holiday

The holidays are so much fun yet so stressful at the same time. The kids love all the traditions - getting the tree, decorating it, seeing Santa and driving around looking at Christmas lights. They all really love to give gifts. My buddy's favorite time of the year is when he walks all around school handing out his holiday thank you cards and gifts.



The stress of the holidays is not to be denied. For my buddy, the most stressful thing is the big family holiday party. I try and talk about the good and the bad parts of raising a child with special needs with extra stress on the good. I don't like admitting there are things that my buddy just can't handle but big gatherings are so hard for him.




This year, despite the hurt feelings it will cause, we decided to do what is best for our family and skip the big party. My job is to make sure my family is safe and happy. Even big sis ends up with a tummy ache every time we go to a big gathering... the curse of an introvert. I wish things could be different. Usually it's just our immediate family that has to live our life based on what my buddy can handle. It's hard as a mom who is desperately trying to change how the world sees my son, to have to spell out his shortcomings and ask point blank to have his needs taken into consideration.



This year we start new traditions and selfishly do what makes our family happy. This is our one life and we are choosing us.

look

I've often said how grateful I am that my buddy has a disability that is right there in his DNA. We don't have to prove anything in order to get the services he needs and people can look at him and not expect him to be like every other kid.




It makes some things easier - like when a couple of kids build a huge tower out of foam blocks and my buddy body slams it before I can stop him - the dad isn't mad. Of course my buddy has to apologize and see if they want help fixing what he ruined. The kids are still pissed but the dad can see my buddy's disability all over his face and I am relieved not to have him be angry with me.

Or when my buddy goes right up to the two skateboarding dudes and stands right between them. They can't understand anything he says, but they are so patient with him.





It also makes some things harder. The lower expectations make it harder to live up to your potential. I want my buddy to be a shining example of what a child with Down syndrome can be when we are out. I want people to see how funny he is and how loved. My buddy is rarely at his best in public. More often than not, he is growling at me or shouting 'NO'.



Then I get 'the look'. Man how I hate that look. Sometimes it's pity. Other times relief that he's not their kid. It's the one time I am grateful I can't read people's minds. I know I can't make everyone fall in love with my buddy and I can't single handedly change how everyone perceives people with Down syndrome. I just hope that somewhere along the way, my buddy can win over a heart or two.

Halloween

Sometimes after my buddy has a birthday, I get caught up in the cycle of all the things I thought he would be doing at this age. Like how my 8 year old is still mostly unintelligible to strangers. Or how he still pulls his CPAP mask off 4 times a night forcing me to wake up and put it back on him so neither of us is sleeping through the night. And nothing gets me more depressed than every single time I change his pull-up. I also flash back to all the time he spent in the hospital when he was born.



Halloween always seems to turn things around. For one, that is the day he came home from the hospital. Plus Halloween is fun! This year, I celebrate the positive milestones. For the first time ever, my buddy told me what he wanted his costume to be and had an opinion when we picked it out. He also anticipated the big night - asking to put on his costume, or go in the car, or simply say, "Halloween please?" He LOVED trick or treating. My buddy was perfectly age appropriate - trick or treating like a pro. He always just took one candy and said Thank You every time. He wasn't scared of the decorations or costumes. He seriously loved the entire evening.





My buddy is also having a good school year. He is maturing and they are reaping the rewards at school... not that he is perfectly behaved or anything. One thing that I've seen this year that has never happened before is work has come home marked with '100% independent'. This is a HUGE milestone. My buddy is listening to instructions, focusing on what his task is, following the directions and actually doing all the work - reading the question and circling the right answer. I don't care what level the work is. He is actually doing it. I couldn't be more proud of him.




My last story really shows his maturation. The kids love to use my keys to unlock the door when we come home. One day after school, I was the last one into the mudroom and I heard my buddy ask for the keys so I handed them to him. Rara started crying saying how she asked first. I told her I was sorry and I didn't hear her. She still cried. Normally at this time my buddy would shout at rara and say, "No crying!! Go to your room!!" But this day, he walked over to her, handed her the keys and said, "OK rara?" I almost fell over in shock. It was the single kindest selfless act I've ever seen him do. I praised him so much and gave him ALL the attention.

I think 8 is going to be a good year.

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.

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.

lower the bar

Shortly after my buddy was born, I stopped all the parenting magazines. I just couldn't take the pressure to be a perfect parent when my child would never measure up to their idea of perfection. Once in a while, I'll be in a waiting room and I will flip through one. I can't help but feel like they make parenting so much harder then it has to be.

'Turn your afternoon walk into a nature scavenger hunt!' For me, just surviving a walk outside with the kids feels like I should be awarded a gold medal. Let's lower the bar a bit. No food that looks like amazing works of art. More than one food group on the plate? You just won at parenting in my book.





If creating elaborate crafts makes you happy, then by all means craft away. I refuse to feel guilty shoving some broken crayons and scraps of paper at the kids and calling it a day. I say we should all ditch the Mommy Guilt.

Go out there and be the best you that you can at that moment. Maybe you are having a kick ass take no names kind of a day. Yay for you! Maybe it's more of a hide under the covers day. Own it. Give yourself a break.




I was starting to worry that I did not do a single thing with my buddy this break that will help him transition back to school. I will not fall down that rabbit hole. It was a break for us all. No guilt involved. We laughed and made memories. (and fine ... we played a lot of iPad games)




Please, join me in lowering the bar and getting real about this parenting stuff. It's not a competition. So open that closet that is a huge disaster. Grab a cup of tea (or a glass of wine) and watch the kids fall in love with every piece of junk in there. Entertainment with minimal effort!

Oh and for the love of peaches, don't dress your kids if you don't have to. Just let them throw a dress-up dress over their jammies and marvel at their creativity.

joy

Turning 40 brought me a surprising dose of clarity and confidence. I lived a good part of my life feeling insecure, not wanting to stand out and being worried what others thought of me. I wore the clothes I thought I should and kept opinions to myself. I was making choices based on what I thought I should choose and had no idea I was doing it.

Then I heard this organizational guru talk about how you should surround yourself with things that bring you joy. For example, you pile all of your clothes on the floor then one by one, you touch each piece and ask yourself if it brings you joy. Plain and simple, if it brings you joy then keep it.

I realized that none of my shirts brought me joy. I wore them but hated the way they felt on my body. So I bought the shirts I really wanted - ones that felt good to put on and left me feeling confident. I feel like this little change has seeped into all parts of my life.

I'm a big fan of a daily phone conversation with my BFF just complaining and getting it all out. But I think there is a fine line of getting it out and laughing over it (because laughing brings joy) versus focusing on the suckiness and giving it power. The times in my life where I threw pity parties for myself were times I wasn't happy.

Photography has brought me such incredible joy. In the past I tried sketching, crafting and painting. I could do them all, but they left me stressed and produced no joy. For years I had no creative outlet. Finding one little thing that I can do just for me has made such a powerful impact. I don't have the luxury of a lot of time without little ones to look after, so finding something that includes them has been perfect.

Plus being able to look back at their little faces - joy to the thousandth degree.

Of course I believe in moderation and sometimes life just sucks. There are times when you just need to hide and wait for it to pass. I believe that if you focus on the joy in your life and actively search out things that make you happy, it can only help.

Here are a few moments that bring joy to me. May you find something today that brings you joy.

school

A new school year has started. Just like with everything else in life, I totally misjudged how the change would affect each child.

My buddy worked so hard all summer - between home school and summer school that he has had his best transition yet. Sure, there's been some testing of new people in his life. I had to send in the book I made so the teacher could read it to his classmates. It talks about my buddy and Down syndrome and why he is the way he is. I guess he knocked down some block towers that the kids were building and they were understandably upset.





Big sis, however, spent many nights in tears. Her teacher last year had a personality that really meshed with big sis plus her two BFFs were in that class. This year is really different. Big sis is slow to warm up and has been keeping it together at school then completely losing it at home. It's been really hard on all of us. Hard enough that I took a book out of the library about highly sensitive children.

I volunteered to be room mom (which big sis loves) and now I'm the official class photographer (which I love). My first official business was a head shot of all the kids. They all look a little like this:





I know that big sis will adjust soon enough, it's just so hard to see your kids upset.

Rara, on the other hand, LOVES school and wishes she could go more than twice a week. She is equally happy at home with just me and some peace and quiet. The fighting this summer was so out of control, I think everyone is happy to have a little space. Watching rara so excited when she gets to be a big kid then just running into school is the best. (And yay for a teenie bit of me time)

hello again

I unintentionally stopped writing this summer. It was a bit of a challenging summer with an insane amount of fighting between all the kids. I home schooled my buddy almost every day. We made attempt number two at potty training and are back in pull-ups - so that's how that went. There was a week of summer camp and then summer school. Every day seemed so long, but it all went by relatively quickly.

Here are a few of the highlights of summer and hopefully I will be back to writing soon.


tushies in bathing suits




sun dresses (and the Special Olympics medal she wears all the time)



rock throwing



inflatable pool in the backyard



mismatched outfits and favorite dolls



adventures with the whole family




convincing the hubby to take some pictures together (even if I don't love any of them)

no glasses!!!!! (the highlight of the summer for sure)



rare photo of her smiling (and not scowling at me)