Posted in Archive, January 2021

Disabled Parenting: A Learning Curve

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Being a disabled parent is something that three years in I still have not got my head around how to nail. Though does anyone ever nail the toddler years? My children are, at the time of writing, three and 19 months old. Both children are owners of strong, hilarious personalities. Both currently are sound asleep, I know my daughter will wake up in the morning with a rendition of either Baby Shark or Let it go, and my son will wake up just before 6am, delighted that it’s early. I’ll wake up and relocate my knees.

Each day for us is always an unknown to some extent. We try to pace our days by following an activity timetable, which gets switched about at the start of each week. The timetable was introduced not only to help manage with being housebound more due to shielding, but also to encourage subtly paced activities without making it too obvious. The children, know that mummy is disabled and needs to do things differently to daddy, but I do try minimise to some extent how much of that they see.

It is a fine and difficult line to tread. On one hand it is important to me that they understand that everyone is different, some people are disabled and that’s perfectly fine; however my son has a very caring nature, and does worry, so I do try to shield from him some elements that at three he doesn’t need to worry about. For example, right now due to hormones all my joints are loose, this has resulted in multiple subluxes, dislocations, general spasms and fatigue over the day. He’s aware I’m tired today, and slightly sore, but he’s also ‘tickled wrestled’ me, so I know he hasn’t picked up on much.

We made the decision quite a while ago that I would no longer cook with the oven for the family. This was due to a range of issues such as seizure, spasming with a hot pan, or dislocating. My partner does the majority of cooking, and on weeks when he is on late shifts we have carers come in to cook the tea. However I still ‘cook’ I use the phrase very loosely, things using the microwave.Today, was just one of those days that was a dropsy day. Everything I touched seemed to be destined for the floor, which is exactly where the kids porridge ended up after I picked it up to heat it up. My hand spasms were so ridiculous the food had ended up on the floor before I had processed quite what had happened. It reaffirmed to me, that whilst I order the food my place is no longer in the kitchen, and provided the kids with a good few minutes of giggling.

Learning my own hacks to make disabled parenting work for me is something that is a slow learning curve that I am just getting to grips with. For example buying a second seat belt for my wheelchair so I can strap my daughter to me when we go out for a walk. Each day is never the same as we adapt to the needs of my disobedient body and the cheeky duo. The kids never fail to amaze me with how well they cope though. I used to get in a state over the possibility of the fact they had to ‘deal’ with a disabled mum. Whereas now I am so proud of the caring nature the two of them have, along with their inquisitive minds.

Posted in Archive, Novemeber 2020

Family Planning When Chronically Ill

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Damon and I had always said right from the start of our relationship that we envisaged having three children. We both came from fairly large families, with him being the eldest of three, and myself the eldest of four children, so it seemed natural for us to imagine plenty of tiny feet running around creating havoc in the way only kids can. As my conditions were fairly well controlled when we met, the only issue with our forward planning was the fact that I had been told many years before at the age of 19, that I had severe endometriosis; to the point that they suspect I would be unable to conceive naturally and would need medical assistance to do so.

Common symptoms of Endometriosis

We have been fortunate to have been able to have our son Stefan Elijah, now three, and our daughter Evie Maise, now 18 months, without any assistance. Their existence to me feels miraculous. When we fell pregnant with Evie we discussed frequently trying for our third child shortly after her first birthday. It was exciting, and something I was really quiet fixated on. Physically I had managed to get back to a good place after having Stefan, and it seemed wise to do it close together, before my health started to go downhill. My pregnancy with Evie was a rough one however, and I spent multiple periods as an inpatient in my local hospital. We had hoped that after Evie’s arrival that my body would improve again as it had following Stefan. However, this time round it took months to get back in to the Botox system and once again I ended up in the hospital for over a week needed an NJ, constant fluids, unable to swallow, or really communicate. With each day the idea of a third was slipping further away, I refused to talk about it for awhile. It really affected my mental health.

While I have had periods of better health over the last 18 months, it has generally been a downhill, to the point where I’m now essentially blind in one eye, reliant on an electric wheelchair outside of the house, and being assessed for demyelinating diseases on top of everything else I already had going on. My hands are full to say the least. So Damon and I sat down and agreed that it would be unfair to even consider bringing a third child into the family; he was also concerned if my heart could physically take a third pregnancy as it has struggled with the last two. It was an extremely hard conversation to had. Even though we both knew it be the right choice to make, it didn’t make the biological want for another child any less.

Stefan aged 3
Evie 18 months

I often get asked a mix of questions in relation to children. Sometimes people will ask “So when do you think the next one will come along?” It’s a well meaning question, that I always answer with a light hearted “oh my hands are full enough with two”, but it stirs the emotions, the want for another that is so strong since our daughter started to so much more independent. Other times it’s the slightly harsher “How you can even consider having biological children when you know some of your conditions are genetic?” Generally I don’t answer this question in public, mainly because it catches me of my guard. However it is fair. My Ehlers-Danlos Syndrome has around a 50% inheritance rate, its slightly more prevelant in girls than boys. Yet there is every chance that both children have escaped without developing it, there is also a chance that if they do have the condition that it’s not as severe as mine. There is no way to know. It’s also worth bareing in mind that mine is made worse due to other conditions that impact each other. I would say that before you ask anyone about kids really think; if they have a medical condition perhaps stay away from the topic until they bring it up. In can be a sensitive one.