Saturday, August 15, 2009

All I have to do is look at him

As I think about what encourages me, I first have to think about what discourages me. I don't know if it's because I tend to be a glass-half-empty kind of person (thanks, Dad) or if it's just by nature of defining the word. Either way, what discourages me has definitely changed over the past several years.

In high school, it was discouraging to get bad grades. I was an A student, and academic excellence is what I strived for. So in order to be encouraged, I would study hard and make good grades.

In college, it was discouraging to not have a certain boy interested in me. I was finally interested in a social life, and it was awfully disheartening to realize it was a lot more difficult than it looked on Beverly Hills, 90210. And a lot more painful. So it was encouraging when God finally sent me the man of my dreams.

When I was a teacher, it was discouraging when students didn't or couldn't grasp the concepts I was trying to teach. Or when the students were disruptive. Thus, a bright, well-behaved class (you know who you are...) was a wonderful encouragement to me.

Being newly married, it was discouraging when Matthew and I would have small spats, so making up and trying to see the other's point of view was always encouraging.

Being a new mom, it was extremely discouraging when Andrew would not breastfeed well. Sadly, the only encouragement offered with this one was the hope that the next baby would take to it well. (And he did, thank God!)

And then Benjamin was born.

And discouragement took on a whole new meaning.

Because being discouraged about weight gain or finances or a messy house or even a spat with my husband seemed really petty things to be discouraged about.

I had a son with Down syndrome.

He would always have Down syndrome.

No matter how much I tried to wish it away or solve the problem, there was nothing I could do about it.

He had heart defects, an intestinal blockage, and aspiration in his lungs. Thankfully, the first two of those have been fixed, and the third one is continuously being monitored.

But he still has Down syndrome.

Sometimes the words still haunt me. I know many of you other moms can relate. Some days, even months and months later, all I hear in my head are "downsyndromedownsyndromedownsyndrome."

And so what is discouraging for me now is the thought of the future. And what it holds. And what he will become. And what I will become. And what we will become.

I see adults with Down syndrome, and sometimes I have to take a deep breath. Because part of me just hasn't come to grips with the fact that that will be my son. That is my son.

And I think about the Orange Grove Center here in Chattanooga, a non-profit organization that employs adults with disabilities. Part of me wants to scream out, "I don't want this!!!!"

I wonder if Matthew and I will ever be able to travel like we had planned after the kids are grown. You know, because he'll never truly be "grown."

I wonder if he'll graduate from high school, get a job, live independently, get married....

And it breaks my heart that I even have to wonder. Because those are just things that adults do. No one wonders if their children will do those things.

But we do.

Let's back up.

Adulthood might be too far.

Let's think about elementary school.

In a way, that is scarier than adulthood. Because I've been there more recently (as a teacher), and I know how cruel and heartless kids can be. I wonder not only how it will affect Benjamin but also Andrew and our other child(ren).

(((deep sigh)))

I just want to say before I continue that I *know* a lot of this is normal to worry about, and that *all* parents worry about their kids' futures. And it's not like I *always* worry about it, and I definitely pray about this and seek reassurance from God about these concerns.

And let me tell you how God calms me.

How He reassures me.

How He lets me know that He is in control.

That He gave me Benjamin on purpose.

That this is all a part of His master plan.

Better yet, let me just show you:

I am not kidding you when I say that I cannot look at this boy or hold him or smell his sweet skin and worry one bit.

You know that adult with Down syndrome? He is someone's Baby B, as we affectionately call Benjamin. And when my Baby B is the adult, he will still be my Baby B.

All I have to do is look at him.


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Stephanie said...

sweet, perfect baby B brings joy to ALL OF US.
Thank you for letting us understand the reality of having a Down Syndrome baby. It has totally changed the way I feel and act when I see a family with a DS child.
How fun is it to think about our new heavenly bodies!! We are out of here, Benjamin. Me and you... picking up our new bodies!!!
Until then, keep bringing BEAUTY to this world. You and your mommy.

paula said...

Two days before our Baby B was born, I was talking to Debbie Norris, who has a son who will always be with her, about how I admired the courage and strength God gives her to handle the many problems she faces, and then WE became the family of a special need's child. Never thought that would happen in a million! He couldn't be loved more than he is. As your mother, I hate you won't see him actually mature enough to leave you but all of that must be over rated, in light of eternity. God loves you more and better than I could. His plan is richer while mine is selfish. I do admire your strength and love you dearly. Mom

JILL said...

I love that last photo. Benjamin is adorable, but what draws me to it is how your love cannot be controlled. It blasts out of that picture!
I only "met" you after B was born, but it is very obvious that although Benjamin may never be "grown" as you say, his mother has grown in many ways since his birth. A perfect pair.

Jon and Katie said...

Your post encouraged me! I think you are a beyond awesome mommy! Thats why God gave you B! He needs a beyond awesome mommy!!

The Wood Family said...

What a beautiful post. Thanks for sharing your hurts, fears, disappointments, and discouragements in such a transparent manner.

One thing is for sure, that Benjamin is one sweet, smiling, fellow!

Anonymous said...

Perfect Angela. Thank you. And I love the photos of sweet Benjamin.



randifaypayton said...

Angela, He is a beautiful baby, truly! My best friend growing up had an older adult brother that had DS and she used to "babysit" him when we were in Jr High. His name was Shawn. He grew on my heart like no other soul and I used to wish when I grew up that I would have a DS child! There was a sweetness, a simplicity-and I don't mean mentally, but a simple...simply sweet spirit about which one can't help but fall in love. You are a very blessed woman! I love following along your journey and thank you for sharing all the aspects of it. Your faith blesses me. Godspeed~

Diana said...

I couldn't walk an inch much less a mile in your shoes. I could never have your courage, stamina, and overall strength. I love you and your entire precious family. Benjamin will always be special to me. There is innocence and love in his eyes I will always cherish. I look forward to being your friend and holding your hand and supporting you in this journey called life.

Christia said...

Angela I want to thank you. You have a wonderful way with words, and you let us into your life. You are an amazing mother and friend. I love Baby B so much too. We are all blessed by both him, and you. You especially for sharing your sweet baby with us.

Adrienne said...

I have those same feelings too! Lovely post! B is adorable!

The Moses Family said...

I think those are perfectly normal things/fears to worry about at times. And I think the best way to deal with them is to do just that-deal with them, talk about them-which is what you are already doing! Life is one big journey of changing and growing and learning, and we all have our different battles we face. Benjamin is lucky to have you as his Mommy!

AngieW said...

You touched on the worries and fears that many parents of children with special needs have. But when I hold my beautiful Ben in my arms, all those worries go out the window. Our children truely have amazing power.

Anonymous said...

Angela. This is your Dad. What do you mean, "glass is half full ... thanks Dad". You KNOW I'm not that kind of person. The problem is not a "half full" or "half empty" situation. The fact is ... the glass was too big! Ha. You know I love you.

Ryan said...

Wow. I don't have many words - just a lot of emotion from that post (the music doesn't help either..). I love you and your family. I do pray for you and you encourage/challenge me. Thank you.

Mary Jo said...

There are so many unknowns already in life and it is especially challenging having a child with down syndrome and all that comes with that. As a fellow planner/ organizer I'd imagine all the uncharted territory and unknowns that come with Benjamin makes it especially hard. As you know God will give you the strength and support you need, but that doesn't mean it will always be easy.
Thanks so much for sharing in your journey so richly and honestly. HUGS - MJ

Natasha said...

That sweet grin brightens my day all the way out in California. Baby B has touched my heart forever, and isn't that one of the the greatest gifts anyone can ever give? Thank you for sharing him with us.

Kellye, Chad, Hayden, and Sebastian said...

Can I just say...I'm on Lexapro and haven't been able to cry since I've been on it. I didn't think I had it in me. But right now, I do and I'm sobbing. What a beautiful, beautiful post Angela! You are so incredibly blessed!!!!

amy said...

hi there. just found your site and have been having fun looking around.
we have a benjamin too, who also has DS. and he's our families love light! thanks for sharing your stories...i'll be back! :)