A Poster Girl for Disability

Four of us, Father-to-be of Pearl, a small Rab and preteen Glory on holiday. Visiting a highly recommended gastropub. A treat.

As this is not trip advisor and was eleven years ago I shan’t share the location.

The manager did not seem keen on customers, the service was at a snail’s pace, nothing on the menu appeared to be available, and according to F-t-boP, the floor in the mens toilets was not safe for sandals wearers. Lovely.

As we sat fuming a couple arrived. A man, in a wheelchair with a neurological condition, and his partner.

As we longed for distraction from the diabolical service, and we are inveterate people watchers, we were fascinated to see him using his computer to communicate.

Ten years ago this was even more unusual than it would be today.

Of course, I mentioned it to the children, I was a Speech Therapist who specialized in neurological conditions, it was a break from moaning about the service, and it was educational.

After an argument about whether ice cream was available on its own, as well as with apple pie, we paid up, relieved to be escaping.

The children got up and ran over to the couple and stood smiling at them shyly and looking at the computer. I quickly joined them.

“I’m sorry they are interested in your communicator”

Mrs. scowled angrily at me.

“We are trying to eat”

We left, tails between our legs, a horrid end to an awful trip.

I’ve thought about this incident a lot since having Pearl. At the time I was deeply hurt, couldn’t they see we were really interested and trying to make a connection?

Now I think I was probably unforgivably ableist.

Does every trip out for a disabled adult or child have to be an educational experience for society at large?

Do ‘the disabled’ (and if you hear anyone refer to a people group in that way, draw your own conclusions) have a responsibility to be charming, well presented, and approachable at all times?

Should they be expected to represent not just themselves, but the whole disabled community every time they venture out to the supermarket? Hell no.

Personally I want the freedom to be messy, tidy, made up, fresh faced, happy, miserable, charming or sweary as the mood takes me.

If I become disabled (and a fair percentage of us will, through ageing alone) I don’t think that is going to change.

The first time we had personal experience of this was during Pearl’s statementing process.

I was speaking to the lovely Educational Psychologist and telling her I was fearful that Pearl’s mainstream nursery would struggle, as they had no experience of disability.

Her response, that it would be a very good experience for all of them, was no doubt true, but not what I wanted to hear.

‘I don’t want her to be a poster girl for disability, I just want her to be a little girl” I told Father of Pearl when I got home.

Like it or not, wherever we go, whatever we do, we do attract interest.

Admitedly this is added to by Pearl patting people on the shoulder or grabbing women’s handbags (I taught her well…)

So how do we deal with it?

I do not want to sit at home avoiding stares and questions. Nor do I always want to explain Pearl’s communication book or diagnosis, but I would rather she was out there in the world, than tucked away out of sight.

I suppose a balance has to be struck

A wise researcher once asked me what I wanted the world to be like in terms of inclusion.

“A CBeebies world” I answered.

Shortly before Pearl was born, thanks largely to Something Special and Mr Tumble, different abilities have been very well represented on childrens BBC.

In all CBeebies programmes there is a huge range of children, glorious to behold, with frames, crutches, white sticks, hearing aids and all manner of genetic conditions.

Graduate to adult TV and there are articles on how inclusive this soap is to have this or that actor, with a disability. Not on CBeebies. They are just there. No fanfare, no overt educational message, just included.

That in the end is what I want for my Pearl, her friends and the Pearls of this world.

Not the constant requirement to be an ambassador for disability.



A CBeebies world.

Please Don’t Forget Me

I know that you probably think I don’t want to talk about your daily upsets; that your washing pile just won’t disappear, now your child talks you want a moments peace, that your child has a cold and is up all night and you just want to sleep.

The thing is it is one of the many things I want and sort of need.

My life is not normal, it has been turned upside down, inside out and shaken all about, I have ended up in a destination I never ever thought I would be in and I am lost.

I need the normality of talking about the childhood sniffles, that the kid at nursery cut your bundle of joys hair, that the boss at work won’t let you eat at your desk anymore.

It brings me back to normality for that moment in time.

It is bringing me back into my old life of no stress, of no worry about the next appointments and the next round of testing.

Talking about normal, somewhat ‘boring’ topics makes me for that 5 minutes forget that my child potentially has a life limiting condition, it makes me forget that my child’s life is not what I would wish on my worst enemy.

Yet those normal conversations are getting fewer and far between.

Most people generally ask about my baby’s appointments and what is happening now, which don’t get me wrong is lovely that people care enough to ask, but that is it, that is the extent of their conversation.

It is almost like I have a sign above me stating that I cannot handle a normal conversation without ending up in jealous tears as that’s what I wished my worries and concerns are.

I love my daughter and I can’t imagine her any other way.

I would love to take her place and I would never not want her around just so I had my ‘old’ life back, but I sure wish I had the old conversations.

Please do not forget about me, please don’t let me fade away and just be the mother of a disabled child.

I am still me, my child may not be the same as yours now but I am still here.

An Unpredictable Life

“Hasn’t she got rosy red cheeks!? Is she teething or is she always like that?”

I get this question a lot. My answer? Like most questions… my answer depends on the kind of day I am having.

Why she goes red like this? Really I have no idea. In a way yes, she is teething. She is almost 4 and doesn’t yet have all of her teeth.

Maybe a combination of her cerebral palsy diagnosis perhaps slowly the rate of growth of teeth, and maybe because she isn’t orally fed and nothing is wearing down her gums.

Or maybe it’s autonomic dysfunction – sometimes her temperature isn’t as well regulated as it is for able bodied people. She often gets very cold extremities and very hot cheeks.

Perhaps it is food related? Her stomach can’t seem to digest most things. Maybe it is some sort of allergy or intolerance? It isn’t slapped cheek, it could be keratosis pilaris I am told.

Maybe she is flushed because she is tired? Sometimes just one cheek is red.

You get the point.

Every query anyone has about Amy can open a can of worms. There are so many things I don’t know.

There are things she adores one moment, but will scream and cry at the next.

Life is not predictable for us and planning is hard.

One thing that is predictable at the moment is the decline in her mood at about 4pm. Often this is due to tiredness from a busy day of non-stop movement and refusal to nap.

Amy has dyskinetic cerebral palsy and her movements are constant, it looks exhausting. But switching off isn’t easy for her.

So even if she is exhausted it is easier to just cry and get progressively angrier as the day goes on.

We have tried everything.

Until 4PM, we spend the day walking round shopping centres with her.

She wants to be on the go all the time.

Staying in at home is getting harder and harder.

She wants to see the world and have a lot going on around her. Many people have told me it is time for “tough love” and that she can’t always entirely dictate what we do each day.

I am guilty sometimes of pandering to her every whim. But I feel it is my duty to make sure she is happy and we all just do our best however we can.

We tried to go to a friend’s birthday party at a soft play centre recently. It was at 4:30. I had to mentally prepare myself all day for the inevitable outbursts it was likely to cause.

I didn’t want apprehension to get the better of me, and I didn’t want her to miss the opportunity to have a potentially great time.

As it turns out, my instincts were right. Within moments of entering the centre she became very red and overwhelmed. We tried to take her on slides, we tried to go in the calming sensory room.

My heart ached as I watched the other children her age completely unfazed and delighted to be there. I try not to let it play on my mind too much… dwelling isn’t conducive to a happy life.

We eventually admitted defeat after 20 minutes or so and retreated home to begin the bed time routine.

I apologised to Amy for taking her somewhere I thought she might be happy.

I explained why I did it and that hopefully one day we will be able to leave the house in the evenings.

I hoped she understood what I said and knows that all I ever want is the best for her.

I reflected on the bonfire displays missed, the pantomime invites declined, the meals out we’ve never partaken in.

The times we have had to leave somewhere after trying our hardest to appease her so we could selfishly see people for longer.

I let out a sigh, kissed her goodnight and sulked on the sofa, annoyed with myself for letting my negative emotions get the better of me.

I am her mum… her dad and I are the ones who are meant to know her best.

The course of action to make her life great is fully on us. It’s a terrifying responsibility at times and you live in constant fear that you are doing something wrong.

Lately her irritability has been next level. To the point of respite asking me to get her checked out in hospital, and nursery calling saying she is in gastric distress and needing paracetamol.

It has taken a huge toll on my mental health and I actually went to the GP last week to trial some different anxiety medication. I am no use to Amy if I fall apart every time she falls apart.

People always say that “your crying child isn’t giving YOU a hard time, THEY are having a hard time”. But the reality is for most parents that their child is not happy then no one else in the house is.

Tomorrow we are back at the city hospital to insert a new GJ button (feeding tube that bypasses the stomach and goes through to the bowel) in the hope that maybe this is the cause of her increased disconcertion.

But like I said… guess work. All we can do is try different things and hope that something, somehow works.

National Hug Day

Over the years we haven’t had many big milestones to celebrate with William, but the small ones have been incredible and well worth celebrating.

The day he left hospital.

First smiles, first laugh, first teeth, first holiday.

The first time he slept through the night… that one was a long time coming!

The first time he ate a whole meal without throwing up.

His first day at school and first day on the school bus.

There have been too many little milestones to remember but every single one has been incredible.

But now we’ve reached the one milestone I don’t want to celebrate.

One I was hoping was a long way off in the future.

I knew it was coming but was hoping we weren’t there quite yet.

The milestone I’m talking about is the one where he is getting too big.  Too heavy and difficult for me to lift anymore.

William is almost 9 now, he weighs about 22kg and while his weight is still manageable, he is tall and awkward to manage.  He doesn’t support his own weight and his limbs are all over the place!

Physically, I can lift him, I am strong enough, but every muscle in my body works overtime when I do and last year I injured myself.

This year I have to face the reality that 2018 is likely to be the year when things will need to change.

The year I will have to stop lifting and carrying my, ‘baby’, because he’s just too grown up.

And it’s making me sad.  Sad at the cuddles I’ll miss out on, because lifting and carrying him really is just another way to get a sneaky hug!

I’m sad that my boy might wonder why I’ve stopped.  Will he think I don’t love him as much anymore?

I’m sure he won’t but while he is used to being hoisted at school, at home we tend to only hoist him into the bath or the hot tub.

21st January is national hug day, and it’ll be a mix of emotions for me.

But really, it’s just another excuse to scoop my boy up and give him a big cuddle to make up for all the missed ones in the future.

5 Things I Am Tired of Hearing as a Parent of a Disabled Child

My son, William, has quadriplegic cerebral palsy and is a full-time wheelchair user.

His disability is at the most severe end of the scale which means he can’t sit or stand up.

That makes life awkward but we make the best of it and the only time we face real issues is when we venture out of the house.

Because of his disabilities I have become a big advocate for changing places toilets because without them it is almost impossible for him to use a toilet when we go out.

He can’t stand up so I need to lay him down to remove his clothes and then lift him onto the toilet.  He is almost 9 so he’s pretty heavy already but when he’s bigger it’ll be impossible for me to lift him.

And without a changing places toilet, where am I meant to lay him down?

The toilet floor?

While asking businesses and services to provide changing places toilets I have become used to hearing excuse after excuse as to why they can’t or won’t upgrade their facilities.

But these are the five things I am really tired of hearing…

1. We are trialling Changing Places toilets in some of our stores.

This is something I’ve been hearing from Tesco for over 3 years now, but they still have no intention of installing them in their other stores.

But when I am standing in their store sobbing with my son screaming next to me because he needs the toilet, you’d expect them to move on from trials and see the need in front of their faces.

I set up a petition to supermarkets recently, you can sign it here.

2. We are DDA compliant

I can’t tell you how angry this response makes me.  Firstly, the DDA (disability discrimination act) was replaced by the Equality Act 2010 8 years ago!

However, regardless of them believing they are compliant, I would hope that the knowledge that a disabled child has to lay on their dirty toilet floors might make them realise it isn’t enough to simply be compliant.

I’d hope they’d want to go over and above that legislation.  But they don’t, and it breaks my heart that my son isn’t considered an important enough customer to make changes to provide for him.

3. Changing places toilets are more suited to a shopping centre

This once confuses me so much because it usually comes from a large business who provides toilets to all their customers, often with 2 disabled toilets, baby changing facilities and a baby feeding room.

If they don’t want those customers to leave their store, for fear they won’t return and spend their money, why would they want us to leave to go elsewhere?

4. We understand the need for changing places toilets

Yep sounds bizarre that this would wind me up doesn’t it!  But it is almost always followed by a bit BUT… but we don’t have the space / budget / etc.

And usually involves some other platitudes that are meant to make me think they really do care about the fact my son can’t use a toilet in their stores when really I know they don’t give two hoots.

If they did, this sentence would end with, “and we will be installing one ASAP”, instead of, “but…”

5. We comply with building regulations

That may well be the case but that doesn’t help my son!  Just because building regulations don’t call for a changing places toilet it doesn’t mean it isn’t vital for customers.

Baby changing and feeding rooms are also not required under building regulations but that doesn’t stop businesses from providing them for customers or visitors!

You can sign this petition to call on the government to change building regulations to include changing places toilets.

Groundhog Day

When you have an Autistic child routine is needed and I have started to feel like I am in the movie.

Each day I wake up, I watch the same TV show and watch my son eat the same breakfast. I have the same arguments about putting on coats, sunhats or even suitable shoes. I watch as he trundles off to school.

You would have thought when my son had left for school that would meant that I could do what I wanted. This is not the case.

When the school run is done there is so much work and most is just the same day in and day out.

The house must be perfect for when my son comes in. Everything must be in its place.

All washing and loud housework must be done while he is out of the house due to the loudness of the washing machine and tumble dryer.

All sheets must be washed and put back onto the beds before my son gets home. The fridge must be filled with the right food.

Along with many other things that you don’t even realise you are doing it, until someone asks “what are you doing?”

Even the weekends when schools are shut, are the same week in week out. You could almost live the day with your eyes closed and know exactly where your child is.

This has been our life for nearly 6 years now but that doesn’t make Ground Hog Day any easier.

It doesn’t make it any easier that you know how long to the minute it takes to strip down the bed, wash it and dry it.

It doesn’t make it any easier that you know when the children get home from school my son will need to go upstairs and completely shut the world out and watch tv.

Nothing can prepare you for living Ground Hog Day.

The only difference between my life and the film, is that the main character in the film wanted out and was finding a solution, whereas my life will continue in this cycle for years to come, only changing probably due to circumstances beyond his control.

I will live through this routine as long as I need to and as long as my son needs me to.

Keeping your Cool

In fact, I found myself so overwhelmed and impressed that I feel I’ve developed an even deeper inferiority complex and now feel a bit shy to even try and write a post.

But given that us carers/special needs parents are a minority, I shall persevere…

The point of this post is to talk about anger. Lately I have found myself so irritable I can barely be around myself or my own thoughts. I’m not sure if it’s PTSD, anxiety, stress, or all of it combined.

But I don’t like the person it makes me become. I can be snappy around those I love most in spite of how much I try to internalise it or let out in different ways.

Anger is a really ugly emotion. When I’m angry I often end up in in altercations over silly things.

A few nights ago I found myself in a pointless argument with a pizza company over a mistake I made whilst ordering. The man became so argumentative that it provoked me further.

I almost wish he had just said whatever it was I needed to hear to make me feel better and shut me up. The pizza turned up burned so maybe that was karma for my bad attitude.

I’ve had similar conversations with doctors, secretaries and various other parts of my daughters’ care.

The fact is, my anger that I have built up over however long ends up projected onto some person who isn’t expecting it. The slightest bit of unkindness or unhelpfulness and I turn into the incredible hulk.

Afterwards I feel so silly. I think of how much I should have just kept calm. I need; and everyone needs to remember:

– Always be kind! Kindness is free, and it is contagious. Every time I have a positive encounter I can feel myself start to feel a bit better about myself and the world around me.

Generally I try to be kind all of the time, but every now and then the anxiety monster within takes over, I need to reel it in, and breathe. Just breathe.

– Will it matter five minutes from now? Will it matter in a few hours? Will it matter tomorrow?

Today, two people became quite aggressive with me because I was turning my car around and they were getting impatient. I got so upset and angry that once I was out of their line of vision I cried and cried.

Silly really… because it didn’t matter. Their inability to wait for 5 seconds shouldn’t ruin my whole day.

Things like that need to be water off a ducks’ back.

– Don’t isolate yourself. Just because you’re hurting and feeling down doesn’t mean that everyone out there is bad.

I feel that for every bad egg out there, there are 5 or so well meaning, kind-hearted individuals. It’s so tempting sometimes to just hide away. No one can hurt you when you hide away. But it’s lonely.

Loneliness breeds sadness, and sadness is the worst. Call a friend, listen to a great song, read a good book, do whatever you need to do to calm down.

– Don’t sweat the small things. Carers and special needs parents in particular need to conserve as much energy as possible.

I find that anger, sadness, bitterness, jealousy ie. all negative emotions are so draining on vital resources. Our time is precious, our lives are often fully dictated by the needs of another.

Little things like rude secretaries, road rage, traffic etc… they don’t matter. Sometimes these little things all build up and send us over the edge, but really… we have much bigger fights to fight.

Getting the right care for our children, making sure their education is going well, preventing future hip issues with physio etc.

We have to make a lot of tough decisions and follow a path we didn’t choose… the small stuff is just that. We’ve been through so much that really these things shouldn’t phase us.

– Say no to overwhelming demands – Sometimes my weekly schedule sets off my anxiety. So many appointments popping up, so much paperwork to contend with and calls to make.

I am trying (trying being the key word) to eliminate any unnecessary appointments… things that get in the way of “normal” life.

Sometimes I can feel a great relief at cancelling plans just because my head is over running with thoughts and I know I won’t be able to focus and be calm.

It’s easy to feel guilty about it but we all need alone time, time to be a bit introspective and ruminate.

I want to please everyone and at times can become a bit of a martyr with my obsessive need to help others and be liked. Self care is important!

– My feelings are valid. Like many others I find myself often deeply moved emotionally and caring for others so much that it can even have a physiological effect on my health.

Other times, I find myself numb and vacant, incapable of emotion. Stress will do that to you.

I beat myself up for it in my mind, wishing I could just feel the normal amount of emotion… but the truth is, when you have PTSD and anxiety and lead a chaotic life style, your brain chemistry may alter from time to time!

It’s okay to go from one extreme to another. Just ride it out, breathe, and don’t blame yourself.

I plan to visit my GP soon as sometimes medication and breathing techniques alone aren’t enough to help us qualm those anxious thoughts and snappy behaviour.

I want to and need to become a better, more patient person. But I also need to accept that stress is a part of our lives and not to beat myself up when I am struggling.

Does anyone else out there find themselves particularly irritable? What do you do to keep your cool?

The Kindness of Strangers

All of us (bar Pearl) had flu, colds, infections and stomach bugs, with hardly a day off in between.

I couldn’t exercise and found (who knew?) that if you eat more than usual while doing precisely nothing your clothes inexplicably shrink.

It was with some relief that January and better health rolled around.

The first hospital appointment of the year, on the second of January, seemed like a return to normality.

As Pearl grows older it seems likely that she has a degree of ASD in with the mix of physical, cognitive and sensory problems. She is very routine dependent and her understanding is very experienced based.

We are well used to seeing Pearl’s marvelous orthopaedic surgeon, and Pearl is usually very cooperative. We park up, she gets into her wheelchair (it’s a long walk from the car park to outpatients).

The first working day of 2018 was different. Pearl’s Kaye walker (a kind of a walking frame on wheels) was just visible in the back of the car.

On the hour-long journey, she insistently pointed at it and shouted.

“Do you want to walk when we get there?”

She deploys her only recognizable word.


“OK. We’ll see if we have time.”

How blithely I make this throwaway comment.

We arrived. There was time. Pearl was insistent.

Now usually when I say Pearl goes in the wheelchair, actually we go straight to the shop and buy fruit and a biscuit for distraction purposes.

Pearl set off in her walker. I hadn’t realized how much she’d grown over Christmas and it wasn’t providing her with much support.

At some points, she was carrying it around her. It was frankly not ideal.

After getting to the front of the hospital with some difficulty she stopped and signed biscuit. We still had at least another 5 minutes before even entering the hospital, let alone booking in and getting to the clinic.

I looked at my watch.

“I have some biscuits with me” (I was a Girl Guide and the motto, “Be Prepared” is engraved on my heart)

“We’ll have them when we get to the waiting room”

This is clearly not the right answer. Screaming, suddenly and out of nowhere, starts. Proper blood curdling, being murdered screaming, emanating from my usually biddable and cheerful child.

Now I’m in trouble.

Is she in pain? It is a long walk, the walker isn’t supporting her.

Is she expecting the biscuit we usually buy?

Is she suffering sensory overload? A lot of people are leaving the hospital and streaming past us. It is very noisy.

Or is she just in a bad mood?

I have no idea, I can’t use her PODD communication book because my hands are full of the stuff we might need for any and every eventuality.

I can’t take her back to the car for her chair, it’s too far and we’ll be late. Pearl will not move an inch forward and now she is grabbing random passing strangers.

It had all been going so well.

Suddenly a woman with blue hair, piercings, and fabulous boots walks straight towards us.

I get ready to stop Pearl grabbing her when this stylish angel looks straight at me and says, “Can I help?”

This is only the second time this has only happened to me in eleven years and thousands of meltdowns, so I’m a little nonplussed.

My immediate, and rather pathetic response.

“I don’t know. I’d love some help, but I don’t know what’s wrong, I don’t know what you could do”

Resourceful. I know.

Then the inner Girl Guide kicks in. I have an idea.

This amazing stranger agrees to stand with a completely hysterical child while I run back to the car, at some speed, for the wheelchair.

I explain all this to Pearl, who is really beyond hearing at this point.

I check again with this magical apparition.

“Are you sure?”

She is!

I leave them with the emergency biscuits and make a run for it.,

In the distance, I can hear her, gently explaining.

“Mum will be back in a minute. Would you like a biscuit? No? You want a hug?”

I turn to see Pearl fling herself into this person’s arms and sob messily on her shoulder.

When I return, she is still cuddling a calmed Pearl and speaking to her with great gentleness.

This extraordinary individual then proceeds to apologize for not knowing how to help Pearl into her chair, which is really not a problem at all, and suggests she stays with her while I take the walker back to the car.

She does.

By the time I return, everything has returned to normal.

Biscuits have been consumed, legs are rested. All is well

So, when a blue-haired angel appears on the front drive of Stoke City University Hospital, how do you show your appreciation?

She deserved an Oscar, a Damehood, at the very least a cup of coffee, but we had an appointment to attend.

Instead, I touch her arm look her in the eye, and say.

“You have no idea how grateful I am for your help”

“S’alright, no bother”

She smiles, turns and fades into the crowd.

So, oh stylish one, wherever you are, whatever your experience that led you to help this child, on this day, I thank you from the bottom of my tired, overwrought mothers heart.

You saw through all the screaming to exactly the wonderful person my small girl is.

Saw through all my attempts to remain calm and capable to exactly where I was.

For this, I salute you, and will never forget you.

Thank you.

It’s Okay to Mourn

It’s OK to mourn the life I had envisaged for my daughter, my other children and myself.

It’s ok to mourn and cry out loud to say this isn’t how life is meant to be.

I should just be worried about what playschool has the best reports not which playgroup has the equipment to support my daughter in her disabilities.

I should be worrying about my daughter’s first cold, not worried about the fact her kidneys don’t work how they should be.

I shouldn’t worry about meeting children that are the same age and wondering if that day I will be strong enough emotionally not to cry as they are all walking around, and talking where as my baby isn’t.

It isn’t the fact I am jealous and don’t find joy in seeing this, but it reminds me how delayed my child is, how different my baby’s life is going to be.

How hard she must work to achieve things that should come naturally and with ease.

It’s ok to mourn for the stress-free childhood I had wanted for my other children, the sort of childhood where they can run and play in the woods chasing each other without a worry in the world except for how messy they can get.

We have started to tell them little bits about their sister’s condition as they have noticed she isn’t as developed as she should be.

They shouldn’t have to worry about this, they shouldn’t have to see their parents rush to hospital as their sister can’t move, they shouldn’t have to worry about making their sister laugh as when she does she struggles to breathe as her throat closes causing her to suffocate.

They shouldn’t have to worry about the fact their sister doesn’t understand them, that their sister just looks puzzled when they talk to her.

They should be getting frustrated that their sister is messing up their room, that their sister is drawing over their school books or trying to use their bikes even though she is too young and too small.

They shouldn’t even know that children can be disabled. Yet they live with it every day.

It’s OK to mourn that my life’s plans have stopped abruptly.  That we have had to move from our home to a new place to accommodate my daughter’s needs.

It’s ok to mourn the fact that my career came to an abrupt stop and that although I love my little part time job, it is not what I had envisaged for myself at this point in life, my qualifications sitting in a folder, for the foreseeable future not seeing the sunlight.

It’s ok to mourn the relationship I used to have with my husband, one where it wasn’t stressed, one where we laughed every day, one where we knew what the future held.

I love my daughter, I would go to the moon and back for her, but that doesn’t mean I can’t mourn for what I thought our life should be.