Does anyone truly listen when we advocate for our children?

Yesterday I was part of a huge battle; a battle for the dignity of my three youngest daughters . It took place on Facebook and was waged against a group of teenagers who felt it was extremely witty to ridicule people with Down syndrome and other people with disabilities as well as liberal use of the N word and R word over and over again, some of their posts were depraved, sexual content, pornography, everything a parent would be proud to see I am sure.... They also copied pictures of people with Down syndrome off of every site they could and posted them, making fun of them. It wrenched my heart and offended me.

The problem with Facebook or any other social network is a persons ability to open a new account within minutes. Parents and friends of people insulted reported each racist and bigoted post this group made, and while one group would get shut down, these poor misguided and very hateful children would open another, bragging that no one would stop them from doing what they wanted. However, their identities could not escape the parents of the children they maligned, and they have had to face the consequences of their actions. A lesson we all need to learn I suppose, there is no such thing as anonymity while you are on-line. I do not think for a minute that they will be miraculously healed of their hateful bigoted attitudes. But maybe, just maybe this will make them think...

I went to bed with tears in my eyes, soul weary, just so sad, I am tired of fighting ignorance, hatefulness, bigotry, and stupidity. I want the world to be a fair place with total equality for every human being, I want something the human race is incapable of.

I woke up and believed today will be a better day, and then read about this:
http://www.newsleader.com/article/20100222/NEWS01/2220318

In part it said:
State Delegate Bob Marshall of Manassas says disabled children are God's punishment to women who have aborted their first pregnancy.

He made that statement Thursday at a press conference to oppose state funding for Planned Parenthood.

"The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children," said Marshall, a Republican.

Another slant on the whole "Having this child has to be your fault" belief system, I have to say, their God is not mine, He does not punish anyone, let alone my innocent children. I am not going into the whole abortion issue, which is why he talked about this in the first place, I believe he is making a preposterous statement to get a knee jerk reaction, rather like the children on Facebook yesterday.

Truly, I suppose no one is without sin, I know that when Meghan was born an ill-advised Christian friend said to me;"You must have committed a terrible sin to be cursed with a Down syndrome baby". I was floored and sadly that ended our relationship.

Yes, it is not easy to hear your baby has Down syndrome, though my pain in hearing about my daughter was not that she was born with Down syndrome, it was the sadness knowing she would not be treated like a whole person by the majority of the world, that people would veer away from her and hateful misguided people would try to hurt her. We hurt that which we do not understand.

I look at my youngest three and see whole children, just as HF wanted them. I have never met a perfect child, all of them have different issues and quirks that make them uniquely them, but I think I have begun to live in a bubble, a bubble I created to block out a world that cannot and will not see the beauty my girls possess. I surround myself with friends who also have children with Down syndrome and subconsciously avoid others. The few people I let into my bubble have to love and accept my girls too. The others have the door shut in their face, I have no room in my life for people who carry hatred in their hearts.

How far is too far to protect our children? They have to live in the world too, to be a part of this imperfect and sometimes cruel world, where do we find balance in a imbalanced society? Honestly, I do not have an answer to that question, but I will be praying and dreaming about this for a long time, to try to find a solution that will work best for us.

Will you pray too?

Would also like to mention

October is Julia's favorite month, it is her birthday month (October 7th) and Halloween, she adores dressing up for Halloween! I means a lot to me too, she was born in October, my first little girl, she was such a chatty little toddler and her vocabulary was amazing! She was and is a smart girl. She is also beautiful (yep, moms are biased, but she truly is beautiful!) She is kind, empathetic, and a good friend. Loves concerts, her Camaro, musicals, singing, digital photography, what can I say, I am very proud of her!
October is also Kara's birthday, she will be 5 this year, I still cannot believe it, she was so tiny when we brought her home, weighing 19 pounds and wearing 18-24 month clothing, now she is in size 4’s! We went to storage and took out a bin of Gymboree (with a few other brands too) for Kara (they were Meghan's who admittedly had enough clothing to be octuplets) One bin has enough clothing for 3 weeks, and there are 7 more there. If you visit me, you know we have girls clothing coming out of our ears, I am not certain I want to take the other bins out of storage. BTW, Kara looks so adorable in Meghan's almost new hand me downs. Today (for my Gymboree friends) she is wearing Romantic Garden! Kara is a stinker; a busy, funny, active, reckless, happy, silly little girl, but she is also very sweet and is now playing with baby dollies. To see her hug them and put blankets on them while they sleep, just too precious. She also throws them, steps on them and leaves them outside where the dog chews on them, but hey, I will focus on the good things.
October is also Down Syndrome Awareness Month and Breast Cancer Awareness month, among others things, but of course those two have meaning to our family. It has been 6 1/2 years since I heard my husband tell me I had breast cancer. I watched the Survivor Movie and it brought back the fear I felt when I had full body scans to check for metastasis, the first was a CT scan, we laughed and joked through that, those gals were wonderful and supportive, my heart was pounding as it crossed over my head and torso. I made a joke when they said my brain looked healthy, normal, after so many jokes about the airheaded blondes, it was good to have proof there was indeed a brain in there after all.

Then came a full body bone scan, this one was bad as the tech was a somber and uncommunicative guy, he was frankly very mean considering why I was there, showed no compassion whatsoever. Ever had a bone scan, if you are claustrophobic, you better get sedated; the scan is 1 inch from your nose when it gets to your head. For me they began at my feet and worked thier way up. When we finally got to my head the techs demeanor changed, he seemed rattled and he kept going over my head again, my goodness, but the fear that leapt into my throat almost choked me. He asked me if I was ever dropped on my head or if I had a steel plate at one time. I realized he was looking at the strange indentation I have on my skull and chuckled. It has been there all my life. Maybe my siblings did drop me, it is likely, but after the scan I learned that many family members have the same defect, it is genetic! Still after all the stress the radiologist took pity on me and told me my scans were 100% clear of abnormalities, meaning, no bone metastasis. Whew, that was a huge relief.

I also had a MUGA scan of the heart to check left ventricular ejection factor, the oncologist wanted to be certain my heart was healthy enough for chemotherapy as Adriamycin (doxorubicin), one of my chemo cocktail, could cause cardiac damage. A scan following chemo showed some minor and trivial heart damage, and I was relieved to hear that.
After chemo, I had a PET scan to make sure I did not have new tumors forming, blood work came back questionable; thankfully that was also clear. I have had three PET scans since chemotherapy. They always unnerve me, but meditative prayer helps me through, I have not had any scans since 2006, when we committed to adopt one and then two little girls and came home with two different little girls, international adoption is sometimes more of a crooked trail than a straight one.

I hope you watched the YouTube video and hope you can understand how much a cancer diagnosis changes a person, a family. So many people tuck tail and run when their friends or family member are diagnosed, so many survivors tell me it is a true test of a relationship, so very true. Cancer scares us, and we do not always behave rationally when it enters our lives. Please swallow your fear and support your loved one, your friend or co-worker through their treatments. If you are a boss; just know that firing survivors because they miss work isn’t just illegal and immoral but demoralizing as well (yes, it happened to me and too many others) I truly believe that one of the best gifts you can give a survivor is your time and your prayers. Talk to them on the phone, take them to treatments, bring them food, be there for them.

Moving on…we took Meghan and Amanda to the dentist for check-ups yesterday, Meghan may have a small cavity and poor Amanda, her mouth was covered in herpes blisters, her gums are also bright red and bleeding. Her dentist said it was her first outbreak, meaning, she just got herpes simplex one. I had a cold sore 2 weeks ago and have to think she got it from me, goodness, I feel so terrible about it. Meghan also had one, we were all pretty sick. I should not have let Amanda give mommy a kiss. She is feeling better today, and ate all of her breakfast,. The dentist said the outbreak will last a few more days, she has been so miserable, but it is good to know why now. My good friend (a fellow BC survivor) tells me that sometimes institutionalized kids have compromised immune systems and often get herpes very easily because of that. She also tells me it gets better the longer they are with your family. Thanks Dede, I hope poor Amanda never gets them as bad as she did this time.

Amanda and Meghan are scheduled for sedated cleaning in January, oh, sedation always makes me nervous, and the last time I burst into tears when Meghan went under. She just went limp in my arms and her eyes rolled up in her head, I honestly thought she stopped breathing. I put my head to her chest and checked for air flow on my face, and even though her respiration rate was very slow, it was there. Do any of you other moms get scared from sedated procedures? I may have Tom take her back this time; I do not want to scare her with my fears. I feel like such a wimp though. If only she would cooperate and let the dentist work, but she gets scared and falls off the table, closes her mouth, she just panics. He did say he has seen many children like her who miraculously change their attitudes when they reach 11 or 12, goodness; I hope that happens for her too.