I never thought I would say that the last time I feed my son, would actually be the hardest. I remember the agony of feeding him in those first few weeks; I had the bleeding nipples and the rock hard boobs that would make me shudder if brushed against clothing. Learning to breastfeed was not easy and yet feeding Kobe for the last time feels so much harder.
I was put on medication called Hydroxychloroquine during my pregnancy with Kobe. It is a medication that aims to suppress my immune system, as it was my immune system that had attacked Holly’s heart. Outside of attacking an unborn baby, these antibodies primarily attack my secretory glands but can actually attack any organ in my body. For the entire 36+5 weeks of my pregnancy with Kobe, I wasn’t poorly once. This medication was working for me and it was the first time in many, many years that I actually felt well.
I hadn’t planned on breastfeeding Kobe because of the difficulty I’d had trying to feed Eleni. I was worried about what impact it would have on my mental wellbeing but as soon as he had been born was brought to me on that operating table; I knew that I had to try. The only problem was I couldn’t continue to take the medication whilst feeding as there were risks of it causing visual defects for Kobe.
However, I wanted more than anything to put my baby first and so I did. I never had the chance to breastfeed Holly, so when Kobe was born I felt so desperate to give him everything that I could. We got through those first few weeks of breastfeeding and before I knew it, we were just breastfeeding and it felt amazing. It was our little relationship and I would cherish every moment of it. My confidence grew as we fed in public and I became so proud of the both of us.
As the weeks went on, my Sjogren’s was started starting to lift its nasty head again. Muscle aches, kidney stones, swollen parotid glands, eye pain, nose bleeds, ulcers and stomach pain to name a few. I spent weekends just lying in bed, willing for all this pain to just go away and wishing for this Sjogrens to stop taking over my life.
Kobe was starting to feed less from me, only really once a night but yet I still didn’t want to give up feeding him. I didn’t want to have my Sjogren’s take away yet another thing from me. It felt bad enough that it had stolen Holly; did it really have to keep stealing moments from me now too?
A few days ago I ended up in hospital yet again. Diagnosis being Pleurisy, with a common cause being autoimmune diseases i.e. my Sjogren's. I’ve hardly seen my children in the last few days as I’ve been in bed recovering and it wasn’t until a friend said this, that I realised what needed to be done:
“Kobe and Eleni need a healthy mummy.”
Shit I thought. It is time to get back on those tablets isn’t it?
I wasn’t ready to stop feeding Kobe because I know that I can never have another baby and I will never get to breastfeed again. I don’t know if that makes me sound selfish but I was trying so very hard to not be selfish by stopping my own medication to give Kobe the best milk possible. But somewhere along the way, I think I started needing to do it more than him. I’d an entire future with Holly ripped away from me that I just didn’t want this to end with Kobe. There is something about having a rainbow baby that makes you want to stop time from moving on, to cherish every moment and just be a mummy.
Sometimes, I just can’t stop being mad about the power that Sjogren’s has over me but I know that I have given him my best and now I need to be my best. Sjogren’s has stolen a hell of a lot from me but I will try my best to not let it steal any more of my future.
13 months feeding my little Kobes but a lifetime of memories. I have to just keep telling myself that I am lucky I had this chance at all.