Its not so long ago that being diagnosed with a rare disorder would leave you (or your family) isolated, with no way of contacting others in the same boat. You might meet 'professionals' who would know something, however small, about your condition, but you were unlikely to actually find other people who knew what the day-to-day was like, how you actually felt emotionally, not just physically. For this reason, I am grateful for the advent of the internet. Through email, blogs and online support groups I have found people with children with Tabitha's condition all over the world. Ok, there aren't many of them, but they ARE there, and we are making connections.
One such Mother is Louise, whose son, Ben, is in his late teens. I follow her blog and find her insights both thought provoking and interesting, and incredibly well written. Please take time to read her blog post here. She so eloquently describes her feelings and experiences, and I found it so touching, and this post has made me feel very emotional today.
'In each other's eyes, we are enough'. Never a truer word spoken.
Thursday, 28 April 2011
Monday, 25 April 2011
Easter Brings New Skills
I am so proud. Yesterday, Chris tried really hard to get Tabitha to climb up the 2 steps on the slide by herself and slide down, and she just couldn't do it. But today, from nowhere, she climbed up and slid down all by herself! I suppose she did it about 5 times, and then I got this video.
Doesn't she look like a pro? She just acts like she's been doing this for months, not for the first time today. So proud.
Thursday, 14 April 2011
Respite day
Every now and then, we get to enjoy a respite day, where Tabitha is looked after by a lovely lady, who takes her out and does fun things with her, and we get to spend time with just Ellie. We had such a day on Tuesday, and we decided to use the time to take the dog on a very long walk around a local nature reserve. Here are some photos I took.
In the reserve, there are a group of ponies. Ellie loves to spend time with them. She sees all wild horses and ponies as a challenge, and she has to do all she can to gain their trust and respect. Her persistance has led to them now allowing her to touch them.
My little girl using stepping stones to walk down the stream.
Posing in the trees.
Sitting on a tree.
It was a lovely walk, and a lovely time free from the burden of special needs, buggies, and humming (Tabitha's current, very annoying, trait). A carefree time for all of us, and we loved it.
Tuesday, 5 April 2011
Rant time
Dear Coalition Government,
I want to explain something to you. My child is disabled. Very disabled. And she gets sick. A lot. The result of this is that despite everyone telling me I should be working, I can't. We are a single income family. I didn't ask for this, or want this. I didn't work for 4 years to complete an honours degree, and work in research for 10 years afterwards, thinking 'Oh well, when I've had enough, I'll give up working and make my husband support all of us'. My husband and I had a partnership that was 2-way financially until the birth of our little girl.
I now find that the financial situation is changing. We may find out benefits cut, our allowances decreased. Can I point a few things out to you please? We live within easy walking distance of a local school, but it isn't suitable for our daughter to attend. The LEA agree it's not suitable. We looked around, and found one that was, and she is progressing wonderfully there. But it's 7 miles from home, meaning I have to complete a 14 mile round trip twice a day to ensure she gets a good education. You are taking massive amounts of money from me in tax on fuel just so my child can get the education she deserves. This is of course without counting the numerous hospital appointments that we are required to attend, all over 22 miles from our home.
My child has needed supplementary oxygen provided via an electrically powered machine for the last 5 years. The power that this machine uses carries a VAT charge. More taxes paid to you as a direct result of her disability.
Don't get me wrong, we are not on the breadline, we are getting by. We have a reasonable standard of living, although it is precariously teetering at the moment, and dependant on the interest rate staying low so that our mortgage doesn't shoot up. If it does, we may have to leave the house we have, which is currently suitable for our family, and meets all our daughter's needs, to move to a cheaper house, which may need adaptations to enable her to live there.
We have financial concerns, not the least of which is the future. We have been able to make no provision for the future since our daughter was born, due to the financial pressure we are under day to day. Our child will probably never become independant from us and will always require a high level of care, how will we provide that when we have no ability to prepare in advance?
Mr Cameron, you were the father of a severely disabled child. You know the emotional and practical struggles that come with parenting a disabled child, and yet your current policies are set to add further financial strain to families such as ours. Is there any wonder so many parents of disabled children divorce?
Instead of punishing the vulnerable, remember that they need support. Also remember that a society is judged by how it cares for it's weakest members.
Lisa
I want to explain something to you. My child is disabled. Very disabled. And she gets sick. A lot. The result of this is that despite everyone telling me I should be working, I can't. We are a single income family. I didn't ask for this, or want this. I didn't work for 4 years to complete an honours degree, and work in research for 10 years afterwards, thinking 'Oh well, when I've had enough, I'll give up working and make my husband support all of us'. My husband and I had a partnership that was 2-way financially until the birth of our little girl.
I now find that the financial situation is changing. We may find out benefits cut, our allowances decreased. Can I point a few things out to you please? We live within easy walking distance of a local school, but it isn't suitable for our daughter to attend. The LEA agree it's not suitable. We looked around, and found one that was, and she is progressing wonderfully there. But it's 7 miles from home, meaning I have to complete a 14 mile round trip twice a day to ensure she gets a good education. You are taking massive amounts of money from me in tax on fuel just so my child can get the education she deserves. This is of course without counting the numerous hospital appointments that we are required to attend, all over 22 miles from our home.
My child has needed supplementary oxygen provided via an electrically powered machine for the last 5 years. The power that this machine uses carries a VAT charge. More taxes paid to you as a direct result of her disability.
Don't get me wrong, we are not on the breadline, we are getting by. We have a reasonable standard of living, although it is precariously teetering at the moment, and dependant on the interest rate staying low so that our mortgage doesn't shoot up. If it does, we may have to leave the house we have, which is currently suitable for our family, and meets all our daughter's needs, to move to a cheaper house, which may need adaptations to enable her to live there.
We have financial concerns, not the least of which is the future. We have been able to make no provision for the future since our daughter was born, due to the financial pressure we are under day to day. Our child will probably never become independant from us and will always require a high level of care, how will we provide that when we have no ability to prepare in advance?
Mr Cameron, you were the father of a severely disabled child. You know the emotional and practical struggles that come with parenting a disabled child, and yet your current policies are set to add further financial strain to families such as ours. Is there any wonder so many parents of disabled children divorce?
Instead of punishing the vulnerable, remember that they need support. Also remember that a society is judged by how it cares for it's weakest members.
Lisa
Feeling Blue
I don't know why but today, it would seem, is a blue day. I have a few concerns that are playing on my mind, but as things stand, I can't do anything about them at the minute, I just have to bide my time and wait for the outcomes. It doesn't stop me worrying about them though. I think it could be that while the Op was hanging over us, that was the most pressing concern, and now that it over and done with, I'm finding time to get stressed about other things.
Tabitha did react as expected to the GA, and last week up until Saturday was dominated by vomiting. Sunday she got better though. We had another breath holding episode on Sunday though, where she went blue and passed out again. It's been a while since she did that, and actually, it was pretty upsetting to see. She used to do it several times a day, and I was very blase about it, but with it being a while since we've dealt with that, it was actually scary to see. Also, hubby was dealing with her, and so I got to watch for once. I didn't realise how scary it looked when she lost consciousness.
Parenthood. Ain't it just great?
Tabitha did react as expected to the GA, and last week up until Saturday was dominated by vomiting. Sunday she got better though. We had another breath holding episode on Sunday though, where she went blue and passed out again. It's been a while since she did that, and actually, it was pretty upsetting to see. She used to do it several times a day, and I was very blase about it, but with it being a while since we've dealt with that, it was actually scary to see. Also, hubby was dealing with her, and so I got to watch for once. I didn't realise how scary it looked when she lost consciousness.
Parenthood. Ain't it just great?
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