It has taken me a while to put my thoughts together for this particular post. I guess because I wanted to gather all my emotions and have the capability of putting them into words. (I promise it won’t be too sappy 😜)
I have recently fallen into some situations that have made me realize that I am very oblivious to some things. Mostly, to the fact that many people around us do not know much about Down syndrome. Hey, sometimes I forget what all comes with Down syndrome because I treat my Remi like she is a typical child most of the time. Which I am reminding myself, lately, that it isn’t a correct way of raising her. (More on that later on this post) I want to encourage family, friends, and just anyone to read on the basics of Down Syndrome. In all honesty, reading up on any disability would enhance anyone’s empathy level and knowledge on how to approach a family or a person with a certain disability. Here is a link to an informative page about Down syndrome: https://ghr.nlm.nih.gov/condition/down-syndrome
If you get the chance to read through that linked page, you will be able to understand why I shouldn’t “treat” Remi like I would Jax. I would be doing her an injustice by doing so. Why, you ask? Here is a scenario: if she was acting out because she was trying to “say” something to me but I can’t understand her, would it be right for me to be stern with her? It’s not her fault she cannot speak clearly nor say some words. I see that “want” in her eyes. She soooo desperately wants to talk and keep a conversation with us but she can’t…. this is one of the hardest parts for me. Jax is 1 1/2 and he speaks more clearly than Remi but he has the muscle tone for it.
One of our doctors has a grandson with Down syndrome. He made a comment to me that only those that have the experience of caring for one of these beautiful children, would understand. I was struggling with Remi staying in one place and not run the doctor over with our stroller. He asked, “It’s hard, isn’t it?” I asked “what do you mean?” His comment was this; “It’s hard to know when to discipline them because it’s hard to know when they understand you or not.” So so so true!!!!
This brings me to my last thought. I honestly struggle with trusting anyone to watch my kids. Even MORE so for Remi. I have this huge fear that seems to be coming true the older she gets. People whom do not understand her and how Down syndrome affects who she is will want to see and treat her like they would a typical kid. I hope that with reading everything on this post you can see how that can be frightening. I’ve had some of these experiences lately and it has hurt my heart like nothing else in life. I don’t want to get too into this last thought because it brings out a lot of emotions including anger, sadness, pain, and the feeling of letting her down as a mom. Underneath my daughters frustration and her lack of understanding some things is a beautiful little girl. She is a grandpa’s girl and a grandma’s side kick. She gives her momma hugs out of no where when she sees her momma sad. She gets her daddy mad but knows how to win him over the next second. She loves to mess with her brother but will fight for him when someone tells her they are taking her brother home with them. She loves to get people’s approval and strives to make us proud. I’m more patient. I’m more understanding of ANY mother. I don’t judge those mother at the store when their child is throwing a tantrum or they are half dressed. I have learned that being a parent to any child is hard but loving them makes it so worth it. What more can ask from this little girl?!