Hopes and dreams for the future

When we had Alfie everything kind of got flipped on its head.  Our world sort of got knocked off kilter and we weren’t sure what direction we were headed in.  In my head I had a plan of how I wanted my life to pan out and having a child with a rare medical condition hadn’t featured in that plan.

I remember having a particularly tearful conversation with my mum fairly early after Alfie was born.  I was in that irrational, new mum, hormonal and also going through some post natal depression state.  I remember saying that my plans for having more children after Alfie had gone out the window.  I couldn’t see a way past ichthyosis and looking after Alfie.  I couldn’t see how we would get back to having a ‘normal’ (shudder at the word) life.  I couldn’t see how we would ever be able to do things that other families do, I couldn’t contemplate having more children and I didn’t know how we would manage.  My counsellor called it ‘catastrophic thinking’.

Thankfully I came out of that, a little medication, lots of talking and some therapy helped me to see that I was in a very negative spiral and was thinking about things way too much and putting too much pressure on myself.  Once things had settled down, I was starting to feel better and we had got in a routine we started to feel a bit more like actually this was going to be ok and we had to come up with a new, improved life plan.

We always wanted two children but after having Alfie and dealing with ichthyosis, post-natal depression and also a fairly nasty flare up of crohns disease for me, we weren’t sure that we would have any more children.  For a while we settled on the fact that we would only have Alfie but then as time ticked by it felt like we weren’t quite complete as a family.  Making the decision to have another child was not easy.  I had been fairly poorly after having Alfie, a combination of mental and physical health issues was not something I wanted to repeat again and was a negative mark against having another child.  Then there was ichthyosis to factor in.  How would we cope with doing all of our daily ‘skin’ stuff as well as dealing with a new baby and possible health problems for me too?  We didn’t know the reason behind the mutation on Alfies K10 gene; could it have been something to do with medication I had to take for crohns disease, was it an environmental factor; there is no way of us knowing how it happened so there was a possibility of it happening again.

When I fell pregnant with Rene we obviously had to describe ichthyosis to a whole load of new medical professionals.  It was on all of my hospital notes and we had to see a consultant at the hospital (who had never heard of ichthyosis obviously).   I was told that the baby could have genetic testing to determine whether it had ichthyosis too but that they would only test me if a positive outcome would mean that we would not go ahead with the pregnancy.  This was a no brainer for us; we did not have the test done. 

Alfie had a dermatology appointment whilst I was pregnant and our regular consultant was away and the person we saw was very concerned that the team at Birmingham should have a plan in place in case the baby was also born with ichthyosis.  My thinking was that we didn’t need a plan because in the, highly unlikely, event of the baby being born with ichthyosis a) we would know what it was straight away and b) we would know how to care for a baby with ichthyosis and had all the medical supplies we needed at home.  Luckily the nursing team agreed with me! Having another baby with ichthyosis would not have bothered us; if we were greasing one child up we could do two.  But no idea where we would have put another cupboard full of creams!

Rene was born on 15^th January 2016, 2 weeks over due and 23 hours after being induced, she had to be evicted from her cosy nest by emergency c-section.  Lee was able to come in with me to theatre and as soon as they whipped her out, I was asking how her skin was because needed to know if she had ichthyosis before anyone rubbed her down.  I think the midwives were a bit puzzled as to why I was asking such a bizarre question but I had to know!  I had to stay in the hospital for a bit after Rene was born and so many of the midwives who came to see me had heard about Alfie from the team that looked after us when he was born.  I think he is famous at Burton Hospital!

Having been through a tough time as a family, we are now much more positive about the future than we were 4 years ago.  Ichthyosis is a part of our lives now; it has brought some dark times, a lot of pain, tears and heartache.  But it has brought us closer as a family, it has given us lots of positive new experiences, it has changed our outlook on life and it has connected us with new friends from all over the world. 

We can never know what the future holds but I for one have learnt not to worry about it so much. Life dishes out some pretty shitty cards sometimes, but as in poker we put on our poker faces and go all in; sometimes you lose but sometimes you win.  We will just deal with stuff as it comes; as a family.