January 30, 2015


I was never one who enjoyed the anticipation of a big event. It leaves me feeling stressed. I much prefer the day after the big event when we just go back to living our lives. No pressure. No big expectations.

Life with my buddy has a lot more anticipation than I ever expected. There's all the 'when will he' questions. When will he walk, talk, potty train, etc? So many milestones that we measure our children against. It takes some kids longer to reach these milestones so the anticipation just builds as does the pressure.

There are countless little things to anticipate daily - you never know if it's going to be a good or a bad day. Will the school call today? Will my buddy do what he needs to or will we have to battle? How long can he play with his sisters before someone is in tears?

I've never once concerned myself with what the girls' long tern future looks like. I'm not worried about college or moving out or getting a job. For some reason with my buddy, I often find myself wondering what his future will be. Will he live with us? Will he be able to cook his own meals? What about a job or relationships? What if I should be doing something more for him now that might be able to really impact his long term future? There are moments where the anticipation feels like it is suffocating me.

Those are the times when I need to step back and watch him smile and know that no matter how it all turns out, I am doing the best I can... and that is all that can be expected of me.

January 23, 2015

he wins

It's a good thing I'm not a competitive person because my buddy wins. Even when you think you've won, really you haven't. For example, I've been wanting for years to get my buddy to drink water instead of milk. I toy with the idea of going cold turkey on him and suffering the days of pain and misery until he gives in. The other day, I sent him to school with water in his cup for snack time. When I picked him up, they said he didn't eat any of his snack and barely any lunch. All he wanted to do at lunch was drink (the cup of milk). I was so worried that he was coming down with something. Then at dinner he ate a 12 course meal lasting 90 minutes. It was a hunger strike protesting the water in a cup that clearly should have held milk.

Point: my buddy

There are times when you just want my buddy to do what you ask of him but he has decided that he doesn't care to. The natural instinct is to push him and insist that you "listen to me young man" because "I'm the mom and I said so" or maybe "we are running late and this needs to get done". As hard as I push, he pushes back twice as hard. He becomes agitated you become angry. Eventually you can get the outcome that you were looking for, but it comes at such a high price. Winning that feels like losing.

I falsely think I've won the battle of the CPAP machine. But the reality is that my buddy still has a leg up on me because 3-5 times a night he pulls the mask off - waking me up so I head into his room to put it back on him. He gets to see me several times a night and I get to be exhausted. Barely winning. Although his nightly ritual of running into his bed, pulling the covers up and snoring loudly is hysterical. I can imagine him teasing me with a sing-songy, "I'm sleeping. You can't possibly put my mask on when I am asleep." The mask is fun to play with in the daytime when you are supposed to be getting dressed.

My buddy is in a good place now. We've had success on the potty, no struggles with the morning routine and he's had a great week at school. All these things feel like winning, but it's just because my buddy was ready to have some good days. As every special needs mom knows, when things are smooth sailing, it's time to add some bumps to the road. (I may have mixed my metaphors.) Time to push the bar higher - just by little bits. Have him read 3 books instead of 2. Add another potty time to the day. Slip in the fluoride at the end of the day. Push him to clean up more. It's a careful balancing act to keep the harmony without letting him get lazy. I feel like it's important to always expect more yet be on the lookout that you've asked too much.

He even asked to paint one day when he normally would have asked to play the iPad. Now that really feels like winning.

January 20, 2015

good but icy

We are in this upward swing right now which always makes me nervous. I'm afraid I'll go soft so when it all hits the fan, I won't be prepared. (and it always hits the fan eventually)

My buddy is in a good groove at home. I had a productive conversation with one of his teachers at school. He went to a friend's birthday party over the weekend and actually made it through the entire party with no major incidents. We've had some success using the potty. I'm sure my definition of good and easy are perhaps very different from yours, but where my buddy is concerned, anything short of 'I want to tear my hair out' is a good place to be.

All three kids have been playing happily together for longer periods of time. It's really amazing and I love to watch how they all interact with each other.

The girls had fun one morning with shadow puppets. That's one good thing about winter light - great shadows. Even though it's a shadow, I can see the love on rara's face as she looks up at her daddy.

Our backyard has become an ice rink just as the temperature finally climbed enough so we could play outside. The big kids loved it, but rara wasn't so sure.

While my buddy has been actively seeking out his sister's to play with, he also really loves some time alone to vroom trucks in the living room.

The other day we were going to the grocery store and big sis had both her baby doll and a rather large bag. I reminded her that whatever she carried into the grocery store, she had to carry the entire time. She replied, "I am training to be a Mommy and Mommies have to carry both their babies and big bags."

You know how they say that the third child has no pictures in their baby book. Well the opposite is true here. I cannot help but take picture after picture of this face. The other kids managed to avoid the Mamarazzi that I am now. It makes me a little sad to think about all the pictures I missed taking of them when they were 2.

January 15, 2015


Half the school year has gone by and my buddy still has one teacher that doesn't quite get him. Her personality and the way she works clashes with his personality and he's been fighting her daily. So tomorrow I get to have an uncomfortable conversation with her where I very nicely suggest ways she could work differently with him. If that doesn't work then I get to have an even more uncomfortable conversation where I suggest she no longer work with my buddy and we switch teachers.

It's these little battles that unnerve me. I prefer pretending nothing is wrong and keep on keeping on. But I know that where my buddy is concerned that is just not an option. At home he's been good - actually playing more and demanding less iPad time. Of course he still plays rough with his sisters, but there's nothing I can do about that.

I did help school life out by getting a pair of high tops that my buddy can't get off and throw at a moments notice. He hates them and I hate that he can't independently get them on or off, but the school gently suggested that something needed to be done.

We decided it was time to get little rara a big girl bed. Step one is a new mattress and getting her off the futon mattress she's been sleeping on so long. I am looking forward to snuggling her back to sleep if she wakes in the night. And you can see she was super excited too!

January 2, 2015

a letter

To the Mother at the very crowded play area;

If you weren't sitting with your nose in the phone, you would have seen my son. Perhaps you would have noticed his almond eyes or his ears that sit low and stick out. I'm sure you would have seen him struggle.

You would have seen him waiting with all his might for his turn to climb the structure. You would have seen me right there with him, my hands placed on his chest reminding him that he has to wait. Maybe you would have shook your head while he shouted and banged on the floor a few times. I understood that he was shouting, "Me Please" and I was happy that he was hitting the floor and not the child.

You would have seen the glee on my son's face when it was finally his turn. As I released my hands, he climbed right up and joyfully sat at the top. You would have seen your daughter climb right up behind him, invading his personal space. You would have seen my son turn around and touch her face and say (rather loudly), "NO."

You would have watched your daughter gently scoot herself back off then flop to the floor like a silent movie star. After a moment where she realized that you were not paying any attention and merely laying on the floor wasn't enough, she started fake crying.

You would have seen her make a fuss while I looked around. Maybe you would have noticed the look on my face. I'm sure you wouldn't have understood the countless times I've had to apologize to people for my son's behavior. How places like the play area highlight my son's differences. How badly I want him to just be able to play with a large group of kids without the struggle. How I knew in my heart that he was not wrong this time. He reacted in the most perfect way possible for him - even if it did upset your daughter - I was proud of him.

If only you looked up from your phone, your daughter wouldn't have had to increase the volume of her complaints. When you finally noticed her and came to her side asking her what was wrong, my stomach tied into an instant knot.

Had you been watching your child instead of your phone, you would not have looked at me with disgust on your face and said, "How mean. Your son just pushed her off."

I understand the Mama Bear reaction. Really I do. Maybe this was your only chance to sit and do your own thing. I get it. But you just didn't have all the facts.

I tired to stay calm, but my heart was beating so hard and my ears were burning. I kindly explained to you that my son has Down syndrome and how your daughter was right in his face. I told you that he did touch her face but he did not push her nor did he hurt her. But I did not apologize.

I would have loved to stay for your response, but at that point my son was running off to the next fun adventure and my responsibility is to keep him and those around him safe.

I'm guessing you have forgotten what happened yesterday. You have no way to know that such a small interaction would sit so heavily in my gut, festering overnight.

The only thing I want from you is to look up once in a while. Notice the child who isn't behaving like all the others. Have some empathy. Chances are that child has something going on inside their little body that makes life really hard for them. Maybe even extend that empathy to their parent who have to help their child navigate a confusing and overwhelming world.

Just have some empathy. You never know what kind of struggles the other person is facing.

The mom of this boy.