How many times have I heard friends moan they are tired as their little one has been up during the night sick or is having a phase of being up during the night… Regularly I take a deep breath whilst thinking ‘if only…’  I hope one day that never actually slips out! After all, relative to their normal life they will be tired and to be perfectly honest I wouldn’t wish our lack of sleep on any of my friends!

Angel is now 6 and soldier 5. For the first 3years after angel was born I lived with a constant headache through lack if sleep. For those parent’s reading this think back to the first 3months of parenthood and how tired you were waking up constantly through the night and even up all night quite frequently and imagine it never actualy stops… This is what we and many other special needs parents have to learn to live with.

A combination of both children requiring oxygen at night time and pulling off their cannula’s regularly, angel having ADHD and both having sensory processing issues including hyper sensitive to noise. What does that really mean though? It means

• having to wait until the kids are asleep to put on their oxygen cannula then waiting again to turn the oxygen concentrators on so the air blowing up their nose doesn’t wake them up then up, down, up, down to reapply using the same elongated routine when they sense the air and pull it off!
• Angel going through periods where the oxygen routine would be a welcome rest. At the height of Hyperactivity Angel can go 2 full nights up buzzing… As she doesn’t stay still for 10 seconds it’s like a hurricane has swept through our house. As she has learning disability and no safety awareness constant supervision is essential.. After 2 full nights of no sleep it’s like flying to Oz and back again the next day, jetlag city!! How Angel keeps going I will never know, she’s like the Duracell bunny!
• Sensitivty to noise means – no kettles, tv on silent, no crisps, whispering… I’m sure you are getting the picture, if not they are up and the routine begins again…

I can only describe the permanent tiredness as like living with a hangover…

We can trully understand why sleep deprivation is a form of torture…a good night is 4-5 hours sleep and not necessarily all at once. Not something we would wish anyone else to have to experience but know many other families out there quietly cope with the same challenges too….

Sleep well tonight folks x