Hello!

155 Comments

When I pictured having children I never pictured special needs children. I didn’t think it could happen to me. That type of thing did not seem real to me.

When my second child was born we knew something was wrong from the start. But even then I didn’t think it could happen to us. Yet at 12 months old she was as floppy as a newborn baby. We kept getting fobbed off by the pediatricians until we moved to a country town. She took one look at this 18 month old that could barely sit up and immediately ordered an MRI.

I was 34 weeks pregnant with my third and last child when my world was rocked. The MRI showed an abnormality in the brain. All they could tell me? It’s a leukodystrophy. It’s hereditary. It could affect your unborn child. We don’t know much so go google it.

The shock put me into premature labour but they stopped it and my third child was born at 37 weeks. We thought she was fine because she reached all her milestones only slightly late. Except for talking. They started talking about autism, but decided to do an MRI to rule out Leukodystrophy given that its genetic…and they found she had an identical brain scan to her sisters

This happened between 2008-2010.

In 2010 my marriage also broke down. Probably due to the stress of it all. I thought I would never find someone. What did I have to offer? Three children, two of which had a terminal condition that required nappies, tube feeding and wheelchairs for life? I thought I would be better off getting a dog.

Until Terry came into my life. He saw kids, not kids with disabilities. He embraced the life of a special needs parent and learnt to nappy change and tube feed (and he had never had kids). He understood I could not have any more kids and yet didn’t faze him. He just wanted to be with me and my children. He was by my side in 2012 when both girls got diagnosed with autism (on top of leukodystrophy). And when we had to get measurements for the latest lot of wheelchairs.

He is by my side now as I struggle to find a car to take two wheelchairs….and struggle to actually pay for it. You see we are both on pensions and you can’t get a bank loan with them easily (plus my ex has ruined my credit history). Because of this I cannot get finance. It is sad because I desperately need a wagon to fit the chairs in or I can’t take my girls out. DSC have said this (I only have a crappy sedan). But their response when I ask how do I afford it? Get a loan….not everyone can.

But the question I keep getting asked is how do I do it with two highly complex special needs children? And what would my life have been like if they were “normal”?

Firstly, I do it because I love them and they are my life. Secondly, how the hell would I know what it would be like if they were “normal” because they wouldn’t be the same children I have today. Life might have been easier, but it could very well have been harder.

Perfection comes in all shapes and forms. And it comes in the form of my children whom I love very much.

 

  • What ifs are always huge.
    Thing is that if the children had been “normal’ it doesnt mean that happiness follows. Sometimes we are better with what we know and love then with the ‘ what might have been’

    Reply

  • tried all of this keep everyone one happy is my goal

    Reply

  • oh wow. this is amazing. first i am angry that no-one gave a stuff when you obviously were asking for help in regards to your child. then i am happy that you have found an amazing man- that is rare!. then i go back to being angry about the fact that you don’t have the basics that you need to care for your children and i understand how hard it would be to be in your situation but the government doesn’t supply you more. i think that you have summed up your story beautifully. you are amazing and strong and i hope that you have climbed your mountain and are at the top. your love is amazing and i think that you are incredible.

    Reply

  • We have a son with autism and although a handful at times yes I agree it’s still a blessing. There are many avenues and things that have opened us to us.

    Reply

  • I hope you got the car you needed, and some finance somewhere

    Reply

  • Hope you manage to find the car that you need to fit the chairs in!

    Reply

  • Good luck with sourcing the car you need – is there any possibility that a charitable organisation could help make it happen?

    Reply

  • thanks for sharing was a great read

    Reply

  • Enjoyed reading – thanks for sharing.

    Reply

  • this was a great story . I’m glad you shared it.

    Reply

  • What a beautiful person, and such a huge heart!

    Reply

  • Best of luck,sending happiness and strength.

    Reply

  • Thank you for sharing your inspirational story, and I wish you the best of luck.

    Reply

  • Yes – we do most things because we love our kids.

    Reply

  • thanks for sharing your personal story

    Reply

Post a comment
Like Facebook page

LIKE MoM on Facebook

Please enter your comment below
Would you like to include a photo?
No picture uploaded yet.
Please wait to see your image preview here before hitting the submit button.
Your MoM account


Lost your password?

Enter your email and a password below to post your comment and join MoM:

You May Like

Loading…

Looks like this may be blocked by you browser or content filtering.

↥ Back to top

Thanks For Your Star Rating!

Would you like to add a written rating or just a star rating?

Write A Rating Just A Star Rating
Join