Monday, January 16, 2012

Update on Team Amelia

The public outcry over the treatment of the beautiful little girl deemed unworthy of kidney transplant based on her mental development is staggering. Nearly 17,000 people have signed a petition demanding that Children's Hospital of Philadelphia reconsider their decision to deny young Amelia a kidney.

I just read a report on that included a statement from the hospital. 'CHOP has issued a statement saying it cannot comment on individual cases due to medical privacy laws, but reaffirms that it does not discriminate “in any way.”' and further reports indicate that the hospital has contacted Amelia's family to arrange a meeting to discuss her daughter’s case further.

It just goes to show you what THOUSANDS of angry parents and friends can accomplish when they speak out for what is right. Allowing Mia to have this procedure is the ONLY right answer.

Denying a patient a medical procedure based on mental development or difficulties is in direct violation with the United Nations Convention on the Rights of Persons with Disabilities. In Article 25 it states that parties are to “recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.”

Further, Article 10 is about the right to life and reaffirms that “every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”

I will be interested to see if CHOP actually stands by their original decision or if Amelia is given the life saving transplant that would never be denied a typical child. It still disturbs and disgusts me that in 2012 we are still so in the dark ages when it comes to people with cognitive delays and disabilities. There are so many stereotypes to overcome- so much ignorance to combat and stories like this one show just how many people are willing to stand up and demand better- to demand a change.

The fact that strangers all over the world are fighting not only for this ONE child but for ALL children that may one day be denied gives me hope that we are moving in the right direction.

If you haven't signed the petition for Amelia yet you can do so here:

As always, I welcome all comments either to the blog or to my email address

Friday, January 13, 2012


I settled down to relax for the evening next to my husband. The boys are in bed and we were going to watch the final episode of Extreme Makeover Home Edition. I got on my phone to check FaceBook on a commercial and was sickened and dumbfounded by a story I read about Amelia, a young girl who has Wolf-Hirschhorn Syndrome.

Amelia needs a life saving kidney transplant. She has a family donor. She was DENIED this operation because she has mental retardation.

Wait! What? Back up!!

Am I missing something? Is it not 2012??

Sadly, I am learning that this is not an unusual occurence in the world. If a patient's IQ is not high enough they can and routinely ARE denied transplants. HOW IS THIS LEGAL?

Just because a doctor does not understand the value of a child's life with a disability does not mean she doesn't have a HIGH QUALITY OF LIFE! Just because some arrogant jerk thinks her life is worth less because she is not as high on the IQ scale as another child he is willingly sentencing her to death.

The last I checked GOD is the only GOD. Just because you wear a white coat does not make you a GOD- not even close! This doctor who decided Amelia is not worthy is a MURDERER. He is WILLFULLY killing a beautiful child because HE is ignorant!

I am sick over this.

I sit here, thinking of my beautiful boys who are technically "retarded" based on a medical definition. I wonder what I would do if for some reason one of them needed a transplant to save their life and they were denied. I know what I would do. I would FIGHT. I would RISE UP and DEMAND better! I would take their story to every person I could think of and I would make sure that every media outlet, every politician, every parent and patient's rights group knew about their situation. Amelia may not be my daughter but as the mother of two children with disabilities this hits closer to home than I can express. I would rip the very heart from my chest and somehow give it to my child to ENSURE he would live. For Amelia- I will fight just as hard. I will fight and speak out for this sweet girl because SHE CAN'T speak for herself.

Who should be the one who determines who lives and who dies. Easy. God. Not a doctor. NOT a team of doctors. NOT SOME HOSPITAL.

Help save Amelia. Help her family. Help kids like Casey and Connor who may one day be in this same boat and will need THIS case as a precedent setter.

SPEAK OUT and RISE UP! Fight for Amelia. Fight for all the kids who can't do it themselves.

To read more about Amelia visit here:

To learn more about Wolf-Hirschhorn Syndrome visit here:

This is SAD. But more than sadness I feel anger- RAGE! This may be about a little girl I have never met. But next time it could be MY sons. It could be any one of the hundreds of children I have met in the Ds community. I WILL NOT allow myself to sit idly by while this happens.

Stand and fight with me. Children's Hospital of Philadelphia has a FaceBook page. If YOU are disgusted- write them there. Share your outrage!

Thursday, January 12, 2012


Life with two 2 year old's is pretty amazing. These two crazy boys go non-stop from the time they get up (usually way too early for my taste) until I finally corral them into cribs for naps (which are usually just quick pit stops to recharge their little batteries) so they can play until bed. Everything they do is fantastic!

I know, I know, someone out there is dying to say , 'Just you wait! The terrible two's are coming' or the 'Trying 3's are just around the corner'.... I can not believe how many times I have heard those things when I proudly proclaim my boys are wonderful and they are well behaved. They are. Truly.

Now, don't get me wrong- we have our moments. The boys are going through a particularly bad biting phase right now. It's not uncommon for one or both of them to have at least 3 bruises at any given time from his brother's teeth. I am trying time out right now. It's somewhat effective.

Also, like typical 2 year old's they don't like to share. Ever. They subscribe to the Toddler Property Laws.

Casey especially believes that ALL the toys in the house are his and his alone. If Connor is across the room playing by himself Casey will quickly crawl over and take whatever it is he is playing with away from him. If Connor resists- Casey bites. On the bright side, they are starting to combine skills- stealing toys AND biting.

They fight sleep, they throw food and cups on the floor at meal times, they pull the dog's tail and ears and occasionally his tongue, too! They have selective hearing, they scream when they are frustrated. They are busy and curious and INTO EVERYTHING! They pull paper out of drawers, dump my purse out, and fight me tooth and nail over diaper changes. But guess what? They. Are. Two. It's all normal boundary testing.

I accept this.

I relish it.

I LOVE that they are so....


People assume my life is hard because I have 2 boys with a disability. That's THEIR perception. In my eyes, Casey and Connor are the perfect ones. And, my life is not hard. It's wonderful. My boys are just like any other 2 year old's you may meet.

They love Sesame Street- especially Elmo.
They get excited when they see big trucks outside our house.
They love to read books.
They enjoy soaking the entire bathroom(and mommy and daddy)during bath time while seeing who can splash higher, faster, or more.
They like wrestling with Daddy.
They love toy trucks and making truck noises.
They build awesome towers with their blocks.
They enjoy finger painting and coloring.

Totally typical. COMPLETELY wonderful.

People will always have their ideas about Down syndrome. It is my job to make sure that I inform as many as I can that life with a bonus 21st chromosome is awesome. Yes, we go to speech therapy 4 times a month and physical therapy twice a month and we have an awesome Help Me Grow and Early Intervention team but I don't see these things as a burden or as anything abnormal. Lots of kids and adults use physical therapists and speech therapists- we see them all the time at our appointments. I view our extra things as a bonus- we have an entire support team to answer questions, help us to understand how the body works, how the brain processes sounds, how hard the hands work to grip a pencil. I look at all the extras as BLESSINGS!

We have a great life. I think everyone should be as happy and fulfilled as we are. I never look at my life at the end of the day and wish I were someone else. However, EVERY NIGHT I thank GOD for giving me such a rewarding and love centered life.

Thursday, January 5, 2012

They won't eat REAL food...

My boys are EXTREMELY picky eaters. Or, "non-eaters" to be more accurate! They live on dry Cheerios, plain waffles, dry toast, applesauce, yogurt, milk, Goldfish, graham crackers, egg yolks- no whites- and occasionally pizza or chicken nuggets. That's it. They have been this way for over a year now and everyone keeps telling me they will grow out of it.

I am beginning to question that.

My husband is also really picky. He does eat a better variety of food than the boys and is far more willing to try new things but he is still pretty limited in his diet.

It must be genetic.

Anyway, my boys won't eat real food. That said, my nickname for Connor is "the goat"- he will eat paper, pool noodles (you know, the Styrofoam ones?)and he can regularly be seen LICKING the carpet. Thanks to our dog for teaching him *that* delightful trick! Casey also enjoys paper- important papers seem to be his favorite- and they both LOVE to chew on socks.

The other night we took the boys up for bath and while I was undressing Connor, Casey quickly crawled away and went to see what our cats were up to. We have 4 cats. Little Lady is the momma to Michael, Junior and Goliath. All the males are pretty large cats. They also all seem to shed wads of fur all over the house. All. The. Time.

So, Casey is on his adventure and I peek around the corner to look for him just in time to see him pick up a gigantic fur ball from the floor and SHOVE it in his mouth without a hesitation. I immediately scrambled over trying to pull the kitten-sized ball of fur out of my toddler's mouth. He attempted to bite my fingers off and I jumped back, shaking my hand and wincing at the teeth imprints he left. I refocused on getting the hair out of his mouth only to find he swallowed it. Oh. My. Gosh! My kid just ate a hairball. Fail.

Not only did he eat the hairball- he also seemed to enjoy it. Immensely. To make that point more clear he smacked his lips a few times and then smiled at me. He looked content and I felt nauseous.

Pasta? No way!
Fruit? Nope!!
Vegetables? Not a chance!

But a rogue hairball on the carpet- DELICACY!

I'm still waiting to find that one in a diaper.

Ahh, the joys of motherhood.

Monday, January 2, 2012

New Year. New Resolution.

Happy 2012!!!! Looking back on 2011 I can honestly say we had a wonderful year. I would rate my overall happiness with 2011 around 98%. We somehow managed to keep our two boys super healthy last year. They each had an ear infection and a couple of cases of pink eye- though I debate the diagnosis. Connor had his little broken leg but he was a great sport about being casted for 4 weeks. We had a great turnout for the Buddy Walk. We got to meet some really fantastic new friends and spent some serious quality time with family. I am so thankful and grateful for every blessing we had last year and I am very optimistic for 2012!


I am guilty of making New Year's Resolutions and fizzling out on them within the first few months of the year. I would like to break that cycle this year. I am making a few, simple resolutions for 2012:

*Update this blog once a week. (Hopefully that will be possible after baby #3 comes in June!)
*Continue to spread the word that DS is not scary- that my life doesn't suck, and that my kids are MORE THAN WORTHY OF LIFE!
*Begin potty training Casey and Connor.

That's it. I hope that our friends and readers continue on our journey with us. I hope that we can get the blog up to over 100 followers- we are at 77! I also hope that 2012 is the year I can make a bigger impact, and a bigger difference in the world. It is an honor and a privilege to be on this road and to speak for my sons until they can speak for themselves. Thanks for being here in 2011 and staying in 2012.

Love, Meghan