Sunday, March 21, 2010
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.
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.
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.