When my 15-month-old son Louis became ill, I thought it was just an illness.
I had no idea that it would cost him his life – or that it would soon take my daughter too.
For several days we thought he had some kind of virus. When he showed no signs of recovery, we took him to the emergency room as we started to worry. He drank little and had no energy.
Finally the doctor told us that he was very ill and Louis was put on an IV.
We were told that he had septic shock, a life-threatening condition in which blood pressure drops to a dangerously low level. This happens after an infection and leads to organ failure because they don’t get enough blood.
Louis died on April 30, 2006.
It turned out that he had an infection in his blood. We didn’t find out until his autopsy that he had group A streptococcal septicemia.
Before we lost Louis, we talked a lot about moving abroad. Shortly after his death, we decided to sell our house and move to Spain, trying to make a difference for our other two children after such a hard time.
Looking back, it was our escape – we must have been running. We were in shock for a long time after the loss of our son.
Having Jake, who was then four years old, and Libby, who was then two and a half, was God’s gift, because it meant that I had to continue – give up and fall apart – not an option for mom.
But in October 2008, just two and a half years after Louie’s death, Libby contracted a disease-causing bug. We were in Spain at the time, trying to make the most of our new life.
We were very worried and took her straight to the doctor. They told us to keep an eye on her as she was very depressed, but they thought she was fine.
We told the doctors how Louis died – they assured us that she was not as sick as he was. But they were wrong.
We took her home where she seemed to perk up a bit, but like Louie, she had no energy and was just out of her mind.
I felt that she was not getting better, so we took her to the hospital. All I could think about was losing Louis and how we don’t want to go through the same pain again as a family.
It happened so fast. She was in the doctor’s room and we were made to wait outside. Then they came out and told us that she didn’t make it. It seemed unreal – how could it happen again?
She had the same disease as Louie – streptococcal septicemia A.
Only years later, when we went to an immunologist, did we find out why Louis and Libby died.
We got back to Manchester in the UK and I wanted to do a full health check on Jake to see if he might be in danger.
While they didn’t know the exact genetic disorder that caused Louie and Libby’s death, they told us that if we had more children, there was a chance it could happen again.
Luckily, experts felt that since Jake was almost a teenager, he was out of the danger zone, as younger children are at greater risk.
I buried a lot of grief, as it was too painful to think about our losses. I focused all my energy on us as a family. I started working in my husband’s business because I needed a job with the flexibility to be with Jake if he got sick.
I spent so much of Jake’s childhood in constant worry, constantly worrying about losing him.
I was as busy as I could to distract myself – I also dealt with the sadness of our decision not to have any more children, in case they too were affected by the gene.
Even when we had three children, my husband Paddy and I always talked about wanting more and even talked about adoption. Now, knowing the risk of disease for any biological children, it was perfectly reasonable to follow this last path.
We adopted our daughter, who was then 19 months old. It was amazing that another ball of energy joined our family.
We missed juggling and chaos when the house was full of kids. Jake was great with our daughter, he was so excited and he felt so good with her. She gave hope to our family again.
A couple of years later, we went through the adoption process again to adopt another child who was then eight months old.
Now they are 12 and 6 years old – both full of energy, love to walk and run, very confident and happy girls. All three siblings are very close and get along very well – well, most of the time!
The girls know all about Libby and Louie – we talk about them all the time and we have pictures of them at home. My middle daughter talks about them and tells people that they are her brothers and sisters.
But despite the happy life I’ve been able to build, the feeling of loss never leaves you, which is why I’m so glad I discovered grief coaching.
I came across BREATHE coaching, a technique for helping people regain control of their lives after a loss.
It’s a mixture of breathing and relaxation techniques, and a look at how to deal with grief – it covers a wide variety of things, such as your mindset and goals, personal strengths and weaknesses, and the support network around you.
It helped me and now I feel like I can help others by offering coaching programs for women to help them cope with the loss.
I feel like I have found my purpose – this is what I should be doing, using my history and my own life experience to help as many people as possible.
As a family, we try to focus on having as much fun as possible and maintaining an open relationship with the kids so they can talk to us about anything.
We know better than anyone that we’re here for a little while, but for good, and that Libby and Louie will always be in our memory.
As Haddy Folivi said
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