
It is not ânormalâ for a 2-year-old to give himself 10 syringes of medication in one sitting.
It is not ânormalâ for a 1-year-old to know how to separate syringes and put them in a bucket of water to soak.
It is not ânormalâ for a 3-year-old to know how to put a spacer on his brotherâs mouth and nose to give him his inhaler.
It is not ânormalâ for therapists to know the ins and outs of your household better than your family members.
It is not ânormalâ for doctors and children to be on a first name basis and know all about each otherâs lives.
It is not ânormalâ for a 4-year-old be able to turn on and off an oxygen tank and to know how to put a nasal cannula on.
It is not ânormalâ for 3-year-old to know the ingredients and how to make a specially formulated smoothie.
It is not ânormalâ for a 1-year-old to know where pills go and how to crush them.
It is not ânormalâ for an 18-month-old to know how to find and use a communication device that he does not need.
It is not ânormalâ for an 18-month old or a 3-year-old to know how to clean a site before giving an injection.
It is not ânormalâ for a 1-year-old to know when to be gentle and when to slow down for their older brother.
UNLESS you are a child with a rare disease or a sibling of a child with a rare disease.
When that is the case you grow up being able to talk about medical procedures and tools as though they are a second language. You grow up with therapists and doctors as close to your family as friends. You may even be on a first name basis with them. You know how to encourage your sibling and how to foster some independence in them. You know when you need to be calmer or slower so they can catch up. You see how to administer medicine, clean syringes and create specific foods you or your sibling need. This is not because you are responsible for your sibling but because your house has had to adjust to the needs of your sibling. You observe the things your parents, the nurses, and the therapists do on a daily basis and it becomes your normal. It is what you know and what you understand because it is the language in your house.
As a parent I see how my son and his siblings are learning this âlanguage.â On one hand I grieve for the fact that they need to know it and that it is such a part of their lives. On the other hand I am so proud of them and how they love their brother and treat their brother like he is ânormalâ because that is what they know and see. For them ânormalâ is having a sibling with a rare disease and all that encompasses. âNormalâ has so many different definitions and so many different facets. There is something beautiful in having siblings to remind you of that.

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source https://www.programage.com/news/Not_Normal__But_Normal_For_Us_1612416606883520.html
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