Before Oliver's diagnosis of spina bifida, Aaron and I had only heard of the condition in books.
We both had taken medical classes in college, and it is briefly mentioned in the textbooks we had.
I am usually not one to share a lot with people I meet, but with Oliver I am more than happy to share his story and all he has been through.
The banter usually goes like so: “Oh how adorable, how old is she?”
“Actually she is a he, and Oliver is (insert age at time of conversation here)”
“Oh he is so small!”
“Yes, he was actually premature and born with spina bifida, so he is still catching up”
“Ohh, I had a neighbor whose son had spina bifida”
. . . Banter continues, but that summarizes my point.
Now, in the United States, spina bifida affects 0.7 per 1000 births.
Granted, I know a whole group of people with spina bifida now that we are apart of the community of support online and such, but I am talking about strangers like my new neighbor or a random at the pediatricians office.
I don't take it in the wrong way, I just can't help but feel like it is their way of trying to relate to what we may be going through.
No one really expects to start a random conversation with an individual and be presented with a comment that their child has a disability.
It may even be them trying to soften the blow of their, “he is so small” comment, but what we have gone through is more than the comment of you being an acquaintance to someone with spina bifida.
I appreciate the encouraging words, how the neighbor you knew whose son had spina bifida walked and went on to play basketball, but that may or may never be for my own son.
We knew when diagnosed, that every outcome is different.
My son's L5 lesion of the spine may have affected different nerves than your child's L5 lesion.
Where my son has the ability to bend his knees and kick, your child may have the ability to bend his ankles, whereas Oliver can not.
To me, this support comes more beneficial in me sharing my son's own unique story and sharing a fact or two about his diagnosis.
Just having someone there to listen.
So maybe next time if you ever find yourself in the situation and they are willing to share, just listen to the unique, courageous and amazing story of this person; because I guarantee you it will be far different than anyone else you have ever known.
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