Bringing up children with a loving husband was always a dream when I was younger.
Being 1 of 5 children, I dreamt of having a large family, a loving husband and all the love that comes from being a family.
In 1999 I met Paul when we both both started working at University of Portsmouth Student Union. A work friendship soon turned to something more and in early 2000 we became a couple. I really had met my soul mate. The one person who I could truly be me with, someone who accepted me for all my flaws and who I could enjoy life with.
In 2004 we were married. I finally had shown all those that mattered just how much he meant to me and I was going to spend the rest of my life with him.
In 2006 my dream of having a family came true when I gave birth to Adam, albeit 8 weeks earlier than I was supposed to. My world was complete – well almost, the arrival of Lewis in 2008 5 wks early sealed my dream. I had 2 beautiful boys and a wonderful loving, caring husband. I had no idea that from that point on our lives would be rocked in spectacular fashion. Lewis falling ill in late 2008 was a massive shock to us both and we had to really work together for the sake of both our boys. Throughout all that happened I stayed with in hospital and Paul looked after Adam at home. Neither one of us had ever thought that we’d have to split our parental needs in such a way. Being separated from Adam was wrecking me and Paul was finding it hard being away from Lewis but we had no choice.
For 8 years this is how are parenting lives have worked. It’s been difficult but we’ve had to make it work for the sake of the boys. Lewis’ care/medical needs are so high and take priority over the majority of our daily lives yet we always try and make the best of any day and although at times we scrape through the day with nothing actually being done, the boys are happy and very much loved.
Since January the balance of our parenting has seriously shifted so that it is very much one sided and unfair.
From the moment I fell ill, Paul has had to step up and take control of the parenting of both boys along with working, managing the day to running of the house and at times worrying about what was happening with me.
I can hear so many people jm saying ‘well we do that all the time.’ But this is our life. We work as a team not individuals!
Having to sit and watch as Paul cares for Lewis, plays with him & give meds etc, is so soul destroying.
I hate not being able to do Lewis’ care but what I hate most is that my inability to care for Lewis is having a serious affect on Paul.
He will never say he’s struggling, says he is OK – but I know deep down that he is emotionally finding it hard. I know my health concerns cause him so many worries. What if I’m I’ll and so is Lewis? What if he needs to be at work and we are poorly. What if either one of us needs hospitalisation? He has the weight of our world on his shoulders and I have no idea how to help him.
I don’t like how our lives have changed. I hate Transverse Myelitis
Transverse Myelitis & Me, With A New Addition! 