Thursday, June 19, 2014

Second Class Citizen

Over Easter break, our travels found me making friends with a hotel employee whose brother shared Porter's extra chromosome. While we bonded over stories, one of her stories really stuck with me.
When her brother was around Porter's age, as he was exploring and navigating his home, he opened a door that no one expected he would open. Inside that room, his mother had been stripping and re-sealing their hardwood floors. He ingested some of the floor stripper. When they took him to the hospital, the doctor refused to treat him, because of his extra chromosome. What difference would it make, the doctor told them? He's already "retarded"...what good would we do?
I often thank my lucky starts that Porter is here and now. He's not treated like a second class citizen by the medical community. In fact, while getting a little philosophical with his allergist a few weeks ago, the allergist said something to the effect of- "What everyone wants is to be happy. He finds the happiness everyone seeks in his every day life." And it's the truth. We've built up a team who is helping Porter grow, learn and thrive. We're really lucky. 
But I'm lying to myself if I really believe society has accepted that people with Down syndrome are not really a lesser level of human. Because this week, a precious baby girl gained her angel wings. Her extra chromosome disqualified her from being placed on the National Heart Transplant list.  If you'd like to learn more about Baby Annie and her Golden Heart, you can read her obituary or check her Facebook page. For the second time in two weeks, my heart is breaking for the Down syndrome community.
What can you do? Please sign the petition on to request that people with Down syndrome become eligible for organ transplant.  Make sure that you check the "organ donor" box next time you renew your driver's license. One organ donor can save eight lives. But right now, no organ donor can save a person with Down syndrome, despite the fact that the life expectancy of a person with Down syndrome has increased to 60 in recent years. Please help give everyone the chance to live a long and healthy life. Thank you!

Wednesday, June 11, 2014

Spring Fevers

Our kids have spring fevers. Not the cool kind of spring fever where they're looking forward to something, but the kind that makes mommy nervous and brings Papa to stay with us for days. Have we mentioned how lucky we are to have the help! Thanks Papa!
These two kiddos seem to be trading viruses. Penny was sick last week and got better, only to spike a fever again last night. Here's hoping and praying they both get some good rest tonight and that health returns for all! Despite the fevers, they're relatively happy and their ears, throat, nose and eyes continue to look healthy. Just a pesky spring fever, we pray!
Today I'm hugging my sick littles even tighter. Because this morning we heard news from around the world that one of our Down syndrome family members was taken way too soon after a bout of meningitis. I follow a few Down syndrome stories on Facebook, one of which is Upside Down. Their family had a little boy who was just a few months older than Porter and they seemed to be on the same gross motor development schedule. Little Ryder crawled a few days before Porter and was getting closer to his first steps. Last night, his mum posted a picture of her little sick one just as I rocked my little sick one to sleep. But this morning, her little sick one got much sicker much faster and his little heart couldn't keep up. It's not fair! To have fought so hard to grow and learn and have a bacterial or viral infection steal it all away. I'm so heartbroken. Sharing this little light for Ryder. May he rest in peace. And may his family take comfort in knowing that the he reached such a wide audience with his little light, making the world a better place!

Tuesday, June 3, 2014


A few days ago, Penny and I were playing grocery store. 
She loves to fill the cart and then I assign everything a price and we do the math to get to the total for her cart of groceries. We've been learning about money and how the different bills and coins have different values. She seems to be understanding. We add up the total of the toys in her cart and she has $9.50 worth of groceries. I ask her for her money and she says "Credit, please." UUGH! She is so observant.
But really, what am I teaching her? For me, using the credit card keeps me accountable for each penny I spend. But she doesn't see the time RC spends managing our household budget each month. She doesn't understand that we use our credit card in a way that allows us to better track how we spend. She doesn't understand that we pay that entire credit card bill down to zero before each and every due date. She doesn't understand that buying with the credit card means these things aren't free. 
What she does understand is that she takes our credit card from my hand at the grocery store each week and swipes it to pay. It's almost like a game. She doesn't understand that we are incredibly blessed and lucky to be able to afford to buy groceries every week. 
I've got lots of teaching to do. And lots of thinking to do. Because she clearly learns from each and every action. She's still got so very much to learn.