Eilidh Grace

Mummies always know best, don’t we? Or do we...

I knew that something wasn’t quite right with Eilidh, but was that the doctor in me talking? I tried just to be her mummy. I tried really hard, but there she was, the doctor, lurking on my shoulder, questioning my judgement, wondering what could be wrong with my gorgeous little girl. I so wish that the doctor had been wrong, but she wasn’t.

Eilidh came into the world on Monday 26th January. Determined to make an entrance she was born by c-section, too stubborn to turn round from breech despite my attempts and days spent on all fours or bouncing on my gym ball. She even resisted the ECV...stubborn and determined: I really thought that she was going to be a bouncing baby boy! Alexander James Laidlaw Macfarlane...

She didn’t cry when she came into this beautiful world, her umbilical cord wrapped tightly around her tummy. I was reassured that everything was ok but the minutes waiting to hear her cry were infinite. An emergency call went out and they were slow to arrive, but I had faith in the team that were present in the theatre. I also had faith in my daughter. I knew that she would be ok, I knew that she would breathe and cry – in her own time... From the moment that I knew she was a possibility eight months previously, I had put my trust in God. And I trusted Him at her delivery and He was present.

So our little girl was handed to us, beautiful and so different from her older sister – chubby and cherubic – and we held her close and cried. We were already so very much in love with her. A true blessing....

Even in the first few days our little baby wanted to make sure that we were certain of her individuality – she wouldn’t latch on to the boob and fussed around but all in all she was content. We bonded and cuddled and waited for daddy and her big sister to arrive. As we gave Niamh the baby doll which was a present from her little sister, she saw the cot and gazed in “baby, cuddle!” and I think that that was the moment that Niamh fell in love with her little sister...

Three days into her life, our little baby was finally named. Eilidh Grace – she so suited her name. Eilidh is Gaelic for light. Grace is derived from the Latin 'gratia', meaning God's favour. A beautiful name for our beautiful girl.

The months flew passed... the sleepless nights were enjoyable as I was able to hold my daughter in the darkness, in peace and quiet, and cherish her... extra time stolen from busy days when Niamh wanted cuddles too . The first smile and giggle were as special as they could be. Eilidh sitting and commando crawling... all normal for a perfect little baby. I remember the day that she started to commando crawl so clearly; we moved house that day and there she was in our new dining room looking out into the garden and she crawled forward towards me. I remember thinking “it won’t be long until she’s up the stairs with her sister and outside causing havoc”... how wrong I was.

Eilidh continued to roll about the rooms but there was to be no more crawling. Eventually even the rolling stopped. I spoke to a friend and we gave her the benefit of the doubt, but I began to worry. My GP said to give her a few months longer and the health visitor agreed but I was getting more and more concerned. Eilidh wasn’t moving and she now hated being on her tummy. She was unstable as she sat playing with toys.

We saw a neurologist, Dr Neuron, in February – a lovely doctor who I had previously worked with – we laughed and joked and he too wanted to give her the benefit of the doubt: that her weakness probably was due to the fact that she was frank breech. He referred us to neurophysiotherapy and in turn to community physiotherapy and each day we hoped for some improvement.

Three months later, a week before we were due to see Dr N again I began to notice that Eilidh's upper body tone and strength were now poor. I tried not to think about it, having spent 3 months trying to convince myself that it was because she was breech and that everything would be ok. I wanted to blank out any possibility other than that Eilidh was just perfect. I kept this discovery to myself – I didn’t want to mention it, I didn’t want to worry anyone, I didn’t want to tempt fate...

And then the day of the appointment came and I felt so uneasy – I think that I knew that we were about to face the harsh reality that there was something very real wrong with Eilidh.

Dr N was gentle with her as he examined Eilidh again. A registrar was also present and experienced as he was he failed to hide his worry as he noted her lack of tone and poor musculature around her trunk. And then Dr Neuron said it “I don’t think that this is because she is breech. She may have a neuropathy or a myopathy but she doesn’t look like a normal myopathy. I’ve been thinking about spinal musculature atrophy. I’ve been thinking about Eilidh a lot since the last time I saw her. I wanted to give her the benefit of the doubt, but I think that it’s time to investigate further.”

I crumpled at this point. I knew this was serious, that something devastating was wrong with my baby and I couldn’t hide it anymore, I couldn’t hide from it anymore either. I buckled, I cried and sobbed. I think that everyone was shocked at my level of despair, but deep in my heart I knew that this wasn’t going to be good news, that our lives were about to change beyond our comprehension.

D took Eilidh away to have bloods drawn and as I sat listening to her cry, I talked to the Muscular Dystrophy Campaign Care Advisor or fairy godmummy. I knew her, I had worked with her and dined with her and now here I was talking to her about her husband’s recent death, my post-natal depression and anxiety and this overwhelming knowledge that something was definitely wrong with Eilidh. I had been unable to place her at first, having worked with her in Palliative Medicine she was so out of context: I knew that she had changed jobs but I couldn’t remember what she was doing and I just accepted her presence. Now, on reflection, I am so pleased that she was there with us that day and that she is still part of the team looking after us.

D and I managed to get home, we managed to talk to his mum and dad, we were able to put the girls to bed and then we fell apart. I cried. I sobbed. I didn’t know what to say or do. I didn’t know what was wrong with Eilidh and I couldn’t cope with not knowing. In bed, in the darkness, without being able to see the other’s face, we were able to be open and admit how terrified we were. Our little girl. Our gorgeous daughter. But all we could do was wait.

D had no understanding of any of the conditions Dr N had talked of and he didn’t really want to know. I knew about each and every one of them but wanted to erase that knowledge and be blissfully unaware until we had the final diagnosis. But no, I sat and worried and projected a future that was uncertain and full of pain. I thought of worse case scenarios and best case scenarios...

Muscular dystrophy was ruled out on day 2 – her creatinine kinase was normal – diagnosis one ruled out. And I thought that that was the worst that could happen – how laudable!

The days were difficult but the nights were worse as I tended to ruminate. I wanted to die. For the first time in my life I truly wanted to die because inside of my body was a huge gaping dark hole where my heart was once beating. I felt so empty. Difficult as it was I shared my feelings with D and he fell apart and, seeing his pain I wished that we could all die together so that we would all be spared. I was without hope. I was totally devoid of hope.

So we waited for the genetic test to come back. Wednesday came and went without hearing from Dr Neuron. He phoned on Thursday to apologise for the delay but the lab had promised that the results would be available by the end of the day. Dr N asked us to come in for the results.

The waiting for over. We walked in to the relative’s room and D, just as he entered the room, gave the warning shot “This is bad news: we’re being shown into a room with a comfy sofa and a box of tissues”. He was right. No sooner had we sat down when a rather apprehensive looking Dr Neuron spoke – and I knew from just looking at him and the MDC fairy godmother that this was bad news:

“We got the results at 4.27. It’s SMA 2.”

And I broke down. I didn’t need to know any more. I didn’t need to listen to any more. My life was over. Eilidh’s life as I saw it then was over. D didn’t understand. He didn’t understand what had just been said and he asked more questions of Dr N until he too realised the extent of this horrific diagnosis. I think that his moment of realisation was when the neurologist said “She will be wheel-chair dependent”. And then the despair hit him as the final punch hit home “She’ll probably need a powered chair”. For me, in that moment, Eilidh lost her final piece of independence and I wanted to run from the room.

I can’t remember what was said after that – it’s true that when bad news is broken you don’t retain much of the conversation. I remember thanking Dr N and getting a hug from him and the fairy godmummy – why did I thank him for this earth shattering news? I don’t know; I really don’t know.  And then we fled the scene...

So on that day, Thursday the 27th May 2010 we received a diagnosis that changed our lives. On that day we started on our journey with SMA. I was without hope. I was lost. I imagine that D felt exactly the same way, too. Eilidh was blissfully unaware and with innocence on her side, she kept us going. She was the reason to get up in the morning. Her smiles made my days. Her joy and exuberance flowed through the house and for that, at least, I was  grateful. 

She was and still is Eilidh.  No more.  No less.  I love her no less just because she has SMA.  I will do anything for her.  She keeps me going.  I get up each morning and I ache to see that first smile of the morning for it takes away my pain - or at least some of it.