Charlotte and Greer

Charlotte is the mother of twins Greer and Tavish. In this honest piece, Charlotte shares the reality of parenting twins where one has a life-limiting condition.

Charlotte’s frank insights do not sugar coat the reality of parenting a child with a complex medical condition, but they reassure us that sometimes it is truly ok, to not be ok.

Firstly, let me apologise, if you’re here looking for a glimmer of hope or a message of someone who is thriving despite having a medically complex child with a life-limiting condition, this is most probably not going to be that.

 

If I had sat down to write this about a month and a half ago, it would’ve read differently, but in this sea of grief that has become our collective existence I’m currently riding a BIG sad wave, and I’m coming crashing down to be catapulted onto a damp sandy shore, wet, cold, spluttering trying not to choke on salt. You see, my beautiful girl has recently stopped eating – she’s “nil by mouth” – and eating had been such a large source of pleasure in her life.

 

I relished in feeding her. Yes, it was exhausting and time-consuming, and two-plus years on most children would be fully sufficient at self-feeding (I know, her twin brother is the image of health and textbook “normal”) but feeding her was our thing. It was time carved out in the day where I fed her, and she smiled and cooed between bites or squawked at me if I was too slow with the spoon. I miss it.

 

My little girl was born with a slew of issues but the overarching diagnosis is Miller Dieker Syndrome; a diagnosis it took us eight long anxiety-ridden months to get as we watched her twin brother meeting all of their “milestones” (can’t help but roll my eyes as I write that word) as she started to stagnate. We were in and out of the hospital every few weeks, Greer is prone to chest infections, and the underlying cause was surely neurological, but we didn’t have a full picture yet. She was in paediatric intensive care and intubated with a bad case of Rhinovirus (for those not yet fully inducted into the medically complex world – that’s the common cold). This was pre-covid, but our twins were born at 29 weeks gestation, so we’d done a lengthy stint in a neonatal unit and came home armed with gallons of hand sanitiser and an Amazon subscription for hospital-grade disinfectant wipes (the environmentalist in me still grimaces at the thought.)

 

The days leading up to “D Day” (as we now refer to it in our home) felt like a marathon. In the NICU we’d been hyper focussed on our little boy, who almost died from Group B Strep sepsis not once but twice. Our girl had relatively smooth sailing, so when two weeks into life as new parents we were brought into a little room between neonatal and special care, we thought it must’ve definitely been something about our son.

 You know when you’re crying so hard that your throat starts to constrict?

When children are born before a certain gestation, they do routine brain scans to check for bleeds. There was something flagged to them, they said (“they” being the room full of consultants and junior doctors we were now sitting in). This sonographer is very experienced, she knows what she’s talking about, she’s seen this before, we need to send Greer to the children’s hospital for an MRI to confirm the diagnosis. They kept saying this word, “Lissencephaly”, and talking about how her brain had hardly any grooves. Snot and tears streamed down my face, I remember looking out the window to the M8 below and thinking about jumping.

 

You know when you’re crying so hard that your throat starts to constrict? I could barely breathe but somehow sputtered something about how I had taken my folic acid for years before even thinking about trying to conceive and drank a smoothie crammed full of spinach throughout the pregnancy despite terrible bouts of sickness. I remember being told this wasn’t my fault, or my husband’s fault, that there was nothing either of us could’ve done to change it. I spent the remaining two months we had in that unit terrified of, and for, my daughter. Was that a seizure? Would she feed? I did endless hours of skin-to-skin with both of my children but Greer wouldn’t latch properly and so the “bond” just didn’t feel the same as with my son.

 

Then we came home, and we clung to every smile (something they said she’d never do) like it must have been a sign someone somewhere had made a mistake.

 

Every hospital admission the consultants would marvel at how she didn’t “look” like a child with Lissencephaly. Her muscle tone was still (for lack of a better word) “normal” and she was smashing tummy time and rolling all the way over. She would even reach up and put her hands on either side of her bottle while drinking – another thing they said she’d never do – bring her arms to the midline. We had an MRI done that confirmed Lissencephaly and indicated at some point we’d be dealing with epilepsy. The neurologist was “pleasantly surprised” by Greer and sent us home with a telephone number to call if we thought she’d had a seizure.

 

My head was spinning with more questions than answers. I was terrified, I was grieving the daughter I dreamt of having, the motherhood journey I’d imagined, all while dealing with a branch of extended family who were unsupportive. I was recovering from major surgery, and caring for two newborns. Our marriage was under the strain of becoming new parents in stressful circumstances and now the reality of having a sick child, who didn’t seem sick (yet).

 

I was in the hospital with Greer when they started to talk about COVID-19. She had a temperature, so we quickly became a suspected case, and locked in a room alone. A nurse would enter every three hours in a hazmat suit to check Greer’s vitals, leaving behind some milk, telling me how to set up the pump feed. One of them took pity on me and left a portable DVD player and a handful of romcoms. My husband wasn’t allowed to visit but left a bag with clean clothes and essentials at the nurses’ station for me.

 Now I could walk you through every minute since that diagnosis. How any last glimmer of hope we had for our future shattered, shards of glass flying out to puncture every single surface in our immediate vicinity.

Later that same day the country went into lockdown. A few days passed and they confirmed Greer didn’t have the new virus. It was RSV and norovirus. Consultants started coming in, now wearing more PPE than the norm but no longer in hazmat suits. A neurologist came to see us and started talking about Miller Dieker Syndrome.

 

I was alone, with my daughter, my husband was at home with our son. I’d had eight long months to read everything I could find about Lissencephaly, and I had of course read about MDS by this point, and I was determined she could NOT have Miller Dieker. My throat started to constrict, my chest tightened, I felt like I couldn’t breathe. My brain was hot and throbbing like a pile of steaming rubbish. “We’re awaiting genetics results,” I managed to say. He backtracked and started saying the geneticist would explain, but it became clear to me the geneticist was going to phone with the results we really didn’t want.

 

Now I could walk you through every minute since that diagnosis. How any last glimmer of hope we had for our future shattered, shards of glass flying out to puncture every single surface in our immediate vicinity. How we have slowly started picking up the bigger pieces, still down on our knees searching for the tinier ones, trying to reconstruct our life. How Greer’s symptoms have only gotten worse since then, and we’ve had to watch our precious firstborn deteriorate – losing her ability to swallow liquids – now her ability to eat orally – and so on and so forth. Her smiles are becoming less frequent but they’re still there. Somehow despite being trapped in a body with a brain that causes her pain and daily struggles, somehow, she still smiles.

  I’ll find my way back to hope and happiness again, I always do; the same way I know that this won’t be the last wave of sadness I feel.

She loves Fleetwood Mac and Taylor Swift, so much so she falls asleep listening to one or the other every night. We’re learning to accept a home full of medical supplies and equipment. We’re trying to make memories and focus on quality of life, not just for Greer but for all four of us.

I’d be lying though if I said I’d come to some acceptance of my daughter’s fate. It defies the natural order of things, completely, to lose a child, whatever their age. I’ve lived through losing grandparents, and my father, but the thought of having to learn to live without my baby absolutely cripples me.

 

So, no. I’m not thriving. I’m surviving. I’m trying to make sure my family survives; my marriage survives. I said this wouldn’t be a message of hope, and I suppose it’s not. I apologised because if you’re in the throes of early diagnosis and like me, all you want is to hear and see from people who have come out the other side looking healthy and happy; I’ve not done that for you here.

 

I have days, sometimes weeks, where I feel certain we’ll end up OK, but lately I don’t feel like that, I just feel sad. And it’s OK to be sad, it’s OK to let yourself feel that too. But you can’t be sad all of the time; it’s not possible to live like that. Somehow writing this has helped to take a load off. (That’s what I do to feel better – I write – though not usually for an audience.)

I’ll find my way back to hope and happiness again, I always do; the same way I know that this won’t be the last wave of sadness I feel. All of that being said, I am OK, we’re all actually OK, even if sometimes it doesn’t feel like it.

 

Charlotte lives in Glasgow with her twins Greer and Tavish and her husband, you can connect with her via Instagram on her account @charlotte.rushforth It is a private account but please request to be friends with Charlotte if you are on a similar parenting journey or feel you would like to connect.