I wonder sometimes about how I came to be so lucky; B is a wonderful husband (unsung hero) and of course The Kids are amazing.
I’ve been reflecting on the past ten years and so much has happened; so many times things could have broken down. Before we got married I gave B a free pass with no judgement to leave- living with lupus is tough and a lot of shit comes with it.
Turns out he’s more resilient than I gave him credit for and I’m thankful every day he didn’t take the pass. We’re a unit – sometimes functional, sometimes dysfunctional but always we have each other’s back.
When The Kids were born my instincts kicked in. REALLY kicked in. And I listened.
I was so in tune with M that I knew what he needed when he needed it and I was lucky enough to be able to meet his needs. I had occasional lupus flares but most of the time I managed well on my own while B was at work. I was able to look after myself and M and everything else I needed to do.
When M was 9 months old I got chicken pox. That really did me in. Then, two weeks later, M got chicken pox. I was completely flattened. After that the flares all kind of rolled into one and it took a really long time to recover. If I’m honest I never really got back to my pre-chicken pox self.
After L came along my body started rejecting the medicine that had kept the lupus at bay so the doctors said I had to stop taking it. I was offered immunosuppressants but with two very young children I was scared of the risks so did not start those.
In hindsight that was a mistake. To say things went downhill would be an understatement.
At the time we lived in a townhouse with the bedrooms on the 2nd floor – I spent most of Lily’s 2nd and 3rd years trapped in bed. I was reduced to begging for help from social services and, completely shocking to me, they made me beg more than I thought I could. They withheld support and belittled me and laughed at me and treated me like scum on the bottom of their shoes. I think it hurt more because I had this belief that they were there to help and I trusted the system to help because I was in genuine need.
I have been thoroughly disabused of my view that social services are there to help and feel incredibly foolish for the blind trust I had in the system. I used to believe that they would be honourable and follow the legal guidelines for providing help. As I type this I am shaking my head in disbelief at my foolishness.
I am embarrassed by my naiveté.
Don’t misunderstand me; I understand the budget pressures these departments are under and I completely understand that there are many people who need help but just because we need help does not mean we are not deserving of respect.
I offered a free pass again to B and was thankful he didn’t accept but would have completely understood if he took it and ran without a backwards glance. Most of us end up becoming single parents so the spouses/partners that do stick around deserve gold medals. They don’t get enough credit for the crap they deal with on a daily basis and have very little time or space to de-stress. They are unsung heroes.
Some may say that if we are unable to care for our babies we should not have them. To be honest if I was as bad as this before my babies arrived I would have probably come to the same conclusion but The Kids are here and I am incredibly blessed to have them. They make me strive to be better and do better.
I have wanted to crawl into the dark depths and curl up away from the world and hide from everyone but The Kids kept me present and sane. They forced me to move forward.
Today I am where I am because of the strength of The Kids and B.