unknown

When my buddy was first born, I joined facebook and read every blog I could find because I wanted to know what life would really be like. I didn't know much about Down syndrome and I didn't actually know any people who had Ds. I was scared of the unknown. I learned about the medical side of things from pamphlets and doctors. I craved to hear what moms had to say. I couldn't imagine this life and I just wanted to know what to expect.



There were two bits of information that I learned that I had never considered and I harped on in my mind. One was about potty training and the other was about speech. When I first stumbled across information that some 5 year olds weren't potty trained and wore diapers to kindergarten... it rocked my world. I have no idea why this hit me so hard. Then I heard about kids who were nonverbal. This word wasn't even part of my vocabulary. I remember whispering into my buddy's baby ear, "please just talk some day."





Fast forward 7 years and I have a son who is not potty trained and is mostly nonverbal. And you know what? It's not a big deal at all. The potty training business is just part of life and I only notice it when I have to change his nervous poop standing up in the dentist's tiny bathroom or have to cancel the afternoon at the pool because he's had some loose poops and I don't want to be responsible for the 'code brown'.




While my buddy can name objects, say hello to friends, ask for food and get his basic point across he is very hard to understand and often can't answer simple questions. He can't tell me how his day was. He can't tell me if someone was nice to him or mean to him. He can't tell me his favorite anything. Even with all those verbal limitations, my buddy is hysterical. No one makes his sisters laugh more than him. And when he does say something unexpected, it's that much sweeter.





I don't know why I had those fears. Probably just because they were unknowns. I couldn't imagine what it would feel like or look like. While life with my buddy will never be described as easy, it is full of joy, laughter, love, acceptance and happiness... and that is worth a thousand easys.

friends

We're already 2 weeks into summer. I promised myself I would be on top of home schooling with my buddy, but I've yet to start. We've spent tons of time swimming. I have enforced the no iPad during the day rule and that has led to lots of playing together. I am amazed at how well my buddy and rara have been playing.




My buddy will say, "Rara play?" She always responds, "Yes. But you have to remember that I am little and you need to be gentle with me." It's super cute. Rara has gotten a little better at getting out of his way when he starts to get upset, but she's still stands her ground often... and often ends up getting hurt.





It warms my heart to watch them becoming friends. It took 4 years, but they're starting to build a solid relationship. They make each other laugh. I can let them play alone in his room without fear. I wasn't sure this day would ever come. I am enjoying it as much as they are.

four

Tomorrow little rara turns 4. She is something else, that girl. She is brave and funny yet sensitive. The first time she meets you, she will act shy. The second time she meets you, she will climb onto your lap or ask you to pick her up because she assumes anyone that knows her even a little wants to hold her. She will hug and kiss everyone. She makes friends wherever she goes.




At least ten times a day, she will come tearing across the house calling your name with this urgency as if the house were on fire. When you ask her what she wants, she simply says, "I love you!"





When she needs comfort she will rub her hands all over your arms. She has done it since she was a baby. When I asked her why arms, she replied, "because they are soft."




She loves wearing a costume because of all the attention she gets. But her favorite character to pretend to be is Britney from Alvin and the Chipmunks. When she dresses as someone else, she will say she is Britney pretending to be Hazel.





She can play by herself but really prefers it when someone else plays with her. She never backs down - even if her brother is about to squash her. She makes just enough trouble, then turns on the charm. When she does get into trouble, she is genuinely sorry and quickly tells you so. She is sweet and caring and a great little kid.

unapologetic

I've joined a few self portrait groups in order to help my photography skills grow. Since I'm always available and willing... I've turned out to be one of my best subjects. I love looking through other posts and appreciate all the creativity and sweet shots of moms and their kids.

Unfortunately I've noticed a trend - especially in the momographers. They apologize for the fact that they are in the picture. Sometimes their body isn't what they want it to be, or their face looks funny to them or the photo isn't "perfect". They point out all their perceived flaws... leading you to notice the flaws when you wouldn't otherwise.

The women taking these photos are photographers of some sort and the shots are beautiful. They are capturing moments and their kids are going to be so grateful when they grow up to have the memories preserved.

Why as women do we feel the need to apologize just for being there? I say - put yourself in that photo. Keep it to yourself if you want or post it so everyone can see. But don't you dare say one bad thing about it. I have never once looked at a self portrait and thought, "Geez. She really should NOT ever be in a picture." Women - all shapes, sizes, colors, etc - are beautiful. Capture those memories for your kids. Don't let them think for an instant that you weren't there. Your kids will thank you.

funk

I'm in a bit of a funk, as I like to call it. I think it's a combination of too many funerals, not enough photography and writing, and the general exhaustion that comes with being a parent. I'm sure I could use more laughs with friends and less worry about my buddy's behavior in school. I don't often fall into the comparison hole, but lately it seems like everyone else has more friends, is thinner, takes better pictures, has more fun, etc. The reality is that we are all human and we are all hot messes. I know better than anyone that a picture may say 1,000 words... but they all might be misleading.

Take this one for example:




I could write something poignant about sadness but the reality is that he was all congested so his eyes were watering.

I am lucky that my funks don't ever turn into depression. Plus I have these crazy kids to entertain me and bring my spirit up.  So I will force myself to find things that I enjoy and throw myself into them. What do you do to break out of a funk?

Here's a small selection of moments that bring joy.

personality

My self portrait topic this week was Childhood Me. As I started thinking about what I was like as a child, I realized that I'm the same way as an adult. I had my dad build a little ladder and seat into a tree in our front yard. I used to sit up there with a book and watch the neighbors mill about. I still love trees and books and solitude (while being close enough to others as to not feel lonely).




I think parenthood is the perfect way to study personalities. Kids are their own distinct people. Their personality comes across at a very early age. Looking at pictures, it's so obvious to see who they are. Of course, I don't photograph the hard times - I'm in there elbow deep. And there is a lot of personal growth in the hard times but I like to focus on the every day.

Big sis was mothering before she could even walk. She shies away from the camera and takes a while to warm up to people. She is loyal and kind.




When my buddy is doing his own thing, he is in it 100%. He loves an audience and wants you to share in the fun with him. He wants to run with you, but only if he is in the lead.





Little rara has a big personality. She stands up for herself and all that she believes in (usually by shouting at her big brother and shoving him in the face). She is silly. She is sweet. She is sociable and outgoing.

that kid can't even talk

The other day we were at the park and my buddy was in the sandbox headed for a truck when another boy swooped in a grabbed it. My buddy shouted at him for a minute following him around, but then decided to walk away. As I followed my buddy, I heard the boy laugh to his friends and say, "That kid can't even talk!!"




My heart broke a little. I wanted to say something, but even days later, I don't know what the proper response would have been. We were already walking away and I know my buddy didn't hear him. Even if he did, I don't think he would have cared. I can picture him saying, "Dude. I can talk... YOU just can't understand me."

It's amazing how 2 seconds of life can sit in your gut and fester. It almost makes me forget all the kids who actually know him and like him.




Every day when I pick the kids up from school, at least a handful of kids will go out of their way to say hello to my buddy. Once kids understand who he is, they accept him and even learn to understand him.




Last week when the weather was nice, we stayed after school to play on the playground. One afternoon, when it wasn't too crowded, my buddy had two friends at the playground. They were so amazing with him. They did what he wanted them to do, being so patient when he was getting frustrated. They kept on encouraging him to play with them and never once got upset with him. He talked to them and they understood him. It was perfect.