I'm sitting in my bedroom trying to find ways to think of something else, trying to find ways not to cry, trying to find ways to pull it together not only for my family, but for myself.
Since May, I have done nothing but worry and struggle about Emersyn and her future in education. Since May, I have hardly slept-not only because my one year old wants to nurse every two hours throughout the night, but during those windows he allows me to sleep my mind wont stop worrying and thinking about what I should say to help my daughter and family create the BEST environment for her to learn and grow as a human.
In May, we had a meeting with the school. Initially, I thought it went well. But upon further inner play back I realized the special ed program was never going to be enough. I realized the special education director was living in a world where people with Down syndrome only existed.
"This is a speaking society."
These are the words spoken to my husband and I while discussing how the school planned to communicate with our daughter since her primary source of communication was ASL.
If you have ever, and I mean EVER, been in my family's circle-you will know that I have worked myself into a crazy person trying to get Emersyn to "speak." I finally gave in to what the therapists suggested and started to work on sign language ON TOP of getting her to speak. When I played these words "This is a speaking society" over and over and over in my head, it felt more like a punch to the gut, no, a punch to my very core of motherhood.
"My husband has a niece with DS, and she signs a little and speaks a little and that's just kind of how it is."
Also words spoken to me about the expectations we should have for Emersyn's future in communication, spoken by the special education director who we are supposed to trust with Emersyn's education.
Heartbreaking doesn't even cover the emotions I felt. Anger doesn't even cover it. Hopeless is a pretty good word I feel right now. Hopeless. Yes. That is the word I feel. Defeated.
So here we are Down syndrome awareness month. I cant think of a single thing to post. I cant think of a single positive word to say right now. My heart is so heavy with disappointment. Not only in the words spoken to us regarding my THREE YEAR OLD'S FUTURE, but also in myself. I gave up. I pulled out. All my years of trying to advocate for awareness and the one person who would be holding everyone accountable to really dig in and educate Emersyn to her fullest potential, doesn't believe there is potential there. Doesn't believe there is an opportunity to change the way people think of Down syndrome. All those words I spoke and typed trying to change people's hearts and perspectives and hoping that once Emersyn entered the school system, people would know she is amazing and yes there is lots of work to do-but if we all work together there would be amazing results. Results that could change the world. Change Emersyn's World. But no.
I failed completely.
I saw a friend post an image that said "God gave you this mountain to prove it can be moved." I just never know if I am moving it or not. But I am trying to my heart and soul's best ability. I hope I am not letting my Down syndrome community down every day. I want to make them proud that I am a part of it so so badly.
Should I have fought more? Maybe. I found out really quickly that if I was to fight more, I might end up needing to take stock in wine. And I might end up becoming a bad mom, wife, friend, sister and daughter. I found myself sad, I found myself speaking all too passionately at dinner time to the point that my children were only seeing me sad or upset.
I'm sitting here typing this blog, while my amazing husband skipped a class and took my kids outside to play, because I'm so upset I break into random fits of tears, and I just cant think of anything else but what I'm typing. While everyone around me is celebrating the enormous improvements coming to our school, I am mourning the small mindedness of the special education department.
Is this world only willing to embrace you under the circumstances that you must always remain pleased and positive with everything you get? Even if you know it is never going to be enough?
Typical parents: what if upon your child's first day of preschool their educator told you that they knew someone who looked like your child was only able to graduate high school with a C average and couldn't attend college and that was kind of how it is-in regards to what you should expect of your child's life-would you leave them with that person?
That is how I felt. If I leave my child under this person's direction-I would be letting someone with the most negative ideas of my daughter influence her life. We are already behind everyone else, working five times as hard as everyone else, so why WHY would I let someone put us even further behind? Why would I let all of my family's hard work be lost?
My husband says people may mistake my passion for arrogance and if that is your idea of me-I apologize. I have no intention of giving the idea that I think I am better then anyone. I am so scared that I won't be able to do Emersyn justice for what she is capable of, I refuse to leave any stones unturned. Im scared. So I work. So I research. So I speak out.
My husband says that in all of my posts to try to create awareness and advocate for Emersyn and Down syndrome, I may have scared people away. I can see that now. It is hard when you don't understand, and don't know what to say. I beg you to ask me any questions you may have, and I will do my best not to be harsh or expect you to know what the best words are to say, as long as you can try to see that while I would never change Emersyn and her extra chromosome-it does not mean that a lifetime of specialist appointments, increased health risks, and being worried about what happens to her after I am gone, is not extremely hard on this momma. It can get lonely having to be so passionate all the time. I don't by any means think I am a perfect mom, and trust me, anytime I have the chance to make myself feel guilty about not being enough for my kids- I am taking it. Even when I know I am wrong for doing it.
When I am feeling my lowest and most concerned if I am making the right choices for her-
I imagine Jesus weeping in the garden. Having to make these WORLD changing decisions. While everyone around him thought he was absolutely crazy-he knew it was right. While even his followers weren't supporting him-he had the ability to forgive them. He had the ability to love them so much, he still gave his life for them. Sheesh-thats some perspective for you right? This thought process doesn't make me feel better but it makes me feel a little less alone and little more confident in my decisions.
I hate being this negative person. HATE IT. If you know me, and I mean ME:the me before motherhood. You would know I am silly, I love to dance and sing and make jokes. I want to eat all the foods. I want to learn about other people. I want to go to parties. I want to celebrate people. I want to celebrate people's kids. I want to drink wine with girlfriends and talk about nothing but bad TV, and what wine is our favorite. I want to be a 30 year old woman, wife, and mom. But now I have painted this image of myself that I am incapable of these things to others. But I am!
If you are thinking, why did her husband tell her these things, its because I asked him to. Why babe? Why are people afraid of me? Why don't I get invited? Why do they message me with their darkest problems on their darkest days-but not invite me to celebrate in the happy days?
For those of you who have stayed in touch with me throughout this journey-Thank you. For those of you who have genuinely asked me how I am doing and what is going on and listened when I whined and wined-Thank you. I know it isn't easy. I hope I can pay you back one day. I hope I have my crap so together my love tank can just make it rain on you constantly. That is my goal. That one day-I will be the one going around supporting everyone else, and I will be the one on the hunt for more people to help. Right now, at this point in my journey-I am doing the best that I can to support my family and just keep myself strong enough for tomorrow. If you see me out, and I look like I have all my shit together-I really don't. I really have a thousand things going through my mind on how I should have done this or need to do that.
If you could, I would love all the prayers you can muster.
For me to have the strength and confidence in my choices.
For my husband to continue to see the light that shines in me, even if it is dim, that he loves so much.
For Emersyn to get all that she deserves.
For Luca to always know, that even though it seems like I put so much more work and worry into Emersyn's life: I feel equally as passionate about his life's outcome.
For my friends to know, even when I disappear into my hole, that I love them and want to be there.
For my family to know, that I am sorry it is so heavy right now but I am so thankful for all the support, even when it seems like I'm not.
That tomorrow when we go have Emersyn's sedated hearing test-that we get good results and I can just close this chapter of worrying about hearing loss. And should we get bad results, that we have the ability to have a solution.
I believe Emersyn has huge things in her future. You know what else? I believe I do too. Everyone is a work in progress.
I am so afraid to share this, but I'm going to. I guess this is my Down syndrome awareness month post.
If this post is sporadic and all over the place, all I can say is, welcome to my brain! Hope you can make sense of the madness.
Sending Love to all of our followers. All of the eyes reading this. I so want you to know-I appreciate you.
