved in and hercaregivers would come with their
masks on and you know we justdid it and yeah, there was a lot

(24:26):
to get in place.
But again, masks on, and youknow we just did it and yeah,
there was a lot to get in place,but again it would have been
overwhelming had we not had someothers to follow their pattern.
So the importance of networkingreally came through.

It sounds like you've had a lot of ups, you
know, with your.
You know your whole experiencewith this.
I'm certain there were plentyof downs, with bad days and
difficult times and hardquestions to answer.
You mentioned when she wasgoing into surgery and went
through those doors and thingslike that, and you mentioned the

(24:58):
most important thing, obviouslyrelying on the Lord.
Were there any more practicalthings that you would say were
really helpful for you inmanaging those ups and downs of
life?

You know, along with celebrating any of the
small steps, it's also grievingthe losses.
You know there isn't that timewhere she can run in the race
like others run and so to giveyourself permission to grieve
those losses, there werecertainly plenty of tears, to

(25:29):
grieve those losses.
There were certainly plenty oftears even that she kind of had
to go to school at age three.
Then the birth to three programand away she went on the little
mini bus and you know, you kindof felt like it wasn't as much
a choice, she just needed it andit was a good program.
But I put her on the bus andNicole being being independent
and she wasn't speaking a lot,she said mom, and pointed out

(25:52):
the window like I needed to getoff the bus to go to school.
So I went in the house.
She went off.
I went in the house, had a goodcry, called a friend, not even
a friend with a child with adisability, but just a friend to
talk it through and, you know,a shoulder to cry on Getting
counseling as needed.

(26:13):
I think that's always whodoesn't need support of that
kind of thing in their life andI think it's a helpful tool,
christian counselingspecifically.

You've mentioned really like this whole
talk has been.
It's been sprinkled in, but youknow just again maybe, where
did you really draw yourstrength in your faith with
everything in life, whether itis encouraging Bible passages or
just things, that truths of Godthat you really focused on over

(26:50):
the years.
What are just some places ofstrength that you went to in the
Lord during your journey?

I remember going to, I was teaching Sunday school
and I went to a conference andI was talking with the pastor
and kind of feeling a littleblue, and you know that question
came up about why me?
And this pastor said, well, whynot you?
And at first it was like, oh,that ouch a little bit, you know

(27:22):
, but he didn't do it that way,you know it was.
And then he went on to say, buthe didn't move that way.
And then he went on to say,well, look, you have advocated
for her and loved her and mether needs, and what if she would
have gone to another home thatwasn't doing that for her?
And so in that case it was thepastor just really encouraging

(27:47):
me to kind of get out of thatlow thinking mode and to reframe
how I thought about it.
So that was very helpful.

(28:11):
I have one verse that I had justthought of recently from
Lamentations and kind ofthinking of how God allows this.
But it wasn't the initialcreation in the Garden of Eden.
You know, the world is just notperfect and we we have sin and
we have problems and struggles,and yet he works through it and

(28:33):
again has brought us to thispoint of like a deeper love and
learning to be assertive that Iwasn't before, and treasuring
the small things and so justseeing how God can work through
those things for everyone'sbenefit.

Your mention of creation and Eden and perfection
just made me think kind oftoward the other end of things,
that all of us have things thatwe're looking forward to about
heaven, about the resurrection.
I imagine you have a slightlydifferent perspective on that in
terms of what it's going to belike for you at the resurrection
, seeing Nicole.

You think of leaping for joy and dancing and
just all those kind of movementsthat go with happiness and that
she'll be able to do, able todo.
We get a lot of support fromJohnny Erickson, tata too, and

(29:33):
all that she's done in herministry and how many years in
the wheelchair and the lessonson suffering, and you know she
talks too about just walking andpraising the Lord, and so that
whole image just brings a lot ofhappiness.

Yeah, Well, you know, as we kind of close out
this episode and wrap things upa little bit, you know, our
podcast here is called LifeChallenges and really what we
always, you know, want to try tohit on is that, even though
there are these challengingmoments in life, God is walking

(30:08):
through it all the time with usand also just like that
importance of life too.
And so is there just anythingyou know to just let our
listeners know, or would youlike them to know, on just the
importance of life, theimportance of your daughter's

(30:29):
life, your own life or just lifein general?

she was born and just the offer to not be treated
.
After that I ended up servingfor a brief time on the panel.
I think we met in Madisondeveloping some of the baby
dough laws where, like back then, there was a child with Down
syndrome that wasn't treated fortheir heart defect and allowed
to die just because of theirdisability, and just helping to
show that it's still a personfirst and all the blessings that

(31:14):
come from that.
And yes, the disability can bevery challenging and it goes on.
You become a perpetual parent,as one of her doctors said.
Parenting goes on, just in adifferent format, but it is the
person first and the joys andcreation by God that you can

(31:35):
just love and find somethingdeep within an inner strength
that you didn't know you had.

Well, thank you so much, Lindy.
We really appreciate you takingthe time to talk with us today.
It was really wonderful to haveyou on the podcast.
Thank you so much, and we thankall of our listeners, too, for
joining us, and if you have anyquestions on this topic or any
others, you can reach us atlifechallengesus, and we look

(32:03):
forward to having you back nexttime.
Thanks a lot, bye.

Paul Snamiska (32:07):
Thank you for joining us for this episode of
the Life Challenges podcast fromChristian Life Resources.
Please consider subscribing tothis podcast, giving us a review
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issues.
Our goal is to help you throughthese tough topics and we want

(32:27):
you to know we're here to help.
You can submit your questions,as well as comments or
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In addition to the podcasts, weinclude other valuable
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(32:50):
For more about our parentorganization, please visit
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May God give you wisdom, love,strength and peace in Christ for
every life challenge.

Unseen Strengths: Parenting Kids with Special Needs with Lindy Spencer

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