This is my Facebook post from 3 minutes ago:
“Sitting here (still sweaty – haven’t showered yet post run). Have finished my outdoor winter urns and am now sitting down to write a blog post. I feel chilly and though I’m not a coffee drinker, what I wouldn’t give for a warm latte right now.
(Wish I knew how to use our old and decrepit coffee maker. Then again, we probably don’t even have coffee in the house. Sigh.)”
Those of you who know Kate and who are special needs parents yourselves probably stopped at the first sentence, ‘What, she’s sitting down during Kate’s waking hours?!’
Yes I am. And the reason is that Kate is not here. She’s having a weekend sleepover!
About 6 months ago we finally said yes to the team at Rogers House who have been offering support to our family for years. Kate has been supported by the palliative care team at CHEO since she was 15 months – they were the first step to improving Kate’s coordination of care. When Kate was 18 months old, we had our first stay at Rogers House post admission. Kate was still not well enough to be home and we wanted to see how respite would work for our family. On that first stay I wouldn’t leave Kate. Instead our entire family moved into Rogers House for that Mother’s Day weekend. I can’t say it was ideal. I wanted to be home. But what it did do was give us a glimpse into what ‘the House’ was all about and the care the children received there.
Kate did not return to Rogers House until she was 5 1/2 (this past summer). I am stubborn and I am highly protective of Kate. I am also fiercely independent – with a (sometimes misplaced) CAN DO attitude. It’s not easy or natural for me to ask for or accept help. I really have to be coaxed (coerced?) into it.
I also did not want to leave Kate. I have never left her alone at CHEO. I could not imagine leaving her overnight anywhere – let alone for a couple of days. That has never happened with anyone – with the exception of evening babysitters. I felt worried she wouldn’t be safe, that her ability to express her needs – being so limited – would put her at risk, that she would be sad and upset – which wasn’t necessary (I didn’t need a break that bad I would tell myself).
I also felt guilty.
Kate is unwell so often, when she is well I feel like I should be spending every moment with her. I should be maximizing that time and doing memorable family things – or mommy daughter things with her. I shouldn’t be sending her off somewhere so that I can have a break. But I felt a tug of war of wanting to be with her and needing a much needed break from her. Guilt.
So when I do say yes to help, I’ve come to realize it’s when I am totally worn down. Last year Kate’s health was pretty unstable. Her mitochondrial disease is unpredictable and as much as we can string together periods of wellness (touch wood), we also have months of Kate being very unwell. Kate was hospitalized in September, October, November, January, March, and May of 2012 and 2013, and the in between at home wasn’t great. By June I was ready to say yes to someone.
It was hard the first time. Very emotional for me. I stayed for the first day and played and ate with Kate. I met the closely knit nursing team (I already know all of the palliative care doctors). I met the volunteer staff who prepare meals, play with the children, rock them, take them outdoors to play, and greet them at the front door. I met Kat, the amazing child play coordinator whom Kate has come to adore. It never ceases to amaze me at these young (20 something) women who have such incredible empathy, strength and love for our kids. I debriefed the team on Kate – medications she was taking – her likes – her dislikes – what she eats and how often (all the time)- how she might be trying to communicate something to them (a cry means this, a scream means that, this sound means she wants crackers, this sign means she wants to play) – we talked about bath time and bedtime – and how her bed should be set up so she wouldn’t fall out. I told them what an episode looks like and that if Kate had any distress that I was to be called right away. And I trusted that they would.
And then I left her – and I cried on the way home – and I missed her as soon as I left her. I called to check in 2-3 times that first stay. It was an overnight. I couldn’t wait to go and pick her up the next morning. I slowly realized that was more for my comfort than hers. She was fine. The staff at Rogers House are incredible. It truly is a home, and she is treated like a princess. She truly enjoys going and staying there. And after that first stay, our social worker said to me, ‘Ok, let’s book her next one.’ (Carol – never lets me off the hook).
We decided as a team – Kate’s team – that keeping her familiar with the House and the routine of going there – would be good for Kate. Kate thrives when she has familiar situations, and if we kept our visits to ‘just when we need them’, the time between visits might be too long and would mean needing to get Kate familiar all over again. (I am beginning to think now this was just a ploy to be sure I stuck with the ‘program’ of getting support and respite time. I am grateful for it.)
Kate has visited Rogers House 4 times now. She is currently on her 5th stay. The team is so excited when they know she is coming. They plan around her. They know she is very active and requires full time supervision, so they plan their volunteers and try to be sure Kat is working. They keep her nurse(s) consistent so that Kate has someone familiar putting her to bed. They adjust to new routines and schedules and to how well Kate is feeling. They know her and they adore her. She is part of their family now. I think this was part of the purpose. Extending Kate’s family – getting her to know her palliative care team more intimately so that she can lean on them and rely on them. I have come to realize in these few short months that Kate needs this. She needs more support than Brian or I can give her. And that support needs to be special – as much as friends and family support her – she needs that CHEO/Rogers House support as she copes with and lives with her disease. When she is admitted to CHEO, hooked up to IV, feeling terrible, she needs to be able to have a visit from Kat and have her eyes light up. She needs Kat to know that she loves stickers and books and Dora – and trust that Kat will bring those to her and play with her and support her. She needs that extended ‘family’.
So I am grateful that I was pushed to accept this. I didn’t want my child to need Rogers House, or to need the care they provide. I don’t want to think of Kate as requiring palliative care. It’s still very hard for me. I didn’t feel like we belonged there. But I realize, Kate is not sick when she’s at Rogers House. She’s sick at CHEO. Rogers House is there to support her throughout her disease – and to support us.
So I am sitting in a quiet house – and it is hard the first 24 hours. When Kate is home, either Brian or I are ‘on’. There is no downtime with Kate, or time when she doesn’t need us – or demand us. There has been little rest between her hospitalizations and time when she is unwell at home. But it is hard to settle into the quiet. I am still not skilled at going to bed on time or getting a good night’s sleep when she is not here. I miss her terribly, and listen for her at night, even though I am grateful for the break. So far we have had Kate stay for 48 hours (2 night, 2 days). The first day I want her home, and by the second day I am ready for her to stay longer.
So far we have stayed home during her visits. This time I am actually home alone (which is so nice). The nurses always ask me what I did with my time when I arrive to pick Kate up. ‘Nothing really – I cleaned, organized, did errands, worked on my to do list’, I reply. They are disappointed, they want me to go for a manicure or pedicure or massage or spa day. But honestly, I feel relaxed by getting things done that I can’t do as efficiently with Kate here. I am starting to plan what weekends without Kate might look like and less focussed on missing her. I think eventually, Brian and I might try a weekend away together during one of Kate’s stays. Apparently that is something couples do. 🙂
For now, I am happy to have the time and space to breathe and exhale.