Thursday, October 29, 2009

Just get to know me

It happened, I knew it would at some point. It wasn't his fault he had never heard it in our house before, and I knew he would hear it at school, and I decided I would address it when it came up instead of addressing it before he knew anything different. Then it happened, one of our boys called someone retarded. He wasn't in trouble, we talked about what the word means, why doctors use it, and how if it is used wrong it is hurtful, and mean. Alex's older brothers adore him, and love him just the way he is. They love him, because they know him.
So if you are reading this, and you use the word retarded when you mess up, or dislike something, if you are teaching your kids by your own words that its ok to say this word, STOP! Change the way our kids think and talk. Cause if you just get to know this little boy............. He will change you! By the way Alex, now your brothers have your back!

Wednesday, October 21, 2009

One foot in front of the other......

I could try and fool you with the title of this post and a picture of me looking stressed out, and tell you that nursing a baby, in between tube feeding Alex, homework, soccer games, and therapy sessions, that I'm dragging along putting one foot in front of the other. That days and nights all run together, and there is no rest for the weary. I could try and fool you, but then I would be leaving out some very important news....... And one very proud boy!

Alex is starting to walk with assistance, even getting excited, and on occasion asking to walk, in his own little way.

Look mom ONLY ONE HAND!!!!!

Thursday, October 15, 2009

Naughty cuteness

So not only are we walking into the kitchen to find the fridge open, we are now finding open vents throughout the house.
Somehow I find it cute.

Tuesday, October 13, 2009

I dont want to join a union!

Is Gov. Quinn Playing Politics With Care for The Disabled?
Updated: Monday, 12 Oct 2009, 10:18 PM CDTPublished : Monday, 12 Oct 2009, 10:18 PM CDT
Larry Yellen

Chicago - For the last two weeks, there's been an election underway in Illinois you probably haven't heard about. It started with a decision by governor Quinn, a decision which has some families accusing the governor of playing politics with care for the disabled. Our Larry Yellen has the Fox Chicago News investigation. ************ When Pam Harris's developmentally disabled son Josh wants to communicate a message, he uses a special device... But Harris says it's governor Pat Quinn who needs help communicating his message to parents like her.

“I can't imagine he even thought of this being about people and families..”
Harris is one of about three thousand "personal support workers" in Illinois. They receive state funding to care for developmentally disabled individuals in their homes. In her case, it's her son Josh.

In June, Governor Quinn signed an executive order, which for the first time authorized collective bargaining by these workers. Now, she and other parents working as caregivers could be forced to join a union. Harris had heard nothing about Quinn's decision.....
“I don't rock the boat, I just do the very best to make sure my son has a busy and meaningful life.”

But now she and others were the target of a heated organizing campaign.
“When my doorbell rings at eleven thirty Sunday morning and there’s two people in purple shirts, one from California, one from Virginia-- nice enough young people-- nice enough, but that's an invasion of my privacy. “

The more she learned, the more she feared that in addition to paying dues of six hundred dollars a year or more, she would have outsiders telling her how to care for Josh.
“Union contracts talk about suspension, probation, training, days off? It's ridiculous, to draw a line from a Union to my own efforts to provide a meaningful life for my child. So she started her own campaign against the organizing effort. And she contacted her state representative, who wants Governor Quinn to reconsider the executive order. Rep. Jim Durkin says he is “afraid this order is going to disrupt the unity that these parents have and the family members have with the family member who is profoundly disabled.”

Two unions, the SEIU and AFSCME, are competing to represent the workers. They both say caregivers will benefit greatly from Union representation, including better wages and benefits.
AFSCME Organizing Director, Tracey Abman says “This executive order specifically does not get in the way of what goes on in their home. This is really about bringing them together so they have a powerful voice in Springfield where the decisions get made.’

But some AFSCME officials admit the governor's order is being implemented too quickly.
“We, AFSCME, had argued both with the state and the SEIU that there should be a period of six months where people could be educated about this executive order, what it meant, and the great opportunity it provides.. “Added Abman.

Governor Quinn’s office told Fox Chicago News “These workers are generally not making high wages and many are not covered by health insurance. However, workers should not be pressured into any decision and whether they decide to organize is totally up to them."
But Pam Harris noticed the governor's recent endorsement by the SEIU and wondered it this was more about politics, than wages and health insurance. “There was our governor, standing aside the SEIU leadership, in front of the SEIU banner, saying "Early to bed, early to rise, work like hell and organize."

The SEIU says it endorsed the governor because he cares about working families, and is a leader in ethics reform. Meanwhile, the voting ends next Monday, and Pamela Harris continues her campaign.

“This is so far from anything that I have ever done before. But I'm worried, I'm a mother, and I need to protect my son, and my family, and I am concerned.”

(Pam Harris is my RTS sister, Josh is Alex's RTS brother. )

October 13, 2009 1 Month Old!

Monday, October 12, 2009

A blurry world

When Alex had his surgery this summer his vision was tested while he was sedated, along with his pressures since kids with RTS have a greater chance of having glaucoma.
His pressures were fine, but his vision was not. He is near sighted, so if we aren't close to him, we are blurry. Its how it has been all his life. The doctor said he can see the tree, but probably cant see the individual leaves.
So reluctantly I went and picked up his glasses on Sunday. Why reluctantly? HE SCREAMED when the lady tried to fit him for glasses, and he really doesn't like anyone but me touching his face. So I was sure it wasn't going to go well.
SURPRISE, SURPRISE! Alex you fooled me!
I sat him in his favorite chair, put in a movie, and slipped on the glasses. He started to look around the house like he was in a new place, he was curious and took them off a lot, but never cried, never seemed the least bit bothered by them.
I took him to his favorite windows so he could look out and actually see the great outdoors! It was so much fun to see him see things for the first time CLEARLY! I must say he is the most handsome boy in glasses I have ever seen!

Bye Bye Blurry world!

Friday, October 9, 2009


Even though we are busy, there is still time for play. Alex's new favorite thing is to spin bowls on the kitchen floor, he has his own little way of throwing the bowl so it spins just right, when the bowl is in a good spin he laughs, then does it all over again!

Max has started to enjoy his baby gym for about 10 minutes at a time.

Thursday, October 8, 2009

Old wounds

I honestly thought many of my wounds from the time when Alex was born, and since his diagnosis were healed. I have found that they were just scabbed over. Since Max's arrival I have felt many wounds healing, listening to the lullaby music in the hospital, and watching my baby in the warmer beside me did not go unnoticed. I remember all to well feeling so empty, literally, my belly and my arms after Alex was born. But in the same hospital, with the same doctor, I got to do it again. It was healing.
I am thrilled to feed Max without a feeding tube, to go and come with my baby as I please. I'm not constantly thinking of how it should have been with Alex or hoping of what might be. When I look at Alex I don't see the RTS diagnosis staring back at me, I see my Alex. Alex is who he is, and I love every inch of that boy.
I appreciate the journey that has brought us to where we are today. It has been the hardest thing I have ever done, and will continue to do, but it has made us stronger, and we don't miss the little things. Instead of sitting up in the middle of the night with alarms, and nurses, Im up with a now smiling 3 and a half week old. Instead of wondering what the future holds for Alex, I see that he is going to be just fine.
As unplanned, and as scary as my pregnancy with Max was it has completed our family, and healed old wounds.

Sunday, October 4, 2009

Tick Tock Tick Tock..... Time is ticking away

My day usually starts around 2:00 a.m to feed Max, back to sleep by 3:00, back up around 5:30, sometimes 6:00 for another feeding. Noah and Joel up at 7:00, feed breakfast, off to school at 7:45. Wake Alex up at 8:00, give him his meds, feed Max, then feed Alex around 8:30. I have all my energy in the morning so I try to do laundry and pick up the house in the morning in between feeding Max, and feeding Alex again at 11:30. Then its nap time for Alex at 12:15, if Max is asleep I sneak in about a 20 minute nap, then back to laundry. Alex is up around 2:00, feed Max, then feed Alex around 3:00. Max probably wants to eat again around 4:00. Noah and Joel come home from school, Adam gets home around 4:45, and then someone has soccer practice. Dinner around 6, homework, of course Im feeding Max, Adam or my mom will feed Alex around dinner time, Max eats some more around 8:00, then again around 10:00, I go to bed, and Adam has Max for the next three hours so I get a good 3 straight hours of sleep, which usually gets me up around 2:00 am for the next feed. These are my days, I love it, everyone is healthy, and happy, and that is was matters. Trying to find time to come blog is a whole other thing. I have so many thoughts I want to get down on this blog, but I cant seem to make here to do it. (sigh) Alex loves the fridge, he learned how to open it a few weeks ago!

Learning about apples during a feed.

Max's favorite place to sleep is the couch.