Wednesday, January 28, 2015

March 1, 2013.

That was my last post. Huh.

So much life is squeezed into every day these days. I am still grateful for life. I am still grateful for the lessons I'm learning. But there is a but.

...BUT I am tired. Even with a good night's sleep or two, I am simply tired.

Who was I a handful of years ago...when I thought I could have a fast-paced, exciting career that challenged me, stimulated me, using my God-given gifts to make a difference?

Who was I when I knew what was happening in my friends' and family's lives. . .and was there for them? Not to mention what was happening in my city, state, world? 

Who was I when I vowed to not let "special needs" define me, my child or my family?

Who was I when I thought having three kids would be hard, but manageable?

What IS that word any more? Man...age...a....ble. Hmmm.

Life has a million and one ways to make it so very hard to make life-giving choices.

And yet, I know this is not forever. Just a REALLY LONG STRETCH of challenge that I need to figure out how to enjoy because in 20 years I will wish I was back at this point.

I just hope I don't spend the next 20 years wondering Who was I . . .

Friday, March 1, 2013

Hero and Heartbreak

A young man, whom I have been fond of since his birth, did a heroic thing today -- and I am bursting with pride, and sorrow.

He is an older elementary school student. He has an uncle with autism. He went to daycare with a little boy who has Down syndrome. He has a little girl in his grade, and class, at school that he has grown up with who also has Down syndrome. And because he has been a part of our lives since he was born, he knows my son who has Down syndrome. At a very young age, this young man understands what being a human being actually means, and he displays more courage and heart than I see in a lot of adults today.

Today at school, a group of his classmates were preying on two other students in the classroom. The one is the same little girl with Down sydnrome, and the other has some other challenge. These boys were calling these two kids "retards," telling them to call themselves "retarded," trying to get them to do stupid or embarrassing things and more. Yes, these boys thought their actions were funny.

Our hero got angry and told the boys to stop being mean. When the group didn't listen, he got his teacher and told her about the situation. That takes guts. This hasn't been the first time that this hero has had to intervene, but the older he gets, the harder it is. That act alone is brave, but the story doesn't end there.

It is an on-going issue with this group of bullies, the ring-leader in particular. Our hero was so very bothered by this whole thing, that later he and his good friend talked about how they really needed to talk to this group to try to explain why what they were doing is mean and wrong and how it just needs to stop. When our hero and his friend confronted them, the ring-leader got physical, and our hero walked away.

This hero got in his mom's vehicle and broke down...inconsolably upset by the "wrongness" of the entire situation.

How many people -- kids and adults alike -- would have the fire in their gut to do what is right, no matter what? How many people would do whatever they could to make things right for the good of human kind -- even if it means that it could make life uncomfortable for themselves for a while?

This young man is my hero. I think of him and his actions, and my heart almost bursts with pride and gratitude.

At the same time, my eyes well with tears and my heart breaks in a million pieces.
"It is 2013. How in the world can people act like this any more? Are you worried about this?" asks my friend, referring to the fact that I have a son with Down syndrome.

Interesting timing. I have been stressing over this very thing for weeks now, as we plan for our middle child with Down syndrome to begin Kindergarten this fall. I get all sorts of happy opinions on how well he'll do, how ready he'll be, how people just love him and he'll fit right in wherever.

I know all of that is true to a certain extent. But I also live this every day, when those people do not. I hear all the time about challenges in adapting curriculum, integration, bullying. I have experienced the outcasting and bullying as an education reporter in our schools and in doing a lot of school visits  for my previous job. I know how wonderful, and how challenging, my son can be. I know how he loves laughter and adoration from his peers, and the lengths he'll go to for a laugh -- and I know just how easily manipulated my son can be in that regard -- how he could so easily be putty in the hands of someone like the bully in my hero story.

So as I listened to my friend tell the story about our hero, I sobbed. By the time it was my turn to talk, I could barely speak.

She asked me if I'm worried about this.

"Yes," I choke. "I am really scared."

I sobbed hard after we hung up, and I shared the story with my husband. I could see the looks of shock, anger, concern...and the tears in his eyes through it all. I cried for another 20 minutes at least.

"Mom, why are your crying?" my 7 year old asked.

"Because sometimes people are dumb and mean, and it makes me really sad," I managed to get out.

"Are you going to tell her the truth?" my husband asked. We both know full well that we need to prepare her for what's ahead. Life with her little brother at school isn't going to be a typical experience, and we know in some cases it will be really hard.

"You probably should, because I can't talk . . ." and the sobbing starts again.

My husband does a very nice job explaining at a kid level with minimal details, and my smart little girl gets it right away. "I won't be mean like that, because I know how it feels."

And here we are, hours later, my head still stuck on it and my heart continues to flip between pride and sadness.

I know that no matter what happens or how things evolve, there always has been -- and always will be -- ignorant, callous, self-serving people in this world. It is unfortunately human nature for a percentage of humans to be this way. I have a child with special needs. It is my job to protect him; to take care of him. The truth is, this issue will never entirely go away for the rest of our lives. I can't always protect my son--even in situations where he may really need it. And unlike my other children, he may not grow to be able to fend for himself either when those callous, ignorant people choose to prey on him. And that scares me, and makes me sad.

I try to continue to think positively about the fact that our young little hero exists -- and that there must be more like him who will also do the right thing when it's our son's turn. I am so grateful for his heart, his bravery -- and his selflessness in this whole situation. I wish there was something I could do to reward him in some way for his efforts. He exemplifies what life as a human is supposed to be.

Sunday, September 23, 2012

Daddy-daughter chat


I really miss you today.
I miss you every day, but as of late it is even more than usual. I miss talking to you. There is so much going on and I just feel like I need a conversation with you for some different perspective and insight. I know I'll see you again, but patience is not my strength. God has given me so many ways for me to work on that.

I wish we could have you back.
I wish you never had to leave.
I wish I could get used to the fact that you are gone.

Too bad I wish for such impossible wishes.

I love you.

Friday, May 25, 2012

Go 'way gumpa

So my two-year-old loves sing-song silly games. Our most popular right now is "MY mommy" and "Go Away." Either way, my son loves to start the games, "MY mah-mmmeeeee." And you echo him back in the same way, to the same ryhthm, "My Coopeeeee." Repeat -- over and over and over. He loves it.

It is the same with "Go Away."  "Go-WAY-Mommeee!"  "Go-WAY-CoopEEEE!" Over and over and over.

Tonight as I was changing his diaper, he smiled at me and started the "Go-WAY" game. He giggled and smiled at me the whole time we exchanged "Go-WAYs" in the familiar sing-song rhythm.

After about 6 times each, he turned his head away from me to look towards the bathroom door.

"Go-WAY ???" I couldn't make out what he said.

I asked "What?" And he looked at me momentarily, but I was interrupting him, so he turned his head back to the door and said clearly "Go-WAY Gumpa!"

Quiet. Then again, "Go-WAY Gumpa!" I was dazed by this and didn't say anything at first, then another "Go-WAY Gumpa!" he said with a big smile aimed at the door.

The empty bathroom and empty hallway through the door.

"Are you saying Go-WAY-Grandpa?"

"Where is Grandpa?"


"Grandpa is in our house?"


Then with a big smile he said "Peeee-yeeewwww" regarding the diaper I just finished changing and he was ready to run back outside.

It was strange to say the least, but amazingly cool at the same time. Of course, he can have a very active imaginary mind at 2 . . . but I honestly think that Cooper decided "Go-WAY" is more fun to play with Grandpa Chuck, even if he isn't "here."

Sunday, January 29, 2012

Well, we tried . . . becoming a family motto

I giggled to myself in my head as I was about to hit send on my email to our team at work.
". . .will be leaving a little early so we can get on the road for a family weekend get-away."

Ha, ha. . . Tuesday my oldest had to stay home with a fever and incessant, barking cough. I had be doing nasal flushes morning and night, keeping the humidifiers going and trying to nurse her back to good enough health to be around others by weekend.

Then came an email response, "Have a great time and don't think about work for a minute." Ahhh, and there it is again. A robust laughter in my head. Not only do I not have a job that I can walk away from for an entire weekend, but little did she know that early that day I received a call from daycare saying that my youngest had thrown up a little first thing in the morning. I attributed it to his downing three cups of juice before heading to daycare and his zealous way of playing when he gets there. But I still wondered all day. Just because daycare didn't call the rest of the day didn't mean we were totally in the clear.

I was really looking forward to this weekend. My mom, all three brothers, sister-in-law and niece and nephew, two aunts and uncles and cousins. . . this just rarely happens. And I have been in need of an attitude adjustment and break.

When I picked up my kids on Thursday afternoon from daycare, there was a note that just before I got there my youngest had a really yucky diaper. But then he was fine all night. The next morning, I thought he looked a little pale, but otherwise he seemed OK. At 11 a.m. I had a message that he was at 101.6, wasn't himself and needed to go home. My husband picked him up and the debate began.

Do we cancel our trip and wait to see what happens? Do we go for the first night and see how it goes and come home the next day if we need to? Will we once again be bringing sickness to the party for everyone to share -- seems to be the case all the time.

Baby took a nap and we decided to try it. We were determined to try to have a relaxing getaway weekend since they come so seldom.

And as I type, here goes that brain laughter again, this time slightly more sarcastic.

Our weekend in fast forward:
*locked hotel door in frigid temps with 3 little ones
* baby with fever and nasty diapers (Friday only)
* a first evening of visiting with no one as we chased kids all night
* less than desirable amounts of sleep for all parties
* a daughter whose skin literally gets burned from the pool chemicals -- perpetuating a weekend of tears and pain, with some freaking out. A week of red, painful skin ensues.
* a Saturday with very limited time spent with family for the swimming and chasing of kids
* being drenched by projectile vomit by the middle child in the afternoon of Saturday, followed by hours of sitting in the room with him -- a final puke close to midnight, in the bed, so slept on towels on the bed
*arguing for husband and me because we're both tired, stressed and not communicating worth crap when you're constantly headed in different directions
* two hours of work in the car
* laundry, unpacking, organizing for the week ahead upon arrival home with very little energy to accomplish it . . .it sits half done as I type holding baby wishing for an early bedtime for all.

I love, love, love my family. I am grateful for the collective 20 minutes of talk time I got with my mom over the weekend, the few minutes I had to interact with the other little ones of the group, the hour+ with my little bros after everyone else went to bed, and the 60-second conversations with everyone else. . .
Now I think I need a few weekends to catch up from the relaxing family getaway weekend.

Insert hysterical head laughter here.

Wednesday, January 25, 2012

Soooooo over it

I'm going on the record.

I am sick of poop. Diapers, potty training, the like. I still have a long ways to go until I can say I'm officially done with either . . . but I am SOOOO over these items.

Few things in my life have been this exhausting, disgusting and expensive.

All the laundry, all the diapers, all the cleaning carpets, furniture, etc.

Golden will be the day when this too has passed.

Monday, November 7, 2011


I am sick. I am in the room that you dubbed, "the cave," wishing I could sleep as well right now as you always did down here.

It's kind of awful when you can't sleep so you resort to Google searches for no reason. I can't do much else as every slight move is miserable.

It's even more awful when I search your name and all I get are the obituary notices. I'm missing you.

I found a neat calculator that says that it has been 470 days since I last saw your face.

I'm in a room that I dubbed as the "Grandpa Suite" on a bed that should be in Arizona, sick with a nasty  headcold, sick to my stomach with the tummy flu, and heartsick because 470 days is just so long.