Sunday, March 21, 2010

3-21

Today is World Down Syndrome Day.

Some of you may have noticed that I am not very political on my blog.

Or on Facebook.

Or just in my life in general.

When I first found out about Benjamin, about an hour after his birth, one of my first thoughts was, "Oh, no. I'm going to have to become one of those moms." The bumper sticker advocate. The in-your-face proponent.

And as the months went by, and I fell oh-so in love with my little guy, I started meeting many, many moms (and a few dads) who also have a child with Down syndrome.

And I learned that those moms are moms just like I am. Loving their children. Wanting what's best for them. Trying to make sense of cruelty toward innocence.

But me?

I'm just not there yet. It may be that Benjamin is still so young. We haven't had the chance to be out in public that much. He doesn't have many of the physical characteristics (that he most likely will grow into) that cause others to mock.

It's not that I'm ashamed.

It's not that I'm in denial.

I'm just not there.

My life right now is about us.

Our worries. Our schedules. Our medical issues. Our books to read. Our tickle-and-giggle times.

I don't mind all the politics, though sometimes, with anything, it seems to be a bit of overkill. But that's just me. It doesn't offend me or bother me.

But today, March 21, is World Down Syndrome Day.

3-21 represents the third copy of the 21st chromosome or Trisomy 21. See, a typical person has two sets of all 23 chromosomes. A typical person has 46 chromosomes. The vast majority of people with DS have a third 21st chromosome in all their cells. And for some reason, the placement of that extra chromosome results in all the physical and mental delays known as Down syndrome.

And so, in honor of the 21st chromosome, I am going to make a list.

About Benjamin.

Because to me, that's what this is all about.

Some of these things are "life lessons," and others are more of a practical nature.

One of my favorite, most bittersweet pictures of Benjamin and me is this one. Taken on May 3, 2008. He was nine days old. And I was still in a world of hurt. But I am not the same person. I have learned and grown since then, and am still learning. And still growing.


21 Things I Have Learned From Benjamin

1. Life is not all about me and my comfort.

2. Heart failure does not mean the same thing as cardiac arrest.

3. It's easy to feel sorry for yourself, and sometimes that's okay.

4. Grief isn't something that you go through and then get over. It comes back in waves, but each time it comes and goes, it leaves you stronger and you learn something.

5. There are many wonderful doctors and nurses in our area who truly care about us.

6. There is a lot of trial and error with diagnosing problems. Rarely is a problem truly "fixed."

7. My worries about the future can often be diminished just by spending time with him. Smiling with him, laughing with him, soaking him in. Sometimes, all I have to do is look at him.

8. It's true what they say, he is more like us than different.

9. People mourn in different timelines.

10. Some people will never get it, and situtations like this bring out others' true natures.

11. You learn who your true friends are, and you learn how to be a better friend to others.

12. I have the most wonderful, giving, supportive, selfless mother EVER. And I would be absolutely lost without her.

13. The Internet is an excellent way to gain support, friendships, and advice. But it is also very addictive and time consuming.

14. My cats aren't all that bothered by tail pulling and tackling. Well, Frank isn't. Nancy still isn't a fan.

15. Brotherly love can be seen in a simple facial expression. (B to A)

16. So can brotherly aggravation. (A to B)

17. Mundane chores like laundry and dishes are a nice way to spend a day, especially when my boys are healthy and happy.

18. People don't always know what to say, and that's okay. I was there once. Still am at times.

19. It's not Down's Syndrome. It's just Down syndrome. You don't say, "a Down's person" or "a Down syndrome person." It's "a person with Down syndrome." It's a person first.

20. The short bus isn't funny. It's a real bus. With real kids. Like my son.

21. We are all human. We are all different. Yet we are all the same.

I love you, Benjamin Matthew. You have transformed me and countless others in your short life. No one can meet you and spend time with you and not be affected by your sweet smile and your resilient nature. I am so proud to be your mommy. You are my heart.

18 comments:

Todd and Courtney said...

He is seriously the cutest little boy! I soooo want to meet him.

Sarah said...

I have today marked on my calendar and thought of you this morning when I pulled up my week to see what was ahead. Benjamin is a magnificent boy and is so loved by so many people. I can say without a doubt that you have helped me be a better mom and appreciate my kids and their health on a whole new level. Give Baby B a squeeze from me today. xoxo

Dawn said...

What an incredible baby he is and what an incredible list! Praise the Lord for Benjamin's precious life and all that he is teaching others!

Katie J said...

That was beautiful Angela! Thanks for sharing. Your joy in Christ is always apparent! I particularly loved #'s 1, 4, 15, 17 and 21. Benjamin is a beautiful boy!

The other me said...

Angela, because I have a sister with downs I am always somehow envious of people who get to be mothers to such glorious people. Jenny is 34 now and I can never remember a time where she has been treated with anything but kindness and love. I so hope that Benjamin finds the same. I do remember people staring at Jenny and feeling anger when I was a teenager that people would look at her like 'that'..until I realised that Jenny NEVER noticed, she has always been totally unaware that she is different, oblivious to stares or whispers and soon I learned that those people staring were the ones that were disabled.
I can't say how it would feel to be the mother of such a baby, I know how it feels to have a disabled child and I understand all those emotions that come with that, feeling guilty and then being stern with yourself for placing 'blame' the endless wishing that this wasn't so, until the time when you realise that if anything were different, this glorious child wouldn't be who they were and I am totally, completely convinced that God does not make mistakes, He just sends some of us to be tested and others, well they are sent to test the compassion and love of others. In our church, people with Downs syndrome do not need to be baptised because they are deemed already perfect and incapable of sinning. Can it be more clear that this is not a punishment, this is a way to send His most glorious and faithful spirits here to teach the rest of us how we should be?
What an honour it is to be the Mother of Benjamin and all children like him, what a day to put on your crown and know that you have been chosen from the cream of the crop and been given one of the greatest of his children to raise. Happy Downs Syndrome day.

Lisa said...

Once again, you have me in tears. I admire you so much. I love your candor and your down-to-earth way of looking at the world. You are one of the most honest people I know.

HomeSpun Threads said...

I love 17 and 18. I struggle with chores and wanting to do them but it made me smile to read your perspective. I also didn't know what to say when your mom told me about B but all I could say is that he's got a strong momma and God knows what he's doing and that baby would be a blessing. She said, "Yes but it is devastating." I am sorry, I know it's been hard having a baby that not only has DS but has been sick a great deal but I have watched you get stronger and stronger and I admire everything about you, especially as a mom. :)

Ashley Guinn said...

So, as I read this, I was literally brought to tears. What a real, and honest, blog! I am so proud of you and the way you express your thoughts and fears and feelings about little buddy! My brother Brady is autistic. And he is high functioning. So it's not comparable! But, I love what you wrote, because I can relate a little! Great post!

JILL said...

Thank you for letting us in! I learn and grow and laugh (or cry) each time you open your heart!

Thank you!

Astrid said...

I love this post. Benjamin is so precious. I love him and I don't really even know him. You guys should come over some time.

Natasha said...

What a wonderful post and an even more wonderful boy. I care for him and your family all the way across the country :) I'm so glad you share his smile with us!

Tricia said...

What a beautiful list! Thank you for sharing.

Fredericks Family said...

Beautiful post Angela.. I love your honesty. You're amazing!! XO

Laura said...

Loved this post!
I too am not "there' yet and my daughter is 3! Maybe I'll NEVER be one of those moms.

I like that picture of you and B when he was 9 days old. I'll never forget when my daughter was 9 days old - It was the day we found out about her heart problems. Wow! Life-changing...again.

I had to smile at #2. I remember hearing that term and then learning what it meant...and then explaining it to family...

#8 is SO TRUE. :)

And so is #13!

Sara said...

Really, it isn't Down's Syndrome? Hm, learn something new everyday. :)

I don't see you ever being one of those moms, but you may surprise me and yourself. I have a feeling that you will never go there because Benjamin will always be loved and cherished by many.

valerie said...

Angela, you have brought tears to my eyes! i love your honesty and how you can open up and say that youa re still working on acceptance. That at times is hard. I will have you and Benjamin in my prayers..may God give you all the strength in the world to pull through tough times. Benjamin is a blessing, a little angel from God and you are sooooo lucky to be his mom. Embrace every moment because he will teach you what no one else can....Unconditional love!!!!

Joyce said...

I love little Benjamin. He really has the sweetest smile - I love the way his eyes crinkle when he smiles.

Monica Crumley said...

What a beautiful reflection on how Benjamin has changed you. What a sweet photo, too.