R is for Rest and Relaxation

It is rather ironic to me that I began writing this blog entry on the plane on the way home from “vacation” where my husband and I had the opportunity to get away for a few days without the kiddos (thanks to their adoring grandparents!), and during which WE spent one entire day of our trip, ONLY eating and sleeping! Literally we slept in and had a late breakfast and then took a nearly 4 hour “nap” to wake up for a late dinner then turned in early because we were so exhausted! Talk about a need for some R&R! I attribute some of our exhaustion from the events earlier in the week, traveling around, shuttling kiddos, grocery shopping and cooking for our daughter’s special diet, etc. and then the emotional stress of a funeral and saying goodbye to Gigi, but the rest of the exhaustion I have come to realize has been a culmination of living life for the last few years with our Little Lady A!
It wasn’t til I sat down with a picture book that one of the grandmas had made of our visit last year that I truly realized why we may be so exhausted! It was in those pages that I saw my little girls face… with no smile, with barely a grin, with more often a sullen scowl and furrowed brow and a blank little stare. If you would have asked me about our visit a year prior, I would have said she was doing well, because, as my husband reminded me, she wasn’t screaming bloody murder for hours each day and night (which had greatly preoccupied our minds for her first 18months of life). But, as we have come to know, “Doing Well” is a relative term…her face, in those crystal clear photographs, painted quite a different picture than the miraculous smiles we see on her face today and giggles that fill our ears (and hearts) with joy. When we returned from that trip almost a year ago, things got bad for our little one, going from “doing well” to worse than I could have imagined, health wise, we discovered her sensitivity to chemicals, we saw self-destructive “tantrums, fits, episodes, spells” that sent us to a neurologist and eventually put us on this “mitochondrial disease” path that we are still investigating today.
The more parents that I meet and talk to who have kids with a huge spectrum of challenges (from asperger’s to cerebral palsy and from autism to muscular dystrophies), I am quickly learning that “rest and relaxation” is a luxury, rather than a given, for so many caregivers. Heck, even parenting with a child without any health concerns brings with it many sleepless nights and sleep deprivation, when you throw in ear infections, bad dreams, wet beds, night terrors and “other things that go bump in the night”.
Sleep is not only natural for babies kids and adults, but ESSENTIAL, our bodies need rest to grow… and while it is normal for babies to cry and wake up in the middle of the night, it is not normal that at 6 mo, 1 year, 18 mo, 2 year and then 5 years later… your little one is still not sleeping the whole night through on a consistent basis (because this means neither are YOU!). At times like these, my mommy gut tends to send up red flags saying something is going in here! It could be a symptom of am underlying medical condition (the number of conditions that cause sleep disturbance is mind boggling), a nutritional concern or even a toxin you cannot see or smell (but you kiddos sensitive system is reacting to it, and not allowing their brains to rest). Below are some links to explore…in an effort to help another parent out there get some R&R! For us, it was reflux..and figuring out the cause of our daughter’s reflux has taken us nearly 2.5 years (and many, many sleepless nights), but we believe we have a pretty good idea of what causes it and how to control it (pharmaceutical-free) at the moment. (see S is for… my next post, for more details!) Until then…Sweet Dreams!

I highly recommend reading “What’s Eating Your Child? K. Dorfman” in the chapter called ” The child who wouldn’t fall asleep” p. 157, below is her list of  Sleep Wreckers.

Sleep Wreckers can include: ear infections. allergies, headaches, rashes, reflux, gas/bloating, constipation, belly aches, muscle aches/pain, overtiredness, anxiety, depression, anger/agitation, changing the clocks, medication , puberty, hunger, any illness, sleep apnea, low calcium or magnesium intake, sensory processing disorder, seizures.

  • underlying medical conditions that can cause sleep disturbances
  • nutritional deficiency that can cause sleep disturbances
  • toxic exposures that can cause sleep disturbances (In Environmental Neurotoxicology, it is reported that any of 119 different chemicals can cause SLEEP DISTURBANCE)

Also this is a local neurologist and sleep specialist (whom we have not seen) but who has helped a friend of mine getting her son (who is on the autism spectrum) to sleep better (or sleep at all!) with the use of melatonin and light therapy, his blog contains lots of useful and interesting sleep info and tidbits!  Dr. Josh Rotenberg:  http://pedzzz.blogspot.com/  


photo by Enlightened Photography

Good Night Sweetheart, Good Night! 


















About Empowered Advocacy

www.EmpoweredAdvocacy.com Pediatric Patient Advocate
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