About Me

Living a Life Less Ordinary

Thankyou for stopping by to find out more about me!

Hi my name is Natalie and I would like to welcome you to my site.

I am a work-at-home-mom, and I am very grateful to be at home with my two boys’ who have special needs.

It took me the better part of 15 years living with Special needs children to be able to talk about what was wrong with them, and not cry!

For me that was a major breakthrough, accepting that I cannot fix what’s wrong and make it better for them, is something that I think I will never get right!

The boys both a recessive genetic disorder called Andermann’s Syndrome.

This syndrome is a disorder that damages the nerves used for muscle movement and sensation (gross motor, fine motor and sensory neuropathy).

They both have a malformed and very little tissue that connects the right and left halves of the brain (Corpus callosum), and with the two halves of the brain being unable to communicate with each other properly, many of the normal functions of the body, are just not present.

Neither of the boys have ant reflexes at all, and they both have severe low muscle tone (Hypotonia).

As they have gotten older, there muscles have started wasting away, and they have gotten progressively weaker.

There limbs are most affected and they have very little sensation left, so we have to be very careful with bumping them or putting them into a bath that’s to hot, because they can’t feel the damage until it’s too late.

Luckily, and I use that term very broadly, only Tegan has the tremors and the seizures associated with Andermann’s.

Some of the other known features of Andermann’s syndrome:

  • Contractures
  • Scoliosis
  • Seizures
  • Facial muscle weakness
  • Drooping eyes
  • Gaze palsy
  • Intellectual disability
  • Depression, anxiety, agitation, paranoia, hallucinations
  • Obsessive compulsive disorder
  • Widely spaced eye’s
  • High arched palate
  • Big toe crosses over small toes
  • Club foot
  • Shortened life expectancy
The doctor’s are always amazed, that both boys have been diagnosed with the same disorder, yet they have both been affected differently.

For me this has been a blessing, because not knowing what’s going to happen next or what’s going to go wrong, is sometimes a blessing. I am a worrier by nature and was after having gone through a scoliosis correction with Darian, I was expecting to go through one with Tegan at roughly the same age… I was panicking!!!

Tegan and Nats But Tegan’s scoliosis is progressing much slower and his last set of X-rays show no noticeable development in the last year, so for now we have a breather.

Having children with special needs is the most difficult, heartbreaking thing I have ever had to do in my life!

I struggle to upbeat all the time, to be patient, to consider myself blessed, to get up in the morning, to put a smile on my face everyday and pretend that I’m the worlds best mommy like everyone makes me out to be!

I am rude to people who stare at us in shopping centres, I want to strangle the next person who says,” I don’t know how you do it, if it was me, I’m sure I would never cope as well you do!”, some days I want to run away or slit my wrists, depending on how sleep deprived I am, if I have to pour another glass of cold rink, fetch, carry, lift, pickup, bath, dress, feed, medicate or clean up one more child’s poop!

Does that make me a bad mom?

No it makes me human…

Through all the battles we fight everyday, and the uncertainties in our life, there is only one thing I know for sure and hold onto with both hands, it is my life line…I love my boys with all my heart, and they love me back, unconditionally! When those not so little arms come around my neck and lots of slobbery kisses are handed out…

All is right with my world!

If you would like to read more about my journey and learn how I became a work-at-home-mom, make money from my website and how SITE BUILT IT! Works, then please read on for more of my story, and don't forget to pick up your FREE WAHM eBook...

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