Hello all! Here we are in our new home and we are totally loving it! It is quite small for a family of four but we are finding that it's super cozy! We are just in love with it! Nothing like going a few weeks without a place of your own to make you really appreciate finally getting one.
So, today I want to focus on something that's been eating at me. Actually, there are several things that have been eating at me... but all in due time. The subject of annoyance today; anyone that is not raising a child with Down Syndrome that says to me that I have no need to be upset because it's not hard. Please, go ahead and kick me while I'm down... throw a little mud on top of me while you're at it.
Truly, Kloey is an angel of a child. She's happy, friendly, smiley, hardly cries without purpose, and is very snuggly. That being said, this is a hardship for me. My child has a mental and physical delay. The older she gets, the more obvious that delay is. Even compared to other downs kids her age she is very delayed. Who wouldn't be sad about that? When I watch a child half of Kloey's age doing things that, technically, she "should" be doing, I get sad. My heart twists inside of me. When I realize that she doesn't understand something as simple as waving bye-bye, then it is sad. When I realize that, mentally, she is at the level of a 6 month old then it is sad. Right now she is fairly easy to deal. But she is a baby folks! Do you honestly believe that the toddler years won't be difficult? When she knows that she should be able to communicate with us and realizes that she can't... do you think that will not be hard? When children her age are walking and she can't.. do you think that will be easy? Do you think that it is easy for her to go through therapy every single week to learn things that come so easily to other children? Do you think that it wasn't difficult when it took her 5 months to learn how to hold her head? An accomplishment that most babies achieve by at least 2 months.
Then there are the constant thoughts of what the future holds for my baby. Only a very naive person would think, "Oh, everyone loves a child that has Downs. No one will be cruel to her because you can see that she has a disability". Really? Then obviously you have never been a part of the real world. People with any form of mental or physical disability tend to be rejected and shunned a lot more than most people. It is a fact of life. They are largely misunderstood and even feared. It is unfortunate but it is true. Of course, there are those high schools and what not that vote a downs girl into the position of homecoming queen, etc. But that doesn't happen very often. That is why it makes headline news folks. Because it is news, not common place.
Kloey is my blessing and my trial. Do not downplay what I go through everyday. It is not nice. To tell me to stop struggling with something that is very hard for me is hurtful. To tell me that it is "silly" to worry about such things that I worry about is quite rude. Honestly, comments like that make me feel very guilty about my natural feelings. Now, I love my baby. There is no doubt about that. Do not take this post as a complaint against my fate of having a daughter with Down Syndrome, because I would never change that. Not ever. But, just because I choose to see the light and the blessings in this does not mean that it is easy. It is not easy. This is hard for me for a lot of very different reasons. She is not hard for me. She is my darling. She is my angel. She is my light.
Much love.
