What is rest?

Over the last couple of days I have had a break. Fantastic right? Well…maybe. I’m not relaxed. I still feel tired. I have tried to do some of all-the-things-I-think-I-want-to-do-when-I-have-time, and have managed a couple of them. “Why are you not taking full advantage?” you ask. I’m asking that too. So what makes a break effective? Maybe it’s time away, rather than time out.

You see while my kid is in respite, I am here too. I visit a few times a day and wonder how she’s going most of the rest of the time. It’s an unusual situation. She had a difficult break away from us a while ago, so we are helping her to become comfortable again and own the power of her independence when she is away from us.  I am having a break from the body-tiring aspects of caring for her but my mind is not resting. I’m still thinking and worrying and answering questions when I pop over there.  It seems that although feeding and rolling and hoisting and changing are all tiring, the most wearying aspect of care is mental and emotional.

The year so far has involved more paperwork and management than a small company. This kid deserves the very best out of life, yet bureaucracy determines a huge amount of work is needed just to hope for a level playing field for her. I can feel the energy draining with every call/email/complaint/form. Some prefer not to use the term carer but I use it to differentiate between “mum stuff” and the rest. Being her mum is a pleasure…the rest can be exhausting. Even while having a physical break the mental work continues. To really rest I need to be able to hand it all over. To trust she is cared for and comfortable is a challenge. But she, the sassy teenager,  needs time away from me. And I need time to switch off. So this is a start.

 

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The Divine Ms M

While making dinner my mind wandered to what tomorrow has in store. Oooo it’s Thursday so I will see you. I thought.  But I won’t. Tomorrow is Thursday but you don’t come anymore. It’s been three weeks now and Friday eves are just not the same. No one has died…but our world has changed.

It is such an oddity to have someone so quickly get to know your daily routine. To hang out in your home when you are not there. And to even be privy to what the messy drawer contains! It can (did) seem like an invasion when first you enter the disability world. There are so many people to help/run/fill up your life. I have had times of wondering about the necessity of it all. It was once a relief when we lost case management because at least there would be one less meeting. Largely that’s just the way life is for us and the people are lovely. But sometimes we are blessed with a diamond.

Support workers come into our circle because we need them. It can be a tough gig. Being close to a little girl and her family while still keeping professional distance is a juggle. The responsibility of implementing medical training while on your own in a private home can weigh heavily. There is no MET team at the ready here. No big red button on the bedroom wall. But some treasures do it gladly…and very well. Ms M is one such gem. She has been with us for seven years!

We miss her. For a long time now she has been so much more then a carer. I could arrive home , have her help get Missy into bed and debrief about whatever obstacle we had that day. Counsellor…check. She had experience in this disability world…a fountain of equipment/process/funding knowledge. Advice…check. She was…is…such a great communicator with our girl and loved to share stories and music. Teacher…check.

Things have changed. For her and so for us. It is the right thing. It is not easy though. But now there doesn’t need to be professionalism. Now we can change in a good way. Now she can just be friend…check.

Spinning

Being the parent of a child with high needs is hard. Not whinging…just saying. These kids have an uncanny knack of changing plans for you whenever the fancy takes them. And I don’t mean in a can’t-go-to-the-supermarket-right-now-because-baby-is-still-asleep kind of way {although I have been there and it is annoying}. I’m talkin’  all-organised-to-go-away-and-have-a-long-needed-break-until-the-kid-ends-up-sick-in-hospital. That’s her style. If she can, she will super-size that sucker.

You know what else is super sized? Mother guilt. Yep I have it coming out the wazoo. She is home from hospital and is improving. She loves the support workers who are willing to step into the breech and fill the respite gap for me. But do I go? Or don’t I go? If I thought I was tired before then several days of constant care and suctioning and cleaning her up and doing sooo much washing and “sleeping” in a hospital “bed”…well you get the picture. I am tired. This job is beyond full time and there is no annual leave. I hear and read much about caring for the carer….but the carer has to be able to drag themselves away first.

Last week I was struggling with the idea of leaving her in respite. Today is a tug of war between leaving her {and her brother who has been sick too} at all and being so desperately in need of time out and so very disappointed at the thought of not having it. There’s a song in my head….you spin me right round baby right round…

Let {it} go

I have trouble relinquishing control. There, I said it. It is a common issue with many of us my-kid-has-extra-stuff-going-on club mums. We usually only admit it to each other. But here I am…out and…well out.

I have had a tough day. An ugly crying while driving kind of day. Missy is going into respite next week. “Great”, you may think. It is…and it isn’t. I certainly need a break. It has been a year since I had more than an evening off duty. But I find it so very hard to put her into care. Then, as I nearly had my head around it, plans were changed for me. It was for a good reason but that made little difference to my reaction. Cue red, wet eyes and sniffling nose.

The princess is a complicated creature. She has multiple medications, a feeding schedule to follow, equipment to be familiar with and some funky things to watch out for. And then there is her lack of voice. Care is made more challenging for a child who cannot speak up and say “I’m hungry” or “I usually have a story before bed”. So I worry.

We will do it. We both need to. I will go to plan B and trust that all will be well. And she, the brave one, will have a lovely time.

Letting go…while holding on

How great that they have a school bus. Indeed. Terrific. The difficulty came in putting her on it, with strangers,  at age six. The lavender in my front garden very nearly had a dose of fertiliser that morning as the bile rose in my throat. Quite unfair for such a calming plant. Very exciting for a red-headed girl on her first day of school (albeit at 7am….yes, seven!). Terrif-ic for her mum, apparently, although I saw it more as terrif-ying. The juxtaposition of a parent of a child with complex needs. Being able to access support services is incredible but trusting others with your precious child is such a challenge.

Normal children, whoever they are, seem have a more gradual introduction to non-parental adults. The girl’s brother had his first sleepover at his grandparent’s house when he was about two, played with friends me alongside for quite some time before he was prepared to go solo and clung to his dad’s leg at his first kinder meet and greet. The girl had ladies from our local council looking after her and therapists poking about at early intervention before she was one. She stayed at a respite house by the time she turned four. Confession time. These experiences say a lot more about her courage and acceptance than mine. At Early Intervention I was in the same room. When the physiotherapist wanted to conduct a parent session in the adjoining room from the children I kept looking through the glass in the top of the door. The council ladies were nice enough though a little bossy. They suggested I go out during respite time (Oh is that what it’s for?). So I did. Outside to weed the garden. I do recall after about a month walking to the post box on the corner to post a letter….and rushing back. She did indeed stay at a respite house…so did her brother and I, in the family accommodation out the back. I find it hard, really hard to let her go.

A sensitive carer will embrace the delicate nature of gathering child, bag of goodies and list of instructions from an anxious parent and tutt away their concerns. When the list includes a seizure management plan, the bag contains a suction unit and the child is non-verbal and tube fed one tends to see the white of their eyes. From the blatant jaw dropping to the confident We’ll be fine there is always an element of fear. I use the term additional needs because all children have needs, all are precious….but some have a little more going on. The extra stuff means extra people. Therapists, respite workers, doctors, nurses, aides, case managers, coordinators. And it means there is an expectation of parents to allow these folk into our lives and homes (whether the loo is fresh or not) and trust them with our kids. It began really early, too soon. When I had to leave the hospital and she couldn’t. A tiny, very unwell two-week old had her first sleep over without mum. And she has had a smaller dose of separation anxiety than me ever since.

All the work we invest as parents is for one purpose. To grow our kids. The bonus is we grow ourselves. I grew a little over the weekend. No not literally…sigh. The little girl who has already been on camp twice (only one night each time…are you seeing a pattern yet?) but never been to a friend’s house to play without me, did just that. You see she has some new people in her life. Good, kind and generous people. The kind who know some of her favourite things to do and set out to share them with her. The sort of family who see a cheeky kid who happens to be in a wheelchair and look forward to what she can teach them. What she can teach them. Tears roll down my cheeks as that sinks in. They took her bag with all of its tricks and smiled. And that made it so much easier for me to let go…for a little while.