- Hello, lovely people,
and welcome to a classic Jessica In Bed video.
Shan't lie, this is day 12 of my current migraine.
This video may follow a non-linear process
because if you if you don't know what migraine is,
what a life you've lived, congratulations.
I pray that you continue need to live in this blessed way.
A migraine for me is both like being on fire
and yet having someone drilling
into my skull with an ice pick.
Both of these things are somehow true.
And at the same time,
all of my thoughts have been put into a blender
and just voom.
I'm sure I have a video about migraines.
I don't remember, but I'm sure I do.
It's in the card here,
and I'll put it in a link in the description as well.
Why do I have a migraine for 12 days? Great question.
Because I have a wonky jaw
due to having a connective tissue disorder.
Cool disability.
And I got Botox in my jaw in this big muscle here
to stop it working
so that this other side of my face would start working,
and my face is basically reconfiguring itself.
And that is painful and is making my neck also painful
and my shoulders also painful.
Fun fact, I also have a scoliosis
that means my neck goes the wrong way.
Yeah, it's just all going wrong up in here.
That's not even the point of this video.
No, today we're going to be talking about
parenting with a chronic illness/disability.
Yeah, how do we do it?
What's it like? What's my experience?
I am the mother of, oh, when this video comes out,
a 10 month old!
How did that happen?
He was just baby two days ago. I mean he is a baby.
He's just his own little person. Oh God, I love him so much.
This is random. Where were we?
This is not what this was about. Hang on.
I asked the question on my Instagram @jessicaoutofthecloset
in an attempt to help me
with some semblance of structure in this video.
And I'm going to be answering some of your questions,
my thoughts, my experiences, any tips,
and just being kind of truthful, open, honest.
I've lived with illness my whole life,
so going into parenting,
it was something that we knew
we were going to be dealing with.
I didn't give birth to our son, my wife did,
so that wasn't something that we had to contend with.
We didn't have to think, "Oh gosh, pregnancy,"
but we did have to think about having a small child,
often think of taking care of my body
as having a baby that I had to look after.
I remember going to university
and feeling like everyone else is at university having fun
and I feel like I've come to university
with a baby that I have to look after.
That was my body.
So one of the first questions that we got is,
"Did you and Claudia have a plan beforehand
on how to deal with bad sick days or is it more on the fly?"
There were things going into having a child
that we obviously sat down and thought about,
and were very clear on.
And that included things like, for instance, sleep.
I take medication at night that knocks me out.
And a number of times I would wake up
when Claudia and Rupert woke up at 3:00 a.m.
and be like, "I'll do it.
I'll change him. I'll change him."
And, oh God, wait, I shouldn't move like that.
Anyway, wait, take a drink.
And I'd be like, "Ah, I'll change him. I'll change him."
And then I'd stand up
and then I'd just kind of collapse down like some jelly.
So we worked out that it was more helpful
if I stayed up later before going to sleep
and did the nighttime
while she got in some good hours of sleep.
And I looked after him until like half midnight
and then I went to sleep.
But I woke up and then she had some good hours of sleep
and I took him downstairs.
So that way we each had the same number
of block hours of sleep,
we were just breaking it up differently.
So there were always little workarounds
and things like that that you have to be aware of.
And it definitely wasn't something
that we entered into lightly.
When we started seriously talking about trying for a baby,
I had a bit of a crisis about,
"Oh my God, can I actually do this?"
And I freaked out about it and Claudia completely didn't.
I was like, "How are you totally okay with this?
Why are you not freaked out?"
And she was just like,
"Oh, I did that already before we got married."
I was like, "What?"
She's like, "Yeah, yeah, yeah, no.
Before we got married, I obviously was like,
'Well if I marry her,
I'm gonna have to have children with her.
So can she cope? Yeah, she can.'"
And then she finished my freak out by being like,
"Yeah, don't worry about it."
But I have a very changeable condition
in that the thing that is wrong with me changes.
So it might be that I have low energy
or it might be a day
when I'm less able to be self-sufficient
because what's wrong with me might be more of an injury
where I am physically incapable
of moving myself from place to place,
in which case she needs to be much more hands on.
And then she might require some more help with Rupert,
or alternatively, might require some more help with me.
So I have a lovely assistant called Paige,
who's camera shy or at least is for the moment.
My old assistant Clara was very camera shy to start with,
and now she has her own Instagram with her wife,
so see how these things end up. (chuckles)
So Paige works from our house
five days a week for six hours each day.
And she is amazing.
Helps me run my life in a multitude of ways.
My goodness.
And if I'm low energy that day,
she's able to like respond to my emails.
Brilliant. She gets stuff done.
If it's a case of, oh no, Claudia needs to be more hands on
and really helping me with stuff but we don't have food,
we can be like, "Paige, could you run and get us some food?
Thank you very much."
There are too many questions
for me to be taking this long answering them.
"How do you deal with judgments from other people
about being a disabled/ill parent?"
Well, I was gonna say I don't care.
That was my first response.
And then I was like, "Oh wait, Jessica, don't you?
I think you do care."
But now I'm actually interrogating that response.
No, I don't, wait, no. Huh, that's interesting.
Like, I don't think that Rupert is lacking anything
because he has a disabled mother
in the same way that I don't think he's lacking anything
because he has two mothers.
If someone's going to be disapproving
of either of those things,
I don't, I really thought I would care.
I thought that it would matter more to me
and it did, it definitely did.
While Claudia was pregnant to when we first had him,
I felt like I had a lot to prove.
Really hate, still hate
when people that I know
do this thing where they're like,
"It's so lovely that you have this,
you know, because it's you."
Yes, I think I've found that
the fear was greater than the actual experience.
Feel a bit sick now. Excellent.
"I'm afraid I won't be able to rest 100% or parent 100%.
How do you balance either?"
Well, firstly, a happy parent means a happy child.
One thing that is really vital to looking after a baby
is actually being able to do that,
to have the energy to be there to do it.
And it does take a lot of energy,
which means if you are the type of person
who requires rest in order to build back your energy stores,
that you need to let yourself rest.
And I'm not a great rester, believe me.
I hate to get told by my wife, "Like it's okay to rest."
She's a terrible rester as well.
Gotta say that, gotta say that.
It's always gonna be difficult to find a balance
between parenting and resting.
Building resting into your parenting
is something that I have found quite useful.
As a Montessori family, we have...
I know, long it take in the video to get to Montessori?
We have a lot of things in our house that are at child level
because it means that he is more able to be independent,
he can access his own thing.
And what that means
is that I spend time getting down to his level.
So I'm on the floor a lot of the time.
I spend a lot of my time lying on the floor with him.
Very good for my resting.
Do a lot of time lying on my back,
really stretches out my spine.
And he just tends to play around me,
which then leads us on to our next question.
"How do you build family time
that is inclusive of your current capabilities?"
If I am not feeling 100%,
I spend just the same amount of time with Rupert,
but I'm just doing it to whatever level
I'm able to do right now.
The activity changes, but my time with him doesn't change.
So Claudia and I have a routine every single morning.
One of us goes downstairs and does the dogs
and the other one goes down and does Rupert.
Well, sometimes one of us does both.
Quite often I'll try and do both so that she can sleep,
especially if I know she's had to get up in the night
because Rupert needed to get fed,
if he didn't manage to sleep through.
If it's a day where I'm not feeling great
and I'm not up to a morning,
then that's a lot of quality time
that I would've missed out on.
So instead Claudia gets up and she does that stuff with him,
but she makes sure that I have
another bit of the morning with him.
She'll bring him to me and we'll play together
in a way that suits my current abilities.
One of the best bonding things
that we do together is read books,
and quite a few questions were like,
"When you have terrible migraines,
how do you cope with a baby?
Babies are so loud."
Fortunately we sign, which is pretty handy.
I exclusively sign with Rupert if Claudia isn't there,
which means that we don't use our voices.
So he doesn't use his voice with me if Claudia isn't there.
So sometimes I'm like, "Can you go away, please,
so he'll stop talking."
Because even without my hearing aids,
I still get like a bit of, what's this?
This is the representation of noise that I hear.
I don't hear distinguishable noise that makes words verbal.
But there we go.
So book reading is a really great bonding activity
and I sign them all to him.
He loves to get involved.
He turns the pages. He lifts the flaps.
He signs words back to me.
One of his favorite words is rain,
so he will sign that back whenever he sees it.
If we're more out and about
if I'm feeling up to it but not quite enough up to it,
we can always take my electric wheelchair,
pop him on my lap,
and he gets a ride around the park or shopping center.
But yeah, one of the questions was,
"How do you deal with having your partner
taking care of your child?
Do you feel guilt?"
I would say that
I feel guilt Claudia,
but not in a way is related
to my being disabled parent.
I'd say it's more that I'm the working parent
and she's the parent staying at home.
Newsflash, Claudia's not gonna be a dentist anymore
because childcare is ridiculously expensive
and it makes no sense just to work to pay for childcare.
So instead she's gonna work for me, yay!
Which means you can expect lots more
dreamy beautiful slow-mo filming,
'cause that's the stuff she does.
She is my cinematographer.
Claudia takes all the good shots.
Whenever you see something
and it's filmed really nicely, that was Claudia.
If it's bad shaky camera work, that was me.
I think it's really easy to be made to feel guilty
as society that tells you that you're less than
because the models that we're given
for what we need to live up to are very prescriptive.
It's very one size fits all
with no idea of the fact that everybody is different.
We all come from very different situations
and not everyone's gonna have exactly the same possibility
ticking those boxes.
Really what we should be looking at
is that every single person
provides something entirely different
and special in their own right anyway.
We're all human. It's an absolute marvel we exist.
"How do you let go of the guilt
when you're having a prolonged low spoon patch?"
I think one of the wonderful things about having children
is that every day is so long and every year is so short,
whereas before it felt like
if I was having a low spoons patch,
I would be looking at it in terms of,
"God, it's taken so much out of this year."
And now I'm like, it's just today.
Today is what matters, today is what exists.
And it doesn't matter
about whether my energy yesterday was lower or higher.
There is just this right now,
there is just he needs lunch
and he needs someone to sit with him.
That is all there is.
So I think it's been a process,
not of me consciously letting go of the guilt
and consciously letting go of the feeling
of am I going to be an inadequate parent
because I'm disabled,
it's been unconscious process
of be more present through having baby
who does not allow you to be anything but present.
"If something happens, what's your emergency plan?"
Well, we did have to go to A&E
because we thought I had cauda equina
which is a thing that happens in your back.
Spinal cord gets caught or something.
Anyway, it could potentially paralyze you.
My GP was like, "You've got to go to A&E immediately."
Obviously Claudia had Rupert.
Claudia had also had hurt her back
helping me with my hurt back.
We have an emergency plan,
which two amazing friends of ours called Andrew and Naomi
who live quite close by who were like over in a flash,
are excellent human beings
and are the like child-free members of our friendship group.
Pacing with a baby. Great question.
For us, we knew that pacing
and making sure that my energy levels
stayed quite consistent,
and there's a video about pacing up here
and in the description,
which is basically making sure that your energy levels
remain within a boundary that you're comfortable in,
but then you gradually expand that.
Pacing with a baby, we knew that that was something
that we were really gonna have to think about.
We manage my energy generally really quite well.
Even before he was born, we knew that scheduling
was gonna be something that was really important to us.
So we followed a schedule that was set by Rupert.
We sort of watched him to see what he did and how he was,
and then created a schedule around
so that we were doing things at the same time
every single day.
And that way I could be sure
that I was working my medication, my food,
and my own sleep schedule around him
to make sure that I could take care of him
as best that I could.
And that worked really well for Claudia as well
'cause she likes to know the plan.
She's gotta know the plan every single day.
Can you spend down time with Rupert when you're feeling ill?
Like is it more tiring or comforting?"
That's a very insightful question, actually.
I personally find time with him quite comforting.
It's quite nice. He's quite a calm little chap though.
Like we might read books together or we might play.
But his playing's very much like we roll around
or do a little activity.
His favorite game at the moment
is taking pompoms out of a basket
and putting them on a plate,
or he'll like sit with the ball tracker
which is this big ball tracker we have.
And then you just take a ball, put it on the track,
and it goes back and forth and it's like ah!
And he can quite easily
just be kept entertained with that for ages.
The thing that helps my migraines most
is to have my back supported.
So yes, lying on the floor which I do with Rupert,
lying on the floor.
"Why do your migraines last so long?
Not judging, I'm actually just really curious."
You know what? Me too.
I too am curious.
I would love to know the answer to this one.
All right, last question.
"Truthfully, without the positivity
that us chronically ill people have to do,
does it feel like you're missing out?"
Yes, it does.
I don't think that Rupert misses out on anything,
but I do feel like I miss out on some things.
Like I would love, for instance,
to be able to drive.
Driving is something that I really struggle with
that I really want to be able to do.
And I just don't know whether I'll to do it.
I really hope so. I really hope so.
And I love the idea of like,
I wish I just had that like energy
to just take my baby and pop him in the car,
go into town, meet a friend in a cafe.
I mean, you know, COVID, whatever.
But the thing is, COVID has not changed my life that much,
which really says something about my life.
Maybe that will change as he ages.
He is only 10 months old.
I mean, I can always say I feel like I'm missing out
on being able to carry a child and breastfeeding
because I'd love to be able to breastfeed.
That's a much deeper,
that's a much deeper thing for another video.
Obviously there is a lot of positivity
that one has to have as a chronically ill person
because what else are you gonna do?
The aim of this video really
was just to say that don't be scared.
That's it, really. Don't be scared.
I was really scared, before having Rupert, about bad days.
What on earth am I going to do on those days
when I can't cope with myself?
But I found that both that I just had to,
and also that there were just ways that he fit into things.
When Claudia was recovering from her Cesarean,
there was a lot that she couldn't do in the first few weeks
and I suddenly just had to do them.
And boy did it hurt a lot, and I just did it.
And it felt in many ways empowering
but also horrible because my body hurt so much,
but there was something about it that was quite lovely
to see that it was so temporary.
Does that make sense?
Everything with a baby is very temporary.
Children grow very quickly.
And yes, that first bit is hard
and the next bit might be hard for a different reason,
but whatever you have difficulties with,
you are not gonna find all of those hard bits hard
for exactly the same amount.
Along the way,
every single part is also wonderful, is also lovely.
Absolutely wouldn't change anything for the world.
Quite have baby fever. Would have five more if she'd let me.
Definitely not gonna have five more children, don't worry.
Be the von Trapps.
Sending lots of love
to those of you who are also having a bed day
and feeling not your best and brightest.
And I hope see you in my next video. Mwah!
(jaunty music)