I am forever hearing and reading that people say that having a disabled child in your house. While I do not doubt that for some or even many this is true at the moment they make that statement. Unfortunately I don't necessarily agree.
Of course there are times when my son Hayden brings laughter into our lives but sadly it has to be said that he and everything that comes with him, is quite some burden right now and for the rest of his life. I know that burden is a very strong word to use but to us living this life that is what it feels like. Hayden will for the rest of his life have to live with us. He will be reliant on us to keep him out of hospital and alive on a daily basis. His 6 hourly medication, constant need to be hydrated, eye drop 5 times a day and two hour breakfast routine, his constant behavioural issues (he is severely ADHD), the interrupted sleep I get and of course the many hospital appointments and hospital stays. Then keeping his medication supply in stock, filling in the constant paper work and ....well the list just keeps on.
Naturally we do this because we are Haydens parents and we love him. Then there are times that we think about what might have been and why us? But don't judge us for this. You should try leading a busy everyday style of life with two busy children. Then add a disabled child like Hayden who is like having a very needy whirlwind in your house every day and you might just have the smallest glympse of what it is like.
Within all of this I know the health system of New Zealand does a good job by Hayden. Sadly family, in my opinion, are the forgotten link in it all. I don't think any one health organisation has stopped to enquire how my family and I are, are we stressed, how we cope, how my other children are coping. No one sits there and really understands Hayden and consequently what that means to our lives. There is very little respite and certainly very little spontaneous activity in our lives. We can't just spend the day relaxing or sleep in. I could go on but I think you get the picture.
There is nothing like before and after photos. Yesterday McKenzie got braces and so we thought that before after the moment would be fun. Then the next two years we will see the moving of her teeth so they all actually sit in a line. She will also be getting bottom braces but the top ones need to be moved some before that can happen.
Here is McKenzie before we got out of the car and then 30 minutes later.
Why is breakfast such a difficult meal to encourage my children to eat especially my 11 year old. I know we are all tired. The getting up at 5.30am is a real killer and worse when Hayden wakes up before 5.00am.
On the same hand on know that it is such an important meal that without breakfast your ability to function effectively throughout the day is severely limited. Not only that it is a long day in our house and without food energy will sure wain and childrens behaviours sure can turn to the negative.....just like mine at times.
So in the last week or two I have trying to work out about breakfast for my children, especially my daughter who is playing a lot of hockey for the next six weeks or two.
This is what I have found works especially when DH is away for work and I am having to sit with Hayden for the next 2 hours and do his food and medication. This is when, unfortunately, the children need to organise their own breakfast, where I try and make it as easy as I can so they can come to where I am sitting with Hayden.
porridge, in pre organised packages. I know this is an expensive way to go but is easy for Andre who is 8, to manage.
a variety of cereals from Weetbix and Weetbix bites. Easy to serve with yoghurt made in my Easy Yo yoghurt maker.
spaghetti on whole grain bread (toast)
not forgetting the drink of milk
Now my children are able to make something to have in hurry, something that is filling so that they are not hungry again until morning tea time.
Have you ever wondered how tired, tired really is?
I constantly feel in a state of tired. I know, I always blame it on having to get up every night to tend to Haydens needs knowing full well that he will, for the rest of his life, need me to tend to his needs. Then I should add to this list the rushing around like full time taxi service in the after school hours and keeping house while DH is away for 13 consecutive days, tuck in a few days of work and there you have it....everything that makes me tired.
I know that I am not the only one who suffers the effects of children and life all tossed into one bowl but just sometimes I wish that I could wave a magic wand and give myself some sleep moment in storage so I could use them when I really could do with a few extra house of sleep and more energy to cope with the rest of my day.
So for me sleep can happen as and when I need it. I can snooze in the car waiting for my daughter bus to arrive in in the afternoons, on the chair as I sit down for a few minutes to unwind, etc etc. To make this happen I need a couple of conditions;
1. The space is the right temperature for me to sleep/ snooze.
2. Eat and drink foods that support sleep.
The sleep/ snooze needs to be short and snappy. Just enough to take the edge off the need to sleep and revitalise my energy somehow. Not too much so I don't really want to wake up.
Then because I get broken sleep I have a couple of things I do
1. I don't turn the lights on when I am up in the middle of the night. In fact I could almost do the whole tend to Hayden thing at 0130 hrs.
2. I have plan B for any eventuation already sorted so I don't have to think too hard and can make decisions easily without waking myself up too much. If I have to walk myself up more then I am probably getting ready to take a trip into the hospital with Hayden.
3. Have the house and bed at the right temperature so I can go straight back to sleep.
I am no way an expert on these things but for me who is on the go these few things really help.
Just sometime I feel really lonely. I guess there are many things that contribute to that feeling and at the same time there is nothing that really stands out. Sometimes it can be all about Hayden. With him being disabled and not fitting any support group. Someone who really understands the difficulty of having one really challenging....behaviourally, medically and intellectually .....person in the house. Perhaps it is just that DH has been overseas with work for 13 days (just like now). Or maybe it might just be no matter how hard I have tried since we returned to New Zealand from living overseas (6 years ago) it has been difficult developing new circles of people in Auckland ....it is so impersonal here.
Sometime I just sit here alone in the evenings wondering what more I can do to fix the situation but I must be stale and see to be stuck.
Any way no need to sit here feeling sorry for myself. A little scrapbooking therapy and I am ready to get on with it.
(You can find the links for this page here at Nuts4digi)
July was one really busy month. You would have thought with a two week school holiday break I would not feel like I have just run a marathon. Then when I sat down to looks at my notes for this post I was left thinking that I must have been exaggerating about my month. Who knows but this is what it looked like.
6 weeks after our little airport car (DH works at the airport) we finally get it back and it is looking like nothing had happened to it thank goodness.
14 days of school holidays during the winter school holiday. It was cold but fine with those chrystal clear winter days. -1 being the lowest morning temperature. The frost in the cows water trough was so frosty it was still icy at 10 in the morning.
2 children spend on wet day during the holidays telling me that they are baking and they know what they are making. So I sit back and let the excited duo go to it. At the end of the mornings baking, two different batches of cookies later my kitchen was completely cover in dishes of the dirty variety.
1 is the number of days Hayden had to spend in hospital with a last ditch effort to prevent the need for surgery. An all day stay in Day Stay at Starship Hospital hooked up to a fluid to thin blood just incase the blockage was a stubborn blood clot. Luckily we had the help of the Clown Doctors to entertain us as well as the Play Therapists
This school term is seeing a committment to 4 consequitive days of hockey for McKenzie each week. I am not sure who it is harder on, her or me. This effort is partly her club team and partly for her Auckland representive team. Luckily it her that loves her hockey. Pity her little 11 year old mouth is not coping so well.
McKenzie player her 1st representative game of hockey this year. Not a pretty photo but all I have at the moment. I have to say after moving associations it sure looks strange with her dressed in blue and white and not the Counties Manukau colours of red, black and white.
1 is the number of new all terrain buggies the Health system of New Zealand has generously provied us with so that I can continue to take Hayden out when I exercise and when the saturday sport is rudely early and his medication is not finished. He looks very little in it but I know he will never out grow it as he is unlike to grow any taller than 140cm.
143 photos is what I took in July. I am trying to capture a reflection of daily life.
and finally a little bit of everyday life
2 is the number of alarm clocks I have in my bedroom far across the other side so they are not turned off in my sleep. One is set for 0130hrs and the other for 0530hrs.
I am linking this post to Notes on Paper so pop on over to have a look at what othes numbers are like.
My daughter McKenzie plays hockey. I have written about this before many times. This year we decided, as she is very passionate about this sport, to move her club registration out of where she had been since she was five, to a new club falling under a new provincial structure. This decision too my DH and I much thought and discussion. What really helped seal the decision came down to these few things
she is passionate about the sport and we needed to make sure she had all the opportunties avaliable to her.
under the club and provincial structure she was in she was going to run out of girls/ youth to play in a team with thus leaving her to play in adults team once she was in Year 9 (13 years old).
we were looking long term for a health club environment to be involved in so she could form friends outside of school in a positive sporting environment.
So this year was a year of new for both her school and sport.
She has been playing representative hockey for a few years and this year with the move and many more girls participting she might not have been seen as good enough by the decision makers this year to play representative hockey.
So after 3 trial days, 95 girls attending, and total exhaustion on her part, she was picked in the team putting her in the top 16 girls in our new province. I have to say right here and now I was stunned, and excited, to see her picked. I know that my daughter is good and well skilled. She trains hard, listens carefully and is really brave out there on the turf. The reality this year was that she was relatively unknown this year which just might have made a difference. I had been trying to tell her she needed to dream that she was good enough to trial and be picked but also if she was not picked it was only those three men decision and next year was another year. A very fine line of support to give.
Anyway to cut a long story short. Her team played their first game in the weekend. My very excited but somewhat nervous daughter put on her new strip and off she went.
Now I just have to remember to actually take my camera out when I am watching her play so that I can get some action shots.
So I guess that the moral of my little post is to make sure you dream. You just never know, it just might come true.