Wednesday, October 8, 2008

The Bubble

How can I even tell you what I've done, and why? It is so complex. I still have twirling fluttery feelings inside of me that border on raging out of control either toward me throwing something across the room to shatter before me and cut my flesh.....or just falling on my knees in tears. And the thing is...... it probably isn't even a big deal.

You might not understand, and that's okay, whoever you are. I don't even know who most of my readers are. I don't know.

I have created somewhat of a bubble in my home for Shawn. In our home he is not different. He is not retarded. He is not significantly special. He and Asher are treated the same, with the same expectations that they will obey, that they will learn good manners, that they will share and play fairly. I've carried this bubble over into their school....after all it is a school with a blended environment to include kids with Down syndrome, Autism, CP, MS, whatever...... It's a happy place where learning takes place and equality is practiced. It is perfect.

What I haven't really realized is that I'm in my own bubble. My head is in this world that believes Shawn will be loved and accepted everywhere he goes.....not just today as a toddler but in a few years as a tween and then later as an adult. Am I freaking nuts????? Those who see him today and think he is the most precious baby ever are probably not going to choose to sit beside him at the movie theater when he is 20. These same people who are so impressed with his abilities today are probably likely to be uncomfortable having dinner with him in the next few years when he might possibly have food hanging off of his chin and staining his clothes. He is cute now when he has a poopy diaper, but what about that accident that will happen to him in the 6th grade because he gets flustered around a pretty girl? What then? ARE THEY STILL GOING TO LOVE HIM?

Yesterday I was just innocently catching up on blogs and enjoying my reading time.....going through funny comments left on other blogs, etc. I happened across a comment left on another blog by a woman I have never seen before, whose blog I have never read........ and I allowed myself to be hurt and offended by a comment that she never dreamed would insult anyone. It was actually a funny story......until she suggested her son looked like he was "mentally challenged" or had "special needs".....and made some comment about smelling like urine and dressed in rags. I was beside myself with hurt. Not at what she said.....but at the realization that outside of our comfy bubble, people might actually think that about my son. My sweet child. So, I left her a comment. It wasn't mean or stabbing.....but it was a comment that I didn't need to make. I knew better. I read so much of her blog and saw nothing but a beautiful, tender, precious and loving woman of God who shares her life with others to serve God. She is really beautiful. Why did I feel like I needed to school her? I cannot imagine.....but that I am battling with pride. She quickly commented me with love and I think I've wiped up my mess.....but today I am just so sorry. I am literally sobbing in grief. (and this is why I want to throw things......lest you think I am aiming for her, I am not!)

Let me tell you what a mother of a special needs child has to endure some times.....and I'm barely 2 years into this...... mine is still sweet and cute and un-threatening to most......and I know it is going to change. I know it will......but here is the beginning.

1. At one point on Myspace there was a page dedicated to making fun of the hair of people with Down syndrome....that they all have the same bad haircut, and stick straight hair.
2. I get to read funny email jokes about someone not even being good enough to compete in the special olympics.
3. I receive emails about not wanting a retard (the next president) to run the country.
4. I will have to fight for my child to get a fair shot at education and not stuck in the retard room at the end of the hall on the furthest wing of the school.
5. I can't even get people to stop using the word "retard". This word makes me insane!
6. Someone once told me the opposite of smart is retarded. NO....the opposite of smart is dumb, or stupid, or not-so-smart, or un-wise. My mentally challenged child is actually very smart. But he is mentally challenged.
7. Other children in their discomfort and insecurities are going to be mean to my son, or they will be afraid of him.
8. I get to worry about his health, his upcoming open heart surgery, his thyroid, and pray pray pray pray so hard that he does not get Leukemia.
9. One day I was trying to enjoy a sweet article on the online newspaper about a couple, both with Down syndrome, who had just gotten married. It was an open forum for people to leave comments. There were about 30 comments at the time and most of them were such a low level of cruelty that I wanted to pack up my kids, move to the hills, and hide.

I have always been one to take a stand. I've opened up my mouth many times that I probably shouldn't have and I've caused some problems in the past. I don't want to hurt anyone. I didn't want to hurt that very sweet lady. This is my sensitive spot, I suppose.

I am not sure this post serves any purpose. My head hurts now and my eyes will be puffy the rest of the day. I am deeply in love with my children! I wouldn't change Shawn for anything....not even for him, because I think he is better off who he is. I am strong and have some braveity about me......but I am also afraid and I'm sure I'll be wounded many times over as a witness to the things in this life that hurt him. I am hurtable. I have Jesus and He is my fortress, and I'm just not afraid to admit that I need His covering of protection and His spirit to guide my heart. I know where He wants me.....and it is outside of the bubble.....where I am not allowed to get comfortable.


DEb said...

SISTER!!!! This broke my heart!! I have a very dear friend whose baby was born w/DS. She did not accept it well - later on the years (as several have passed and this beautiful little girl is now 11 or maybe 12 by now) mama has grown to take her little one out of the "bubble" (she, too, had one) and is a FANTASTIC mom and so is her daughter!! I will always love Shawn. People who love God will ALWAYS love Shawn - people who don't...well, we just have to continue to pray. But regardless, God WILL take care of Shawn even when he's 60!! You're a FABULOUS MAMA!! Don't ever forget that!

Sarah said...

Well, Melissa, I honestly believe you DID need to comment, and I'm glad you did. Yes, it hurt, but I learned so much from it. I am so easily hurt by others, and it pains me to realize how I also have the power to hurt people with my words.

I believe God wanted you to share your feelings with me, and if it had been someone else who did, they might not have been so kind.

I am very touched to read about your experiences with your children, and I look forward to reading more about Shawn.

Sarah said...

Another thing... I also want to shelter my kids. I can't bear the thought of my 2-year-old starting school and having other girls be mean to her (which I hear starts in 2nd or 3rd grade)

I wish I could protect them always, and I only hope that I can live my faith in front of them and help them avoid some of the insecurities I've been enslaved to.

Melissa Irwin said...

@ Sarah, I love you for being here. :)

And as for sheltering....even though I shared my weaknesses in this post, I believe fully in the truth that if our kids are loved and nurtured at home, they will not be as tender on the playground. They need the love of Jesus first, then mommy and daddy.... there is much comfort in this alone.

datri said...

I think between the Tropic Thunder stuff and the Palin stuff, it's really opened my eyes to the HATE some people have for our kids and it's disgusting. I know I can't hide, as much as I want to. So I take the opposite approach and make sure my child is out and about in the community. I can't change some idiot in cyberspace or some ignorant kids in the mall, but I can change attitudes in our neighbors and community, one person at a time.

Anonymous said...

obviously i don't walk in your shoes, melissa... but i totally agree with you and as a mother "feel your pain" so to speak. I don't see your "bubble" as a bad thing, but rather an environment that has allowed shawn to thrive.

thanks for your authenticity about what your present and future look like, they give us all something to think about!

Melissa said...

I'm teary reading this. In some small way I feel like I can relate a little---I often hear other teachers talk about "those kids" or "don't they drive you nuts" or "they can't be coddled all the time" or something equally as disturbing.

Today I attended at Autism conference here in town with a mix of parents, teachers, and other professionals in the community. I am attending with the mom of one of my students. The glimpse into her life makes me appreciate her strength and determination to help her son be the best person he can be---and we dont' yet know what that will look like---but we're hopeful.

I appreciate that about you as well. And I want you to know that reading about you and your boy is making me a better teacher too.