It is not “normal” for a 2-year-old to give himself 10 syringes of medication in one sitting.
It is not “normal” for a 1-year-old to know how to separate syringes and put them in a bucket of water to soak.
It is not “normal” for a 3-year-old to know how to put a spacer on his brother’s mouth and nose to give him his inhaler.
It is not “normal” for therapists to know the ins and outs of your household better than your family members.
It is not “normal” for doctors and children to be on a first name basis and know all about each other’s lives.
It is not “normal” 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 “normal” for 3-year-old to know the ingredients and how to make a specially formulated smoothie.
It is not “normal” for a 1-year-old to know where pills go and how to crush them.
It is not “normal” for an 18-month-old to know how to find and use a communication device that he does not need.
It is not “normal” for an 18-month old or a 3-year-old to know how to clean a site before giving an injection.
It is not “normal” 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 “language.” 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 “normal” because that is what they know and see. For them “normal” is having a sibling with a rare disease and all that encompasses. “Normal” has so many different definitions and so many different facets. There is something beautiful in having siblings to remind you of that.
Photos submitted by contributor.
My son was diagnosed with a rare disease (Hurler's Syndrome) about 4 years ago. It has been a journey dealing with his condition and all the complications. In addition to that we have 2 other children and trying to balance their needs with their brother's needs has been a fun (?!) road to travel. As any mother of 3 young boys trying to take care of my own mental health and self care is a challenge. When you throw in all the medications and doctors' appointments and such that come hand-in-hand with a rare disease, some days it is hard to find myself amongst the chaos. Regardless, I love my boys and and am on this road for the long haul. We try to find a reason every day to laugh and we make sure they know they are loved every day. Some days that is how we make it through the day.
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