Things are getting better here at home. As you’ve read, our fall has been not so great. Kate’s mitochondrial disease has caused several acute episodes that have required hospitalizations. It’s been a rough go – especially for Kate. I would say she turned the corner as of this last weekend – her energy has improved, she’s happier and more herself. Her colour and walking are much better, and she no longer carries the pinched look of discomfort on her face. As a family we are getting back to our usual routine and Brian and I are catching up on all the things that get set aside when Kate is not well.
I know that people still don’t get Kate’s disease when they see her after she has recovered from an episode. “She looks great!”. “It’s so hard to believe she’s sick”. “So she’s better now?”. These are some of the questions that we are asked or comments made when Kate finally gets out hospital or medical day unit care after an episode. As I write this I do not want to sound ungrateful for well intentioned friends and acquaintances inquiring after Kate. I don’t intend to be – and I really do appreciate that people are concerned for her. But I am not sure what they see when they look at Kate. I am not seeing the same thing when I look into her pale and tired face, with that tinge of grey. The active little girl who won’t leave her stroller to play and is constantly wanting to be picked up and comforted. The happy little girl that sits quietly while others talk about her and around her. The exhausted little girl that can’t muster the energy to play with friends at the end of her kindergarten morning, so instead sits and waits for me to arrive. The five year old that has enough brain damage from her disease to have caused profound developmental delays.
What I am learning from these comments is that Kate’s illness is also hard on the other people in her life – her neighbours, her (adult) friends, her champions. They want her to be ok, and by stating as fact that she’s ok, maybe it make them feel better about Kate’s recovery and disease. I also know that it is very hard to understand her disease and how chronically unwell she is and how sick she can get. I know the intention is to buoy my spirits or make me feel better about Kate’s most recent recovery, but other times, it makes me feel like people don’t understand or appreciate that Kate is chronically unwell. I feel like I have to explain her illness and what happens to her, and the seriousness of it. I’ve come to realize through a lot of reading that this is standard territory for those living with ‘invisible’ diseases.
In the early days, I wanted to explain her disease to everyone I met and update them on her condition. I think I was also explaining it to myself, and absorbing the pain and loss a little more each time I told the story. Now I seem to hide from those conversations. I don’t want to explain anymore, I find it exhausting. I can pick up on the most recent part of the story, but to explain things from then to now, I can’t. And so I avoid the school yard, the local coffee shop, grocery stores when Kate is recovering. I shut down and cocoon.
I’ve been asked after this most recent episode what I need, what help we could use. I’ve thought about it a lot and wanted to be really honest about what help we could use. I have a really hard time asking for help from others. We have no immediate family close by to help us and I find relying on friends hard to do time after time. I thought it would make an excellent blog post for my CHEO Moms and Dads gig. Another blogger mom beat me too it though. So I’ll thank CHEO mom blogger Ashley for the following tips on how to support a mom (or dad) while their child is in hospital (with my added comments in bold). I also want to add that this list also applies to the week or so after a child returns home from hospital, when they may not be well yet and the family is still under stress.
If you know someone that has a child in hospital – here are a few tips on how you can help:
- child care (look after other children that they may have – and make it FUN! the kids need help too)
- making meals (they still need to eat, but may not have time to make something healthy or the desire to cook, being able to heat something quick will help them a great deal)
- if your close, you could offer to help with household chores such as laundry, snow shovelling, grass cutting
- make a hospital package (a tote filled with snacks, drinks, magazines, books and GC’s to the hospital restaurants/coffee shops)
- children can also use a ‘hospital package’; dollar store toys, stickers, videos, easy games (all age appropriate) can go a long way to helping a little one cope with the time in hospital
- be company for them – if they need someone to sit with for a half hour OR if they want to grab a shower but don’t want their child alone, you could sit with in the room for them.
- just being there. Call, email whatever you can…while they may not be able to respond immediately, knowing your thinking about them will help to lift their spirits
- don’t be offended if they don’t take you up on any of your offers. It is very difficult to accept help sometimes, but the offer itself will be extremely appreciated (and keep offering because we may not say ‘yes’ right away)
- sometimes we don’t know what we need, or don’t have the energy (or a brain cell to rub together) to have something specific in mind. In those cases, just do – there is always something that can be done to help others out.
- offer to watch children and let the mom (or dad) catch up on sleep when they do finally arrive home