Hi Working Dad,
You can call me Birdwings, which is the title of a poem by Rumi. It wasn't my first choice but the name actually suits quite well.
Our family was in your shoes many years ago, although our kids are now 14 and 16. I developed a severe muscle-wasting auto-immune disease which was triggered by my second pregnancy. It took 18 months to get a diagnosis and by this point we were beyond desperate. I couldn't roll over in bed and my husband even had to put the doona over me and carry the baby to her cot at night. It culminated when I tripped at home and much to my surprise, couldn't get up at all. I was so angry and upset at the time and I was crying and didn't initially put much effort in trying to get up. However, once I realized I was stuck, things shifted into a whole different gear especially as I hit the baby on the way down and she was screaming like someone possessed more out of concern I think for what was going on with me as she wasn't really injured. Meanwhile, our son was at large in the backyard. He was about 3 when I was eventually hospitalized and he was like your little one going at 150 miles an hour. Climbed up onto the back shed and called out: "Mummy, look at the mountains!" I almost died. He fell off once and I have no idea how I caught him because I couldn't even undo a bottle at the time. My husband was working full time about an hour's drive away. So, we were in a similar situation to yourselves. I rang him at work when I couldn't get up. In hindsight, he should've told me to call an ambulance, but the front door was locked. However, they could've found a way in but we weren't thinking clearly. Ultimately, I ended up in hospital for about 8 weeks and my parents took the kids while my husband kept working and took time off when I came home.
Looking at your situation, there's how to maximise what your partner can do for herself, your child and as your partner. It's awful to feel useless or a burden and have no role in life and become "in-valid". I have had and continue to have occupational therapy. Initially they looked at energy conservation strategies. This was finding ways to do things which required less energy.
Then, there's looking at things your partner can do with your child. I cultivated reading books to our kids as our special time together. We also went to parks with fences so my kids, especially our son, could run around safely within my energy limits. My sister in-law has used a wrist strap with her grandchildren and you see kids with backpacks on which do this as well. She has always felt it's better to keep the child safe and she can't run after them. I also belonged to multiple playgroups. There are different types of playgroups around and there are supported playgroups where there's more assistance. Playgroups are usually dependent on a fair amount of parent involvement, and I always found it difficult when it came to packing everything up at the end , although I was able to give some assistance. Attending a group where your partner could explain her situation to the organizer, could turn up a really good source of support. Many older people don't live near their own grandchildren or don't have children or grandchildren of their own but love young children. These people could be a second set of hands to your partner and I'm sure she has qualities that others would value in her as well. I'm very interested in photography and I'd given people photos of their kids.
I don't know whether your partner has tried to get onto the NDIS. That's made a big difference to me, but also has it short falls. My brother has fibro and I it's difficult to treat and struggles to find medical recognition.
The other question mark is sending your child to daycare at least one day a week to allow your partner to have a break. That's what we did and when I was at my worst our son went three days and our daughter two. We did get some fee relief through Brighter Futures who were helping us for a bit after my hospital admission. You can also get I think it's 3 months emergency fee relief. At least, you could when our kids were young.
There are quite a few organizations when support families with young children and I suggest talking to your local baby health clinic to get some contacts.
File this for when your child gets older, we put our kids through Scouts. They have been away on camps and they have given me time to rest without having to make a deal about Mummy's sick (which I hate).
Meanwhile, I know you must feel like there's no room for you to breathe in this situation, let alone have a life. However, it's important for you to take care of yourself and have some down time. Find something you enjoy doing even if it's only for 15 minutes and the same for your partner. Be kind. Acknowledge how you both feel maybe to yourselves and not necessarily always to each other. I've always seen my medical/disability condition as a separate entity to myself. "I am living with it". It isn't me, although I usually talk about it as "my autoimmune disease" which theoretically undoes some of that thinking but not in practice. "My disease" is so rare that it virtually is "my disease".
Every year that my children grow up, our lives get easier. You're really at the thick of it now, but it does get better.
Lastly, it was always very important that I maintained my relationship with the kids as their Mum, even when I was really unwell and I was sleeping a lot and feeling pretty useless. It might seem easier for someone else including yourself to take over your partner's parenting role, but I encourage you both to think creatively and find ways where she can do and be what she can and your family can get through this together and okay.
Hope that helps.
Best wishes,
Birdwings
I hope some other parents are able to jump on and give you some support as well, feel free to let us know how you're going.
