A siblings journey- Embracing the Chaos of Two

I don’t know what kind of mischief had come over us, with all the drama we were going through with S’s hearing and meltdowns. It had taken us two years trying to conceive the first time,  but something in me was telling me to go for it. I wonder now, was it a desperate need to take back control of our lives? Was it fate? Or insanity? The chances were so slim, or so we thought. Within a few weeks all those tell-tale signs were there. On a wet Sunday afternoon in January 2000, I sat there staring at three blue lines from three tests. Shock, excitement, disbelief. What had we done??!! S was only 16 months old. Gulp.

But I was filled with something unfamiliar that I hadn’t felt in such a long time. Joy. Hope. Happiness. Yes, it was terrifying, but it was also wonderful. A new baby. People were going to think we were crazy. We had so much going on, and we were still struggling to come to terms with S’s hearing loss. But as we broke the news to family and friends, they were also joyous for us. They didn’t seem to think we were insane, or at least they didn’t show it if they did.

The professionals dealing with us weren’t so delighted. We were met with stony faces and grim news. We were informed that with us having one Deaf child, there was a 1 in 5 chance that this child would also be Deaf. For some reason, that didn’t worry me. That was a 4 in 5 chance that they wouldn’t be. We had been to see the Cochlear Implant team and were told my being pregnant might make us less appropriate candidates for S being chosen for the implant, as I would be too busy with a new baby to give her the required time and attention she would need. I assured them this wouldn’t be the case. I could see there was going to be more fighting ahead of us.

The pregnancy marched on. During this time, we fought to get S her cochlear implant and went through the operation (see blog -Silent struggles ). The due date was close and coincided with S’s switch-on date. At this point, I just wanted to get on with it. I felt like a beached whale – second pregnancies aren’t as fun as first pregnancies, especially when you have a toddler to run after. At my antenatal appointment they had agreed surprisingly to induce me to fit in with S’s switch on date  S was dropped off with my parents and we headed off to the hospital.  When we got there the midwife told us that it was busy night and suggested we go out for something to eat and return in a few hours. It was unreal for us to be out on our own after everything that was going on, knowing that in a few hours we would have another baby, just sitting having a meal in a restaurant, casual as you like, strangest date night ever. After a long night and day G came noisily into the world.  The midwife said she had never seen anything like it  before. She wasnt crying, she was talking, she was gargling, wriggling her head   as she left the birth canal.  It was a strange sensation.   

G was a pure joy, a real bright spark in what had been a dark time. Before I was allowed home, she had to get the echo test to see if there were any concerns about her hearing. But I had already noticed the difference. I could see her turning to voices or jumping and starting at sounds. I hadn’t known the first time round, I’d had no comparison. They wired her up and put electrodes around her head as she slept, and they piped sound into her ears to test the echo that is sent back. I held my breath. The words the technician told me next were like music to my ears: “Everything seems normal.” As I came out of the room, my mum was waiting at the other end of the corridor with S. She could tell by the look on my face what had just happened, as I grinned widely and nodded  “She is OK.” Her eyes filled with tears. What a relief.

S was not impressed with her new sister at all. In fact, she wasn’t impressed with me. She was so clingy with my mum, and it wrenched at my heart. The few days she had spent away from me had already created such a disconnect. I was emotional as it was, having just given birth, but this was brutal. She didn’t want to hug me, she didn’t want to see the baby, even though the baby had brought her gifts, and I’d been careful not to be holding the baby when she arrived to visit, I’d read all about how upsetting it could be . I’d done all the right things, but it didn’t matter. It felt like she didn’t love me anymore. I was desperate to just get home.

So home we came, all four of us for the first time. Many friends and family came to visit and meet the baby. S was fine when we had visitors – she would go off and play with all the other children that came and went, but every time someone would leave, she tried to give them her sister to take with them. She didn’t seem to understand that this baby was ours. She didn’t like this new creature in our home at all. She wouldn’t sit near her for a photo and would have huge meltdowns every time I fed her. I lived in hope that this would pass. I could hold the baby to feed her and opted to have her in front of me in her baby chair   I got really good at feeding her while also chasing S round and playing at the same time, no wonder she was so colicky.

We had to get used to having a new baby as well as managing S’s many meltdowns and prepare for the switch-on. I told myself that everything would be different once she could hear us. My mum and dad came over to watch G the day of the switch-on. Normally, it would have taken me many few weeks to even consider leaving my baby, and even though I knew my mum would take good care of her, it felt wrong. She was so tiny, but we had no choice. The switch-on was too important and needed our full attention.

Meanwhile, we were still trying to adjust to being four. G was a great wee baby, but it’s hard – the lack of sleep, the night-time feeding, and the colic. I was stressed out of my mind. I remember at night, in the dark, winding her with such vigour that sparks were coming off her little handmade knitted cardigan. I was hanging by a thread. It was all too much. But little did we know, things were about to get worse. G came down with a bad cold. She was so tiny, and her coughing and wheezing were worse than anything we had seen before. I took her to the doctor and was sent to the hospital. She was kept in; S was dropped off at my parents’. We sat all day with G as they monitored her oxygen levels. It was the first time I had felt I could catch my breath. We had a nice day that day, sitting waiting, not really thinking this was a big deal. They mentioned her staying in overnight, and my initial response was relief – we might get a night’s sleep. But when they explained what was really going on, that thought soon disappeared. G had a virus called RSV. I had heard of it before, as a friend’s child had had it the year before, and it had been brutal. This wasn’t going to be a walk in the park – I wasn’t going to be getting a night’s sleep any time soon.

They took us up to a ward right on the top floor. There was a box in yellow tape on the floor around each bed. This was our quarantine area. In our square was a cot/bed and a chair. We were not to leave our square without fully disinfecting and removing all protective clothing; we had to wear the protective wear at all times. G had an oxygen tube put into her nose, and she was also fed by tube as she couldn’t swallow and breathe due to the virus. They couldn’t tell us how long we would be there. But we could see she was getting sicker as time went on.

In the evening, it became clear that only one of us could stay. Each child had one parent. They all sat beside the beds in their yellow squared boxes. A few babies had no parent – they would cry and cry, the nurses were too busy to attend to them. When we attempted to go to them, we were told this was not allowed as we might contaminate each other with a different strain of the RSV virus. It was heart-breaking. I was overwhelmed with guilt that I had momentarily thought I might get home for a sleep. How could I have ever considered leaving my baby in this way, alone, sick, and crying in an unfamiliar place? There was no way I was going anywhere.

Steven went home that night and got S and brought her home. I stayed and tried to sleep in the hospital chair; it wasn’t even a nice soft reclinable chair, just a regular one. I think it was the most uncomfortable night of my life, worse than those nights in hospital with S after her operation—that seemed like luxury in comparison. I found myself very emotional and tearful. The nurses regularly did their rounds and had to check G’s temperature, which would unsettle her. She’d wake up and start crying again, often just after I had settled her. I could feel the tears as the nurse looked at me as if I was overreacting. I felt full of shame and muttered that there had been a lot going on, and things were just a bit much right now. I couldn’t quite believe this was all happening—how much more could we take? I felt so sorry for myself, thinking of Steven in our cosy bed, fast asleep.

But when Steven returned the next day looking like hell, he told me S had not settled all night. Every time he went in to get her, she would meltdown, probably because she was looking for me and didn’t understand what was going on. He had dropped her off at my parents and headed to the hospital for another day of us standing and sitting in our little yellow square. G was slightly improved, but her oxygen levels were still too low for us to go home. We opted to swap for the next night. Steven felt he could fashion the chair into something relatively comfortable. I was very sceptical but wasn’t going to argue, so I headed home to face the meltdowns, unsure which of us had the worse deal. It felt like I was on autopilot, one foot in front of the other, though I’ve no idea how. Thankfully, S settled well that night. She was either so shattered or relieved to have me back home, but for the first time in months, I slept through the night—it was bliss. I felt so guilty for poor Steven in that horrible hospital chair.

It turned out he had managed to get some sleep too, and G was fit to come home. She could breathe on her own now, and we could finally see her little face without all the tubes. We couldn’t get away from that yellow box quickly enough. I remember the relief driving home—we were utterly done in. It felt like we had just been through a war, and I don’t think we could have taken one more thing.

A few days later, the health visitor came for her routine visit. She weighed G, did the usual checks, and gave me a questionnaire for new mums. It had some odd questions: ‘Have you ever felt you might hurt yourself?’ ‘Did you ever feel like running away?’ I answered them all honestly. When I finished, she looked taken aback and told me that I had scored very highly and should see the doctor that same afternoon. At the doctor’s surgery, he asked me why I was there. All I could say was that I had scored highly on the health visitor’s test, but as he asked how I was, the floodgates opened. I became a sobbing, snotty mess. He handed me tissues and told me I was at high risk of depression because of everything we’d been through with S  and having two children so close together. It helped to know that. I didn’t feel like such a failure if others in the same situation were struggling too. He prescribed me antidepressants and sent me on my way. It wasn’t easy to accept that I needed them, but Steven, Pamela, and my mum kept telling me I wasn’t myself and that they would help.

I was confused. So, I was high risk for this? Was I the problem? But these things we were dealing with were real—the constant meltdowns were real. The girls were hard work. Was it them, or was it me?

I took the medication and instantly felt relief. I mean, instantly. Even just filling the prescription and having the tablets in my hand felt better—was this a placebo? That day, outside the chemist, I met an old neighbour who asked about the girls, as people do. I smiled and chatted as if everything was fine, but out of the corner of my eye, I spotted my GP walking past. I felt like such a fraud—I’d been sobbing the day before, and here I was, looking like I didn’t have a care in the world. This was even more confusing.

Within days, Steven was returning from work to a happy home—no more kids in meltdown, I was no longer a crying wreck, the dinner was made, and the house was tidy. I was a different person. In fact, I felt so much better I started to wonder if I even needed the tablets. Everything was good. Every day before had been like marching through treacle, going through the motions, but feeling like ‘what’s the point? Tomorrow will be just as bad, and I can’t see any way forward’. But now, it was so nice to feel like myself again. I could breath; for a second, I wasn’t drowning.

My mum was over, helping me with the kids as she often did. We were in the kitchen, G asleep in the living room in her chair. Mum was giving S a Tunnock’s Tea Cake, her eyes dancing at the look of chocolaty mallow deliciousness. My mum gestured to her to put her implant on if she wanted the treat—bribery and corruption all the way. S let my mum place the implant on her head, and Mum, teasing even more, said to her, “Say ‘Ta’,” ever hopeful that this might be the time she’d speak one of the words we were desperate to hear. S looked at her… but nothing. Her eyes didn’t move from the Tea Cake, held just out of her reach. Mum tried again, “Say ‘Taaa’?”

From out of the room, we suddenly heard a very clear little voice say, “Taaa.” Mum and I looked at each other in confusion and disbelief. Who on earth could have said that? S was given the Tea Cake as we went into the living room, and there was G, all of four/five months old, wide awake in her seat, grinning wildly. Surely not! G had been hearing everything we were teaching her sister. She had been present at every speech therapy session. Her words and comprehension came on in leaps and bounds. I had no frame of reference, of course, with her sister not speaking yet, but I had never seen a child so young with such speech.

Time passed, and the girls grew. G began speaking very early, and her understanding and communication were incredible. The more she spoke, the more her sister copied her. I’m convinced that G’s speech developed so well because of all the speech therapy she was exposed to from birth. Every sound we practised with S, we repeated to the dog and to little baby G in her car seat, just to get S to do it again and again. All the “cow says moo” and “sheep says baa” over and over. It was amazing to see how, unknowingly, we’d been building those pathways in G’s brain. My mum often said she felt G was here to teach her sister how to speak.

But as G got older, S didn’t like this new child in her world. She avoided being near her, and they were constantly arguing and fighting. The double buggy was a disaster. G’s legs kept finding their way over to her sister’s side, which put S in meltdown mode—shaking her head furiously and shoving the offending legs away. The same thing happened in shopping trolleys, making food shopping tricky. S would shove her sister out of the way, and G started biting back, leaving teeth marks on her big sister. Looking back, I can’t blame her—it was pure survival. S wouldn’t share anything with her sister, so we ended up with two of everything. We had big toy baskets with a photo on each one to keep their toys separate and avoid the inevitable squabbles. G was so keen to play with her sister, but S wasn’t having it.

The words “No,” “naughty,” and “baba” soon became S’s firm favourites. It didn’t take long for her to start putting them together: “No, naughty baba” or “bad baba” became common phrases as she turned as far away as she could from her sister, shaking her head furiously and waving her finger. This usually happened when snatching something she didn’t want to share. G, such a sweet little thing, hardly ever complained. It was constantly hard work. How do you discipline a child who doesn’t have vocabulary? S was often in full meltdown, and it got to the point where we hardly went anywhere because it usually ended in tears—mine included.

At this point, I felt totally isolated. I remember watching parents collect their children from the school across the road. They were all talking and happy, and I would see them in the morning and again at the end of the day. I felt such resentment towards them—they had lives, they were out in the world, coping, while it felt like I was standing still.

S had taken an extremely long time to crawl, sit, and walk. Her motor skills were hugely delayed. She could walk now, but after a short distance, she’d refuse and go into meltdown. It’s extremely difficult to manage with a toddler in a buggy and another child lying on the ground in full meltdown, refusing to move. We got a buggy board in the hope that we could move to just one single buggy—these had just been introduced and seemed like the answer to our prayers. Little G in the seat, and S on the board. But S soon got tired of standing and would launch herself off it in protest. G was toddling by this time, and as soon as she came out of the buggy, her sister was in it like a shot. Thankfully, G was happy to stand on the buggy board, even though it was meant to be the other way around. I received many strange looks with this tiny tot on the board and the older child in the buggy. S was never as happy as when she got into that seat. I was so grateful that G was so easy and always did what I asked without any complaints   

At this time, I had no idea that one day I would learn to see this very differently. That it would break my heart to realise that she had learned this as a coping skill, as a way to survive in our chaotic family. But I hadn’t known.  I was doing the absolute best that I could at the time.