I have an illness called Hyperemesis Gravidarum. What that means is that when I am pregnant, I throw up all the time. HG is to morning sickness what chicken pox is to a nettle sting. There is no explaining it if you’ve not had it, or been close to someone who has.
In a time that’s meant to be exciting, full of hope and happiness, my only joy comes from making it to the toilet on time. If I can drag myself out of bed. With my daughter I was hospitalised at 11 weeks for severe dehydration. This time, I’ve chosen something I am really uncomfortable with to keep me out of hospital: drugs. Drugs that have had no clinical trials for pregnancy. But I have no alternative.
Living with a condition that makes a good day be one where you were able to get from your bed to your sofa when you have a toddler tearing around is incredibly difficult, and it has led me to wonder how parents with debilitating, chronic, and terminal illnesses manage to still be parents, despite their conditions.
While Hyperemesis Gravidarum isn’t normally a terminal illness, I know that my recovery last time took almost as long as the illness had, and I felt, at the time, as though I was recovering from something terminal. It was a long and slow road. I don’t have that luxury this time.
I’ve done some Googling, and while there are reams of pages with advice on how to cope with a debilitating, chronic or terminal illness in a relative or friend, or how children cope with it in their parents or countless permutations on that, I find little that tells you as the parent how to have the least impact on your family, or how to support them.
In our home, my husband has taken over the role of cook, cleaner, laundry maid, scullery maid, and single parent on top of his full time work commitments. My daughter pulls at my arm and says “Mommy get up pleath”, not understanding that I’m physically unable.
I’ve been trying to come up with ideas of how I can still be a meaningful spouse and parent even during this time.
The answers I’ve found are so unbelievably basic, it seems like common sense to someone not in it, I’m sure.
- Explain the illness to your child in an age appropriate way. To my 22 month old, we talk about ‘mommy’s sore tummy’. She wants pills when I have them, but explaining that they’re for ‘mommy’s sore tummy’ helps. I drink a lot of Coke at the moment as it’s about the only thing that stays down. When I’msick, she’ll go and fetch my Coke and bring me ‘juice for mommy’s sore tummy.’
- Maintain routines, and when that’s not possible, make special allowances. I can’t eat with the family at the moment, so my daughter and her daddy might snuggle up on the sofa and eat together, rather than sit at the table where my absence is felt and makes her squirmy to eat.
- At the same time, maintain discipline as much as possible. I don’t have the patience or the energy for the ‘twos’ at the moment, and once certain things slide it becomes really difficult to maintain peace in our lives. At the same time, prioritise what’s important.
- Make the small moments count. I can’t sit up and read, because sitting up makes me feel sick. I can lie on the sofa and read though, so when I can get my daughter to be still long enough, we lie on the sofa together and I read her a story. When I have ten minutes of energy, I feel it’s more important to throw a ball with her outside than hang up the washing.
- Where possible, maintain physical contact. Skin to skin isn’t just for newborns, and a cuddle can go a long way in restoring the feeling of connection.
- Eye contact is another essential. While excitement over the spider found in the garden or the thing Johnny did at school might be the furthest thing from your mind, eye contact, a smile and an enthusiastic “wow” can go a long way to making a child feel that you’re still interested. While 15 minutes is too long for me to play with my daughter, and I have to sleep for 3 hours to recover from it, I can spend 2 minutes holding her hand and looking in her eyes as she shares her news, whatever it may be.
- Accept that this is just how it’s going to be for a while, and make peace with that fact. It’s horrible, it’s lonely, you’re guilt stricken and heart broken, and there’s nothing you can do about it. Wallowing in the guilt only uses up energy you already don’t have.
These are my by no means expert ideas, and I’d love to hear from anyone else that’s been through similar. As always, I think it’s about being present, in the moment, and doing the best with what you have available to you.