It got me thinking.
Last year, when R was recently diagnosed, I struggled with the question, "Does this mean I have a special needs child?"
I was also asked that of several well-meaning people, although at the time it was hard to answer. Because R seemed so normal aside from his speech delay, it was really hard to come to terms with whether or not he was a special needs kid.
Admittedly, I as a parent would not have actively chosen to have a kid who has special needs. I realized that while I am taking this journey with R. But for reasons I have yet to fully understand, God has blessed us with this little boy, SPD and all.
And by His grace, I know that there are others in worse situations than us.
I am in several Facebook groups. In one of them, I read of a little guy named Caleb Munn. As of this posting he is eight months old, and is recovering from a liver transplant.
Yes you read that right.
Caleb was diagnosed at two months old with a severe liver disease called Biliary Atresia.
I followed Caleb's story along with many others, praying for him and for his parents, Brian and Brittany. Brittany was part of one the groups I was in and she would post about her feelings on the diagnosis. My heart ached for her as she fought for tests to get answers for her baby's prolonged jaundice, and at her devastation when they found out about his condition.
Biliary Atresia is a very serious disease that destroys a baby's liver if left untreated. The Children's Liver Disease Foundation defines it as "a condition in which inflammation develops within the bile ducts around the time of birth. The inflammation can occur in any of the bile ducts both inside and outside the liver. This leads to bile duct damage, reducing the flow of bile, which causes scarring of the liver."
Doctors had told the Munn family that Caleb would die before he turned two if they don't do a transplant as soon as possible.
Thanks to God, many people volunteered to be a living donor. That's because the liver is one of the few parts of the human body that grows back when a portion is removed, according to the American Liver Foundation. And they found a perfect donor in Caleb's dad, Brian.
To date of posting, both Caleb and Brian are doing well. If you'd like to know more, the Munn family has set up a Facebook page documenting their journey with the disease.
So why this post? What does it have to do with parenting a child with special needs?
It's because I feel, as a parent, that we love our children very much. We hate to see them go through something as crippling and devastating as a terminal illness, and then face the possibility of our child recovering fully, recover with some damage, or not recover at all.
With special needs kids, it's hard to watch the kid you love with all your heart struggle to go through life living with a condition he/she didn't ask for.
I'm not saying parenting a child with a chronic illness is the same as parenting one with special needs. What I'm saying is that both break a parent's heart into a million pieces because we want what is best for our kids. We hate to see them suffer. We hate to see them sick. We hate to see other people bully and stigmatize our child because of ignorance and misconceptions.
This blog is for awareness after all. All I'm saying is that we need to make other people aware of many conditions that are affecting our lives. This world is already extremely unkind to people who don't conform to what the world says is standard. As a result, those who won't, or can't, conform are shamed and lambasted and treated as less than human.
This should not be.
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| Saw this image in Facebook. I don't know who made this, so if you do, please let me know so I can properly credit. |
We need to support each other, especially parents of children with special needs or chronic illnesses. Parenting is hard enough without these issues. Imagine having to parent and at the same time deal with something so devastating.
At the end of the day, this post just boils down to two words.
Be kind.
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