SOME ODDS AND ENDS FROM HERE AND THERE
For example--are you a stressed-out Moebius mom/dad?  You're not alone; here are some tips:
"I adore my four little (but lively) children, but they stress me out. How can I better handle the stress of raising children, along with everything else that I have to do?
This is a very common concern among parents. You need to find ways to relax and reduce your anxiety, whether it’s having a glass of wine (but not 3 or 4!), going to the gym, talking to a friend or meditating. Take time to remind yourself of the purpose of what you are doing, says Belsky. There is nothing more important than taking care of your children.
There are also ways to make life with children less stressful. For example, institute a quiet time during some part of the day, when each family member goes someplace and does an activity by him or herself, like reading or listening to music.
Learn how to set good boundaries, suggests Orloff. Set aside time alone to replenish because you cannot keep going non-stop. Mini-breaks can do wonders.
Sinha recommends seeking family and social support, when possible. This also benefits children, who love to interact with and hear stories from other family members, like grandparents. Sinha also emphasizes the importance of taking breaks."

Meanwhile, the need to continue to build awareness is made clear day after day--for example, today in Canada we see disabled parents having to fight to keep their newborn child, even though it seems clear they are able to care for him:
"A disabled couple in Mississauga are fighting to keep their newborn son after social workers threatened to take the boy away unless he receives round-the-clock care from an “able-bodied attendant.”
Maricyl Palisoc and her partner, Charles Wilton, are the parents of a healthy month-old baby boy named William. Both parents have cerebral palsy, a disorder that limits their motor skills and slurs their speech, but has no effect on their cognitive abilities.
However, the Peel Children’s Aid Society is concerned about the couple’s ability to take care of their son and has expressed an intention to remove William from their home unless his parents secure 24-hour care from an able-bodied person.
The boy’s mother told CBC that she and her partner do not want to lose their son.
"We know that we need help, but we know that we are the best thing for our boy right now,” Palisoc said. "We both wanted to be parents and now we are, and we don't want do give anyone control of our family."
So far, the couple have been receiving the type of help that the CAS has demanded, thanks to Ryan Machete, a program co-ordinator with the Coalition for Persons with Disabilities, which provided the funds for the services since William's birth.
Machete said he’s not convinced it is necessary to spend $2,000 a week for a caregiver when Palisoc is able to change diapers, breastfeed and to “do the necessities” that come with caring for a newborn.
“From what I’ve seen when I’ve been at the apartment … there’s really nothing that she’s unable to do,” Machete told Metro Morning.
However, he said, it is possible matters will become more challenging as William grows, but that doesn’t mean she won’t be able to look after her son."

And--once again today, Moebius Syndrome is in the news; read about little Kevin Nievesmassol, who has Moebius, and how some of his wishes:
"The excitement shown on 5-year-old Kevin Nievesmassol's face and that of his 3-year-old brother, Connor, told the whole story.
Together they enjoyed the new playground, which included a swing set and playhouse, in the backyard at his home near this mountain community, courtesy of the Kids Wish Network.
Little Kevin, who was born with Moebius Syndrome, a rare congenital disorder that makes it difficult for the facial muscles to move, was chosen as a "Wish Kid" and given a choice of gifts from the network.
Kevin has low muscle tone and is unable to speak or walk, so he made his choice from a picture book, opting for the playground equipment over such options as a trip to the beach, a cruise or even a hot tub.
“It is hard to explain," his father, Carlos Nievesmassol, said of his son's selection. "He chose this swing set but can’t walk yet, so it’s something that will be there for life for him.”
Once Kevin made his choice, Kids Wish, which is based in Florida, used several resources in Colorado to carry out the project.
Backyard Adventures Colorado donated the entire playground, which is complete with the playhouse, swing set and monkey bars.
Members of American Legion Young Guns, Post 115 in Rye, volunteered to install the equipment.
Scott Sexton, commander of Post 115, rallied troops and brought along George McGoff, post adjutant, Jerry McClure, senior vice-commander and members Ron Rybicki, and Mike Davis to help out.
“Kevin has had a rough life, but hopefully we brought great joy to him today,” said Sexton, who emphasized that helping youth is one of the four pillars of the American Legion values.
McGoff said, “It was a day well spent. Our post has never done anything like this, so when we got here, it was nice to see Kevin and Connor so excited.”
“Kevin has known it is a special day for him, and we love to see him happy," the youngster's parents, Kacie and Carlos Nievesmassol, said of their son who requires occupational, speech and physical therapy."


“Nothing contributes so much to tranquilize the mind as a steady purpose- a point on which the soul may fix its intellectual eye.”--Mary Shelley (1797-1851)