I have to let you all know that I typed this up over 6 months ago!! A lot has changed since then, but posting this now just felt right!!
Over the last week, I have had this nagging feeling that I need to write this! I need to put this out there!! As, most people know my oldest daughter has Down Syndrome and she is 6 years old and on her second year of Kindergarten. I am an open book. I am that mom that says take me as I am or leave me be. Everyone knows about J and they know I have another little girl that is "typical." (Or as typical as kids can get!) But here is the thing, there is more!
I want to confess something, something that not many people know... I feel bad! I feel bad for all those people that have been in my destructive path the past 6 years! I feel bad that J was never able to grow a friendship with two little girls that were born about the same time as her because I was not able to have a friendship with their parents due to my grieving over the loss of the child I didn't get. I was selfish, I wanted a typical child like they got and it was hard! I feel bad because once I came out of that period I didn't know how to reach out and try to restart those friendships, I was lost and so I just said, "Forget it, I don't care!" Even though I did. I cared deeply! I wanted my old friendships back.
I feel bad that I have not had a constant job over the past 5 years. I have dabbled in many different areas and have loved a lot of them, but I was never able to stay due to other circumstances! I want to be able to be there for my kiddos, which means if a meeting comes up or a class party I want to be able to go! Coming to the realization that I have to be a stay at home mom and make that work, has taken me through many different jobs and brought me across the path of a lot of amazing people. I feel bad because I loved being an office manager, but cannot go back due to the need of a flexible schedule and I could never ask the owners for that and feel good with myself. They have a business to run and that would not be fair! But I am so happy where I am today! I get to work out of my home and help change peoples' lives by introducing them to Norwex or help them give an amazing cake to someone special! Though, I feel bad because my husband works so hard and we don't have consistency. It is hard! I just keep reminding myself that I am doing what is best. I get to pick up J, talk to her teacher and find out how her day was. I get to take her to speech and learn how to help her grow in her communication skills and I get to be at her classroom parties and her sister's parties and no one feels left out. It is what is best for our family!
I feel bad because I get defensive over words and looks. I want to be able to go through life and just see my children happy and able to make friends! But, sometimes when I go to parties for other kids, I just see the looks they give J and wonder how I can educate them. Knowing that for some kids, no amount of education is going to make them see how wonderful my daughter is! I once had someone tell me that not all parents want everyone to know that their child has a disability, like I do. I was so hurt that day, but I look back on the time in my life when the comment was made, and I know that the person saying it did not mean to hurt me and I feel bad because I pushed people that made these type of comments out of my life. However, I want to make it clear that my daughter wears her diagnosis on her face and no amount of shaming or belittling will ever change just how amazing she is.
I feel bad for other parents that don't have a child with a disability when I have to point out that their child may have done something that was not nice. Not because those parents are bad parents or because their family has intolerance, but because their child just does not understand and needs to be helped to understand. Those parents, whose children go to school with my daughter and just want to help their own children to flourish and grow! They just want their kids to become amazing, successful people! They didn't ask for my daughter to be in their class or their groups. They just wanted to give their children a "typical" school experience and my daughter has to come and muck that up. I have to step in and say, this is the new typical for all kids. Diversity and learning how to treat all people, no matter their ability is the new normal and I feel bad because those parents just don't know what to say or what not to say all the time, so they ignore. I get it and I love them all! I could put here what I want to hear or want those parents to do, but on any given day it could be different! I just ask for all parents and their children to treat our family as you would want us to treat yours! The golden rule! We have been blessed with amazing families at Jenessa's school! However, we will always have those parents, no matter where we go, that don't realize that we are a family and we are human just like them! We celebrate when both our girls succeed and cry with either of our girls are hurt.
I feel bad for our youngest because she is growing up in a hard spot! The other day she was so cute and so heartfelt and told us that when she gets older and can live on her own she wants to live with J!! Josh and I said ok honey that sounds perfect! And I thought oh honey, I would love that, but we just don't know what that would mean if it was to happen. As it is, Clarissa feels she needs to be a "mom" to J and I wish I could tell her all the time that she didn't, but sometimes we need help and NEED Clarissa to watch over Jenessa! And as the youngest, she shouldn't have to watch over her sister and I feel bad because she knows she does, even though we do not tell her that she does. I can already see her blossoming as a leader and a helper! She just wants to help everyone and I feel bad because would she if she didn't have J to "watch over?" Would she be a 4 year old going on 15 if she didn't feel a little responsibility from having a sister with a disability? I feel bad because I want her to be able to be a kid! I hope that she is getting to be! However, I have to say I am so proud of her because she is growing into such a strong leader! We have stated that she is going to change the world some how! We just don't know how yet! So, I am not sorry that she is becoming strong willed and compassionate!
And I feel bad because my daughters are growing up in a society that still does not accept everyone for the true person they are inside! We still judge based on others look, talk, and materialistic things. What I want for my daughters is for them to always be happy with who they are on the inside and not feel constant judgement for things they cannot change, such as a diagnosis!
And finally, I feel bad because I am not sorry for being "That" mom! We all know the mom I am talking about! The mom that fights for her child's rights, even if it means upsetting the professionals! It means that I do stand up to other parents if their child is not being compassionate, no matter if it is to my daughter or another child. I will point out to a professional when their actions are not appropriate. I feel bad for all this because at one point and time, I was the professional, not doing what I really needed to do because as a teacher there are a lot of things on your plate to take care of! I am not sorry though because no matter what the most important thing to me, is my daughters! And I will fight for my daughters' needs to be met!
