When the Children’s Surgery Center Feels Like a Second Home

I sit here in this familiar room, with the brown plastic couches, and windows that look over the busy street below. A T.V monitor situated near the ceiling displays the statues of the little patients behind the big double doors. Patient # 20193, my daughter, is still in the OR.

It is the Children’s Surgery Center at UC Davis in Sacramento, California, and it is a place I know well.

My twelve-year-old daughter Lilly and her seven-year-old brother Chance have had no less than fifteen surgeries between them, and I have sat in this waiting area too many times than I care to count.

I have told too many jokes about how the hospital should implement a frequent flyer program for patients, that they should install a mini bar in the waiting room to take the edge off of the waiting, and how this place is beginning to feel like a second home.

Waiting for your child to come out of surgery is mentally and emotionally exhausting.

I usually travel alone with whichever kid is having a procedure and stay the duration while my husband stays home with our other three kids.

As much as I hate leaving them behind, I need that quiet time to process while sitting in the waiting room, and whichever child is having surgery will need undivided attention afterward.

I usually bring my laptop with me. I fool myself into thinking I’ll get some work done, but I end up indulging in mindless TV on Netflix or Hulu because that is about all my brain can handle right now.

Many have asked me how I can do it.

“I’d be a wreck!” is a common response when I tell someone I am headed down for surgery for one of the kids by myself, especially since the Children’s Surgery Center is over  two hours away from where we live.

I think back to 2015 when both Lilly and Chance underwent major jaw surgery on the same day.

Their ENT doctor, who has done the bulk of their procedures over the years, spent over twelve hours operating on my babies that day.

That was a rare occasion when the whole family went down, and that next week was a blur of going back and forth between the hospital and the hotel next door, my husband and I and our other two boys switching off staying with Lilly and Chance.

Trying to make sure Lilly and Chance were comfortable. Trying to make time for their brothers, Henry and Byron.

Trying to squeeze in a shower and a nap after staying with the kids in the hospital. Trying to navigate the hospital cafeteria with two growing boys who are endlessly hungry.

Compared to the craziness of that week, taking one kid down for surgery by myself almost seems like a piece of cake now.

Despite the circumstances, there is comfort in consistency. I could walk these halls blindfolded. I know where the good seats in the waiting room are- the ones near the electrical outlets and room to stretch.

I know many of the faces behind double doors; many have watched my kids grow up and take the time to come and say “Hi” even if they are not assigned to their case that day. I know my babies are in good hands.

If we have to be frequent flyers in this place, you couldn’t ask for better than that.

Logical Loos

In the last year or so there has been a lot of coverage of the battle for logical loos. We’ve seen strong campaigns from advocates for proper changing places for disabled people in public – the images of disabled people and children being changed on the floors of toilets are both heart breaking and enraging.

This last few weeks have also seen a lot of coverage for the availability of children’s changing tables to Fathers – an issue that plagued me when my 9-year-old was a baby and I was her main carer.

Don’t get me wrong I have seen changing tables in men’s toilets on a very rare occasion but they’re certainly not something you would place your child on.

Usually filthy and/or next to the standing urinals, but it’s not men that aren’t being considered its children. It’s not the carers that aren’t being considered with a lack of changing places, it’s the disabled.

Of course, it’s the Dads and carers that show the frustration but it’s not for us, it’s for the people we love who we see going without the most basic human decency.

Speaking as a Father – The frustration is with the culture that we live in being all about equality and ending sexist views apart from when it comes to men.

Imagine going to a place where the only baby changing facilities are in the men’s toilet, there would probably be outrage.

The place would be named and shamed and called to answer for their oversight, questions would be asked of the designers for the building and the problem would probably be rectified by the end of the month.

It makes us angry not because we don’t feel cared for but because we don’t feel like we can care for our children – not because somebody has failed us but because we feel like we’ve failed them, our children.

If they had a mother with them instead of us, they wouldn’t be crying, they would be changed, and we would carry on with our day but now we have to go home.

Speaking as a Carer – As somebody that cares for a child with a disability I have to accept that people don’t think.

They don’t think about access, about the things they do that they take for granted or the things that they say that are incredibly insensitive – people don’t mean to be thoughtless… they just are.

However, as a carer you must become like a snooker player, you don’t just focus on the shot you’re taking, you have to think of the next 2 or 3 shots in order to stay on the table. Your brain is always a few steps ahead.

What I can’t accept however is when people don’t care, and this is what it’s all about, the lack of care.

Many shops and buildings were probably set up without thinking about the logic of having loos that accommodate everybody – as I said, we’re used to that. However now that the community of carers and disabled people have come to companies about the issue, it’s no longer a lack of thought but a lack of care.

They know the issues now, they just don’t care. This is why the feeling persists that we have to make them care, it goes alongside the fear of – what if we weren’t here to care, or if we’re not in the future?

This week we went to a coffee morning for Mums and Dads of children who tube-feed, we asked staff from the coffee shop in the building about where the changing places toilet was (this is why the building was chosen) and they insisted that there wasn’t one there.

So, we walked to the other end of the building to ask at reception who informed us that it was back the way we came (down the corridor from the coffee shop).

After touring the building to find somebody who knew about the facilities one of the parents said how “lucky” we are to live where we do because we have 8 changing places in the city which is more than most.

8 changing places toilets in the whole city that disabled people can use – there are more toilets than that in most buildings in the city.

Nothing has ever been changed or achieved by those willing to settle for the mediocre and so we mustn’t be satisfied for the disability box to be checked in a way that satisfies minimum requirement when it doesn’t satisfy the needs of those we’re called to stand up for.

Give us logical loos, for the disabled, for fathers and children whose basic needs are not yet fulfilled.

Our Diagnosis Journey

Six years on I can remember the exact moment I opened ‘the’ letter from the geneticist.

There it was in black and white. My son, my precious baby boy, had a very rare genetic disorder

It was something called ARX, aristaless homeobox disorder. Now if you’re like me you will have never heard of this! I did what anyone would do. Yes, I contacted Dr Google!

Now this didn’t help me. This condition is so rare that there are no sites that lay out the symptoms, causes and treatment for ARX. All I could find were coding sites.

I played those words over and over again in my head for days. I had searched for years for something to blame for the horrible things that had happened to my child.

I was still none the wiser.

Would my child be ok? What would his life expectancy be? Will he be able to do what other children can do? Will he live a normal life? The list was endless.

We waited an antagonizing few months before we saw our geneticist. She explained that ARX is rare and there isn’t a lot of research about it. What they could tell us was that it was not a degenerative disorder, so he wouldn’t get worse.

It is a hard to control epilepsy disorder. It can cause lissencephaly, ambiguous genitalia and cognitive impairment.

For Ethan it presents in global developmental delay and hard to control epilepsy.

We are advised to take each day as it comes.

If we can keep Ethan well and get his seizures controlled then he stands more of a chance of living a long happy life.

Ethan’s seizures are the biggest thing for him to deal with. It was described to us that he is always in a state of epilepsy.

His brain is always either preparing for a seizure, having a seizure or recovering from a seizure.

Having a diagnosis allowed me to stop looking for answers. I had my answer to what was causing all of Ethan’s problems. I could stop my search.

My attention then turned to trying to do all I could to give Ethan a full and happy life.

Ethan’s diagnosis does not define him. He is a gorgeous 8-year-old child who just so happens to have a diagnosis of a rare genetic disorder. This will not now and will never stop him from bringing a smile to everyone he meets.

Excluding Inclusion

Inclusion—These nine small letters string together to create a concept that has gained massive
momentum in recent years.

The idea of inclusion packs a powerful punch that just about any advocate for individuals with special needs would rush to position him or herself behind.

Really, what isn’t there to love about inclusion?

It is a wonderful ideology: create accessibility allowing those whose needs differ from the mainstream to engage in activities, routines, relationships, et cetera, that the majority take for granted.

We praise inclusion because it has begun to chisel a gate within the thick barriers of society—but perhaps it is time to smash the barriers all together.

You see, the very need for inclusion itself draws attention to the fact that our society embraces an invisible hierarchy of normal, and we must therefore strive to blend the edges of certain circles and levels into others.

However, imagine a world where there is no need for inclusion because the hierarchy has been abolished—dissolved into unrecognizable fragments in the name of the equality of all human worth and diversity.

What if we chose to strive for the creation of a society where labels of “typical vs non” cease to exist?

Instead of labels and categories, we could discover ourselves as one valuable piece in a collection of humans who dance upon the debris of normal, each one aglow with the radiance of his or her uniqueness both in giftedness and struggle.

What if, instead of patting ourselves on the back for inviting in those whom we perceive as different, we chose to step out and embrace a view we didn’t know existed?

As a Special Education teacher and mom to multiple children with special needs, I have preached inclusion for many years.

Honestly, I probably still will for years to come because in the daily grind of interactions with our current society, inclusion makes a great deal of sense. But we cannot stop there.

More than inclusion, more than simply tolerance, accessibility, or even acceptance, I ache for all of humankind to be seen as completely and whole-heartedly worthwhile of being celebrated, enjoyed, learned from, and valued before ever meeting a single social or societal norm.

While it is not feasible or wise to kick inclusion to the curb entirely, I believe we can take some big swings at the walls while choosing to walk across the gap we try too hard to pull others through.

Acceptance does not always mean giving a person permission to become like ourselves, but giving them permission to recreate what we have become comfortable with.

I Don’t Need to be Fixed I Need to be Heard

I learned something recently that I feel is quite profound.

Sometimes when we struggle and we confide in someone we trust, all we actually want… is for them to validate your feelings, agree with you, and join you in that grief.

I got told once “I’ve given you a list of solutions and you’re choosing to find fault with each one.”

I get it, it’s true, and for the person talking to me I bet it’s really frustrating.

I think what we want at that time (or I do at least) is for someone to go “you know what? Yes. That’s rubbish”. I’m not after a pity party or the sympathy vote; just to know that you understand.

You’re not judging me, you’re not fixing things, you’re acknowledging that yes sometimes things are hard and whether there is a solution to the problem or not… your feelings are valid.

You see lately my anxiety has peaked. Amy’s seizures have me constantly on edge. Every time my phone rings I’m thinking “is it school? Is she in an ambulance? Is everything okay?”.

Every time I have let my guard down recently, something has happened that has pulled the rug out from beneath me and left me face down disoriented and shell shocked.

It’s really easy for someone to tell you to “calm down” or “not worry.” But actually, I don’t CHOOSE to feel this way.

My brain makes me feel this way.

I so often run on adrenaline or exist in fight or flight mode… and until you actually can be inside that person’s head and witness first-hand the physiological and psychological chaos going on in their mind… you simply do not understand.

Our most recent trauma was a couple of weeks ago. I had attended a meeting to discuss Amy’s increased care and health needs and had come out feeling very emotional. Upset at needing extra help, upset that instead of respite someone can’t just wave a magic wand and make this easier; but also guilt.

Guilt that I can’t just do it all myself and that I rely on the help of others so much. Her dad works long hours, and it’s not an option to drop her off so I can catch up on jobs or just have a moment to myself.

I drove away feeling a bit hollow. On this day her dad was off work with a bad tummy bug. The weight of the world was on my shoulders from lack of sleep, everyone being poorly, and just general bleugh-ness as I call it.

I decided to go to the shops and get myself some treats. I deserved treats. I NEEDED treats. I bought my goodies and retreated to my car.

I was just about to switch on the ignition when I saw my phone ringing. School.

Yep. Ambulance. 15 litres of oxygen, struggling to breathe. The usual scenario. I abandoned all plans and rushed to hospital. The feelings of sadness disappeared and were replaced with adrenaline fuelled terror. How scared she must feel. How scared we ALL feel.

I meet her at hospital and we are rushed into resus. Our trips thus far had never involved this. Suddenly I found myself at the back of the room as more nurses and doctors flooded in to her aid.

I felt totally and utterly helpless. I wanted her to know I was there. I wanted her to know that they are there to help her. I wanted the ground to swallow me up.

Eventually her breathing stabilised but they were struggling to cannulate her. In total it took about 13 attempts. The distress and illness brought on a seizure. She needed rescue meds… which of course compromise the breathing they had worked so hard to stabilise.

It was hell. Actual hell. I felt like I couldn’t breathe. Time stood still.

We actually only ended up in for one night. IV fluids, antibiotics, and a nice lot of oxygen seemed to recharge her. We were discharged with antibiotics and sent on our way.

However, the care from home when on antibiotics usually involves A LOT of showers, outfit changes, bedding changes and so on. The physical and emotional toll can be tremendous.

Before I knew it though those days passed and she was back at school as if it never happened.

But that’s when it hits me. I now have time to process all of those feelings and events. It needs processing, and storing it up is not good for you. However, trying to make sense of it all and filing it away in your brain under “sorted” is no easy feat.

I took myself to the GP. Most parents and carers will tell you that generally they never go to the GP unless absolutely necessary.

There are always seemingly more important things to do and though you’d go there in a heartbeat for your own child, you don’t always have the same respect for yourself!

I got in the waiting room. My chest felt tight. My breathing became faster. The lighting started to give me a headache.

I felt like I was going to cry. “Get a grip of yourself” I told myself. I started some breathing exercises and put my music on.

Then a lady and child sat near me. She was teaching her child how to eat strawberries. On any other day this would have been a lovely moment to encounter but today it slapped me with grief. “That child is half my child’s age and I won’t ever get to do that”.

I burst out crying. I removed myself from the waiting room, hot with sadness. The GP asked me “is leaving the house always this much of a trigger for you?” To which I replied “No.”

She started me on a new medicine which I am hoping will soon start to kick in (instead of just knocking me completely sick and fatigued like so many meds do for the first few weeks!)

It’s PTSD. It’s anxiety. It’s so many rubbish things.

Now sometimes I will tell stories like this only for someone to retort “well at least she’s okay now” or “we’ve got it worse, try having 800 seizures a day” etc. Not helpful!! I fully acknowledge that there is always always someone worse off than you.

I count my blessings every single day and I know how amazingly lucky I am to have my wonderful boyfriend and my perfect girl. But that does not detract from the very real feelings I have on a day to day basis.

I recently started volunteering. I have met many other special needs parents with different stories to ours. I have found myself so humbled and in awe of these amazing families. It’s incredible what these children and their families endure and how they’ve come away from it all stronger and more resilient.

It has taught me that you never know someone’s story fully. You can never look at someone and assume they have a better life than you or that they won’t understand your struggles.

I think sometimes the issue is that so much of my communications with people can happen via text or social media.

And sometimes wording can be misconstrued and someone may come across not very understanding or a bit dismissive when actually what you’re saying does resonate, you’re just feeling touchy and reading into things too far.

I have done it this morning a bit and am feeling a bit angry and hurt. It’s not a nice feeling to deal with.

I have always said, people often view special needs parents as either someone to be pitied or someone to be worshipped as a hero. But the truth is, we are parents just like any other… doing what you would do too in our situation.

We aren’t heroes, we’re not victims; we’re just dealing with our cards we’ve been dealt the best way we can. However we feel… is valid. Even if it seems completely irrational.

From one day to the next so many of us don’t’ know what is going to happen and that can be frightening… if I seem awkward because I won’t come to meet you and need you to come to me… try to understand there is a reason for this.

If I seem “flakey” (as I have been called) again, there is a reason… and if you’re a real friend you’ll validate my grief and join me. Then we can move on and laugh about silly things and enjoy life.