Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, May 30, 2013

Make A Joyful Noise

Psalm 98: 4-6
4 Make a joyful noise to the Lord, all the earth;break forth into joyous sound and sing praises!5 Sing praises to the Lord with the lyre,with the lyre and the sound of melody!6 With Trumpets and the sound of the hornMake a joyful noise before the King, the Lord!

Tonight was Angela's spring choir concert. I have to tell you, these choir concerts are bitter sweet for me. I waffle from loving all she is doing, then moments later having tears streaming down my face.

Let me explain....

When I was pregnant with Angela, like all moms I had hopes and dreams. Because of the very difficult pregnancy I had many ultrasounds and knew I was having a girl. I didn't know anything else. I am not a person who enjoys shopping much, but I had this recurring dream of shoe shopping with a long-haired little girl who looked just like me. (Funny, it was always about shoes; the most difficult piece of clothing to buy for Angela.) My point is, I had these dreams of where we would be at this time of our lives, and these choir concerts are a time when it is  evident to me haven't arrived and probably never will.. There are a lot of things in life Angela will never do that all her typical peers are doing, and they're getting awarded for doing the choir concerts.

I never did a blog post about the Christmas concert and what happened to make me want to crawl under a chair in embarrasement. I'm sure most of the other 1000 parents in the audience didn't have a clue what was happening, but I did. Tonight I was prepared to avoid a repeat of the Christmas concert. I bought Angela three new pairs of shoes (two will be returned) in an attempt to find a pair that were not only cute and matched her dress, but that she could also walk in safely. I bought two dresses for her to try, hoping one would be appropriate for her. Because she is so tiny I have to buy dresses for her in the little girls department. (Stuff in the women's petites or Juniors are too broad in the shoulders/chest which cause..ummm..exposure.) I hate putting Angela in dresses. It's not socially safe for her to be in a dress. Things can happen, like when she does "the worm" on the floor.....on her a dress. Little girl dresses on my 17 year old daughter.

When we arrive at school, it hits me.

The beautiful high school girls in their stylish dresses, the fancy shoes, the hair, the make up. It's not Angela. Its just not where she is right now. The other girls, they greet one another with squeals of delight. They give Angela a half-wave on their way to greet another friend with a hug and peels of laughter.

But Angela sees her true friend coming. Another student from the special ed. program. Their pleasure in seeing one another is genuine, not forced. They are real friends.

Angela is happy.

Why do I feel like I'm going to cry?

I will not cry. I will not cry. I will not cry.

I leave Angela with the rest of the choir members and find my seat in the auditorium with one of the other parents. While we're waiting for the performances to start I look through the program and see there will be a lot of awards tonight. It's the last concert for the graduating seniors and there will be a little send off. My chest tightens at the thought of these awards being given out because I know...I know there won't be an award for Angela.

We listen to the first couple of choirs. Our school is highly competitive in the arts, music included. These are competitive choirs. They are amazing.

It's time for Angela's choir. This group of young women have more courage than any other students in that school. They LOVE to sing. They sing with everything they've got and you can pick out the voice of every single girl. Every. Single. One. This is not a competitive choir.

As the choir members move onto stage to take their places along the risers, I hear the people behind me talking. "See that tiny little girl with the white top?"

I brace myself. I swear, if there is one derogatory comment made about this choir.... God please not tonight! My friend nudges me. She heard the comment too.

I listen closer, "See her? She has Down syndrome. She's always in front and she's absolutely adorable. She LOVES to sing and has so much fun! Watch her. She's always trying to spice it up a bit."

Is that it? Is that what everyone else sees of my girl? Because in my head I think they're praying this part of the concert would hurry up and end, because it can be a bit painful to the ear. And in my head, this 'cute' stuff Angela does was 'cute' when she was 6, but is not so cute at 17! I guess its just me, because at least those around me, who don't know I'm her mother, are getting a kick out of Angela on stage.

Angela does, indeed, like to spice things up! Angela loves songs that get her moving and shaking...all over...and if they aren't singing those kinds of songs, well she doesn't really care. She'll make them that way. On this night Angela stood on the top riser, screwing up her face as she belted out HER OWN lyrics at the top of her lungs, all the while dancing away to her own rhythm. SHE was having a blast!

After all the choirs had performed the awards given out. I had to wonder...when? When will it be Angela's turn to receive an award for what she loves doing most?  Not everyone gets awards. I get that. Angela gets that. But like every other kid she HOPES that this will be her time. As her mother, I pray she gets her time. The kids who are getting awards have done great, even amazing things with their voices to earn those awards. They have dedicated countless hours to rehearsals and voice lessons. Angela spends countless hours practicing our basement...with the door closed so we can't hear her.

Before I know it, it is time to recognize the graduating Seniors. There is a slide show of "then and now"  baby pictures of those graduating. In my head I envision Angela's early baby pictures - of her with tubes and wires, laying under a glowing light in the hospital NICU. Next, all 50+ students are called onto the stage, one by one, as it's announced where they will be going next year, and what their long-term goal is. "Sally Sue Smith. She will be attending Harvard Law School and hopes to practice criminal law."

There were two kids who stood out to me. One is a young man I've seen around for several years. I can't remember what college he was planning to attend in the fall, but he wants to major in Special Education. Another young lady who wants to become and Audiologist and Speech Pathologist. I cried when I heard each of them. I couldn't help but be thankful some of these kids had been touched by "our kids". I wanted to find that young man and hug him; to tell him "Thank you!". I wanted to find his mother, to hug her and say "Thank you!" for raising such a cool young man!

My mind went other directions. In two years Angela will be graduating. She will have her named called and she will walk up on that stage, accepting a red rose from her choir director. Will they have to say "Angela Spring, She plans on singing Karaoke in her basement, and perfecting the Star Spangled Banner. She would like to be a neurosurgeon." But really, where will Angela be going when she graduates? What will she be doing for a job? While Angela's future is very bright, on this particular night it stood out to me just how uncertain things are.

Being a mom to Angela isn't always easy. Some things, like this choir concert, are such "normal" life experiences that have a way of turning on me. It's these "normal" events that point out to me just how far we are from that. And yet, it isn't about me, is it? It's about this smiling, glowing, confident young lady who stands ready to take on the world. Isn't that exactly what the goal has been all along? 


Hope Anne said...

Oh Leah . . . hugs . . . yes . . I take such pride in Katya and her accomplishments but I too feel the "sting". It's such a bitter sweet thing, life with our special kiddos . .


You rock, you know that?!

Cindy said...

Oh my gosh, the tears are streaming down my face. These emotions are all too fresh for me. Everything you've written has been my life the last few years. I laughed through my tears when I read the part about when Angela graduates and will they say, "She plans on singing karaoke in her basement..." That is Beth's life. She hasn't won the awards. She never had friends run up to her and greet her with laughter and a hug. It hurts me. It tears my heart in two. Interestingly enough though, it doesn't seem to bother Beth. She is content with her life. But occasionally, just every once in a while, Beth will tell us that she wishes she had a friend.

Stephanie said...

I know this was a hard one to write. But I'm glad you are so honest with your feelings. I think parents of younger ones just think that with all this "inclusion" we'll have all these fantastic moments. And I'm sure we will have great experiences, but we do have to face the truth that things change as kids get older.

AZ Chapman said...

Does Angla want to go to college have u heard of think they have college programs for students with Intellectual disabilities

Leticia said...

I really loved this post, I feel some of the very same emotions as I attend school events for my 11 yo Christina. No awards, but once in a while I get an unexpected 'award'. Like when her assistant said on her Christmas card that she knows God's love better because of my daughter. . .our awards 'ceremonies' are largely hidden, and in many cases, as in the neurosurgeon and Speech therapist, we may never hear how our kids taught their peers. But maybe that makes those unexpected praises more poignant.

Darlene Rodrigo said...

Hello! I have a 5-yr old daughter with Down Syndrome and can already relate to the bittersweet moments you speak about. I enjoy reading your truthfulness. It makes complete sense to me. Thank you for taking the time to write out your feelings. That is sometimes the hardest thing for me to do. The words just don't see to come out right. Anyway, I really enjoyed this blog post and just wanted to thank you for creating it. I have a blog for my daughter too.

Jeanne Zarrella said...

Loved your blog! I too, have a teen daughter with Down Syndrome who sings while on her swing set. Yes, 16 and still content to use her swing every day. And like your daughter, also trying to experience high school as any other teen, participating in as many activities as possible. Dresses and shoes, I too have shopped till I've dropped to ensure the proper fit! The word PROM sends shivers up my spine! I have sat trough concerts, just waiting for her to do something unexpected, (and she has!), yet I've watched with awe as she has matured, trying so hard to fit in. I feel so blessed to live in a town that has many activities for "our kids", which keep her occupied much of the time. And grateful to nieces and nephews, not to mention two big brothers, who adore her. And to those parents who encourage their kids to volunteer in such activities as Best Buddies, Special Olympics etc, keep up the good work....I promise our kids will teach your child all he/she needs to know in life!

Our Story: Continued said...

Loved this! Needed this post!!

Sara P. said...

De-lurking to say this was a beautifully-written post. Love your blog, your kids, your heart,
Sara P.