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Living with Sanfilippo Syndrome. How to live with Sanfilippo Syndrome?
Can you be happy living with Sanfilippo Syndrome? What do you have to do to be happy with Sanfilippo Syndrome? Living with Sanfilippo Syndrome can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Sanfilippo Syndrome
This is a difficult question. There is nothing easy about living this life. The only blessing is that the children do not understand what is happening to them. They are the most energetic, happy people you will ever meet in your life. They are forever trusting, always loving, bundles of pure joy. You as the caregiver are charged with an impossible task. Always find the good in the moment. As much as I fully agree with that, I also understand the need to sometimes break down and cry. You have to allow yourself that release or it will build up and you'll just find yourself at a spot that you'll feel you cannot come down from. Find your support. You will need one person, or more if you're lucky, who will stick by you and not judge. You need someone who can just hear you and hug you. You need someone to love on your kiddo. Give yourself a break. Understand that you will not, cannot, know and do it all. Remind yourself that your child loves you unconditionally and expects nothing but love in return. Know that you will feel pain, regret, depression....but you will also feel more love from your sweet child than you ever knew was possible. They will help you find inner strength you never knew existed. They will help you see the small, beautiful things in life that you may have passed by had it not been for having their eyes to see them through. Love and laugh often. Take a billion pictures. Most importantly, breathe....breathe in their smells, their hair, their clothes...remind yourself that this is really what life is all about. Unconditional love. You have that right there just waiting on your hug....take advantage every moment you can xo
Posted Jan 1, 2018 by Danielle 3160
Keep your home accessible and safe for the child,
Provide safe areas where they won’t need 24-7 supervision to prevent injury . Get a stroller of push chair to use for shopping or day adventures so you can secure the child for safety when needed or if they get tired. Don’t use the chair unless needed , have them help push it when not using it . Provide appropiate sensory toys and places.
Provide safe areas where they won’t need 24-7 supervision to prevent injury . Get a stroller of push chair to use for shopping or day adventures so you can secure the child for safety when needed or if they get tired. Don’t use the chair unless needed , have them help push it when not using it . Provide appropiate sensory toys and places.
Posted Feb 25, 2019 by Patty Jesse 3000
Just live every day fill it with with good memories.
Posted Nov 3, 2019 by Anne-marie 2500
