Hydranencephaly. Seeing this word now doesn’t scare me like it did the first time I saw it, when the doctors were telling me this was my son’s diagnosis. Hydranencephaly doesn’t scare me now because it’s something we have conquered, something we own, something we faced head on and live through every day. I was shocked, confused, scared and had no idea what my life would be once I left the hospital with him. I’m sharing him today, getting a little more personal than I have in previous posts. Having a child with special needs is something most people don’t fully understand, but I am a mom just like every other mom and I just wish people would see past his diagnosis and just see him as a 9 year old little boy 🙂
Sometimes Caleb wants to eat his broccoli, sometimes he doesn’t. He complains every time I pick his nose or clean his ears, and he always wants a bite of whatever I’m eating. He hats it when I’m on my phone and he loves when I run in the parking lot with the shopping cart. Besides the fact that he doesn’t walk or talk, he is just like a regular kid. See, I choose to focus on these good things but everyday there are people that focus on his disabilities and to this day, there are people that come very close to getting punched in the face over their ignorance.
I try so hard to be a good mom. To not get frustrated when Caleb doesn’t want to eat dinner. To not feel guilty when I go out for date night or a night with the girls. But #momlife is HARD. Most people can look up reputable day care facilities to send their kids where they can learn basic Spanish and have circle time. This isn’t an option for us. You know those horror stories where kids with special needs are shown on the news being abused….that is what I have to worry about. Because Caleb can’t tell me what’s wrong. Caleb can’t tell me if someone was mean to him at school, or that he’s hurt that the kids at the store laughed at him. In my heart of hearts, I know that God gave Caleb a special gift- he isn’t aware of the harshness of this world. He doesn’t realize that kids, teenagers, and even some adults are staring at him and disrespecting him. But I do, and I see it every day and marvel that these people exist. I have to make sure I feed my kid good food, and bathe him, and send him to school and keep him entertained, just like any other mom. But I also have the added responsibilities of sheltering him from cruel people and wondering if today will be a day I have to stop a child from laughing or pointing at him. I understand that EVERY parent has struggles. I don’t discredit the struggles of parenting “normal” kids, I just really wish that people would take 1 small second before complaining about things going on with their kids. I wish parents would never, ever say to me, “at least you don’t have to deal with Caleb throwing a tantrum in public or talking back to you.” Please dear God, don’t ever say this to a special needs parents. Can’t people understand how insensitive this is?
Also parents, let’s talk to our kids. Tell your kids that not everyone looks like them, not everyone has the same abilities and skills and likes and dislikes. Tell your kids that some kids are born different but this doesn’t change the fact that they are kids. My son doesn’t deserve to be stared at. If your kid is staring at my kid, don’t usher them away and reinforce this idea in their head that something is wrong with my kid. Come say hi. Because this is Caleb… having fun on Halloween just like any other kid.
Yes, he’s in a wheelchair, and this is how we include him…we make him the best damn Halloween costume so that he doesn’t miss out on these types of experiences. We make his costume amazing so that other kids stare at the kid with the cool costume and not the “kid in the wheelchair.”
Our struggles will get harder as he gets older, and bigger. But we will deal, like we have for the past 8 years. Because let’s be honest…when you get to look at this smile everyday, you can pretty much handle anything.
Later, when we decorate the tree, he will love seeing the lights and listening to the Christmas music we will play. He will love ripping the paper off of his presents just like any other kid on Christmas Day.
Parenting is hard. But I LOVE being Caleb’s mom. He still cuddles with me. He blows kisses and would rather sit next to me with my arm around him instead of being anywhere else in the world, and I love that about him.
I am so blessed.