Post one of 31

OK, officially it is still September 30 here, but it is October 1 somewhere. :o)

I thought I would post today about expectations for my girls.

I want for all of them, all 4, to have happy and fulfilled lives. Being somewhat old-fashioned; I would like them all to have a committed relationship, even getting married. Yes, getting an education is very important, being strong and able to take care of themselves and others is also essential.

I am aware that Meghan, Kara and Amanda may have more challenges than Julia, I accept that in order for them to be independent, they will also need support. We knew this when Meghan was born, we accepted it when we decided to adopt Kara and Amanda. It does not mean they can't accomplish goals.

I want them all to know how to live and thrive once we are no longer here to guide them, for all 8 of my children to take care of one another and to never drop out of each others lives just because their parents are gone.

I would wish that in their future my girls with Ds will be looked at as whole and complete women, and not their syndrome.

It has been a long day, I am tired and ready for bed. Please pray for Amanda, she is facing some more testing, I know she gets so scared when she has doctors standing over her. See her blog for news of today.

Swimming lessons

Forgot to mention that Meghan has finally begun her swim lessons. They are at a great therapeutic pool and the teacher is a friend of Brian's I took some pictures of her first day, but they got erased, whoops.

She has 25 more lessons, so hopefully by the end of the session, she will develop some skills. Once she is used to her instructor, I will take Kara and Amanda in the other pool for some fun of their own.

Still working on her music therapy, we do not want the authorization to run out before she even gets to participate.

Just have to say

I removed the first part of this because it became known to me that someone thought I meant them, well, I meant people in general. I have a program that tells me who visits the blog and when, and I know who and why this was relayed, so to them I say, I am sorry, but I do stand by what I said as a general concept. Ego is ruinous to relationships, and the need to control everything can hurt many people. Trust goes both ways.

I learned a while ago, we must not put all our eggs in one basket. When I was diagnosed with cancer, my breast surgeon told me he thought I had IBC and needed to have immediate surgery. I trusted him, heck; I was scared and just wanted the cancer out of me. So I had a lumpectomy and sure enough, I had cancer.

After my mastectomy, which was 3 days after the lumpectomy, I went on-line to research IBC. It has a very specific treatment; chemotherapy, if your are HER2+ they will use Herceptin, then surgery (mastectomy, usually bilateral, but often unilateral), more chemotherapy, and then radiation and finally Tamoxifen or an aromatase inhibitor if you have estrogen receptor positive cancer. It is grueling, it has to be, IBC is aggressive and often misdiagnosed as mastitis so it is usually advanced before is it diagnosed, it has a lower 5 year survival rate than other stage lll IDC or ILC.

I was furious with my surgeon because what he did to me was condemn me to a quick death. IBC should not be cut into; it causes it to spread quickly. I cried for the first time and felt real fear that I may not survive cancer because of him. When I met with him for surgical follow-up, I literally threw the sheets of paper about IBC at him. He said "You do not have it" and that was followed by, "Stay off the Internet, let me take care of you, the Internet is full of misinformation". Well, I did not heed his edict, and I am glad I did not, because I believe my own research and the course of treatment (and mastectomy, chemo and a second mastectomy) I chose saved my life. A year later my oncologist agreed and told me to continue what I was doing, the surgeon was very happy I was "still with us" and did not have a recurrence, and he recanted his statement about my researching on the Internet, and said he was glad I was an "informed patient". I won't go into everything here about what I chose to do or not do, if you would like to know, email me at kkbl7befit@yahoo.com

I will tell you that I knew with every fiber of my being that if I continued on the course the oncologist set for me, I would not be here right now. I knew what I had to do, and I did it, despite his objections. I believe I God directed me to stop the rest of Chemo and to forego radiation, his voice speaking to me in the stupor I was in, in the near coma I fell into after the infusions of Cytoxan and Adriamycin. He knew two little girls were waiting for my family, for me.
After confronting the breast surgeon with the research I had done and him he saying I did not IBC, I found that I had a hard time trusting him and did not feel better about my misdiagnosis. I was not until I was allowed to view my cancer slides at the pathology office that I found peace of mind. I did not have skin invasion, or clumped nodes, and it appeared I did not have IBC, but the pathologist also said, he could not confirm that 100%. Micromanaged my treatment, you bet, I wanted to LIVE, and it was not because I did not trust in God, but God gave us brains to use to help us in this life, so we have a duty to do so. Empowerment, taking charge, being part of the medical team you HIRED to help you beat cancer. You are not something they work on, but SOMEONE they work with. That is my belief, which is how I live now, and how I worked to survive cancer. Will it come back? No guarantees, none of us are guaranteed our tomorrows, but I am here now, yes thank you God, I am.

I will say this, cancer, adoption, buying a house, or anything in our lives which is more complicated than just we can deal with alone needs to be researched, we simply cannot trust one source as the be all and end all of knowledge. When we do a research paper for school, are we allowed only one source? No, and the same should hold true for everything important we do in our lives.

If a person or group ever tells you listen to them and no one else, run the other way, it is folly to do so, sure we need to have faith, but maybe the faith should be in ourselves to find the whole truth. Do not let fear direct you in your life, have faith that God will lead you where you should go, if it feels wrong he is talking to you, if you are uneasy, maybe God is trying to tell you something. Use the intuition you were born with, and have the faith in yourself to listen to your heart.

October-the very special reasons why I love it

Julia and Brian 2001

My oldest and first daughter was born in October. Julia will be 16 this year, I can hardly believe it. My excitement and that of my friends could hardly be contained when the ultrasound showed I was not having a fifth son, but my first daughter. :o)

Happy birthday Julia!

Breast cancer month, most of us who have survived it do not like the things they do in October. The pink M and M's, all the products sold, pinks shirts, shoes, pants, you name it. I and my survivor sisters have friends who cannot afford house payments or food because cancer treatment is so expensive. Instead of donating money for research this year, find someone going through treatments and spend money on a grocery store card for them, or take them to a movie, or out to lunch, take them lunch to their home, but please do not throw money away on pink socks where $.02 cents goes towards research PLEASE, help an actual cancer patient.

Meghan and I 2003

I am grateful that I am one of the lucky women in remission, it is such an incredible gift and I do not take any second I have for granted. What we have done; by adopting our two daughters, means so much more to me now than it would have pre-cancer. I am going on 6 years as a survivor, and I thank God everyday when I wake up and I am still doing OK.

For 6 years I got to celebrate having a very special little girl with Down syndrome, and this year, when we go to Buddy Walk, we celebrate having 3! Praise the Lord. Life gets busy, we rarely sit down for long, but we are the luckiest parents, we have 8 children whom we love very much, all unique and special, all gifts in our lives.

FALL, oh thank goodness for fall, it means the end of sweltering days, the beginning of cool nights and another growing season for us, I am hoping to help my roses bloom this fall, I can't wait to see their beauty fill my yard again.

Kara and Daddy in Ukraine November 2007

Kara turns four October 28Th. She gets her first birthday cake as a Levario, and she gets to open presents and have lots of attention from her brothers, she adores her brothers. My special little Kiev princess, I hope her family in Ukraine know how much we love and cherish her.

I enjoy Halloween, I like seeing kids dressed up and happy, and Julia adores it, I think she likes it better than her birthday! Getting candy from our neighbors is fun too, I suppose we will take the little girls to the same 10 homes we do every year, just enough candy to last a few weeks, and then they can have fun looking at the kids in their costumes. We think Meghan would be a cute pixie or fairy, Kara a Pumpkin, and Amanda a Monkey! I know many folks have issues with Halloween, but we do not... :oÞ We have fun dressing up and do not think too hard about anything else regarding it.

House OKs Bill to Reduce Abortions on Down Syndrome Babies, Heads to Bush

by Steven ErteltLifeNews.com Editor

September 25, 2008
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Washington, DC (LifeNews.com) -- After recent Senate passage, the House of Representatives on Thursday approved legislation to help reduce the number of abortions on babies who have Down syndrome or other conditions. The legislation is headed to President Bush, who is expected to sign it into law.
Senator Sam Brownback, the lead sponsor of S 1810 in the Senate, told LifeNews.com he's elated by the news.
“Passage of this bipartisan bill in both the Senate and House is a great victory for expecting parents who learn that their unborn child may be born with a disability,” he said.
“Currently, 90 percent of children prenatally diagnosed with Down syndrome are aborted, and that percentage is similar for children prenatally diagnosed with other conditions such as spina bifida and cystic fibrosis," Brownback explained. "These numbers are much too high and suggest that we as a society are not doing everything we can to protect every human life, at every stage.”

S.1810 now heads to the President’s desk to be signed into law, and Bush is expected to do so soon.

Pro-life advocates have been worried about the high percentage of abortions as doctors leave parents with few options when confronted with a disabled unborn child.

The legislation would require giving families who receive a diagnosis of Down syndrome or any other condition, prenatally or up until a year after birth, pertinent helpful information.

The information would include facts about the condition and connections to support services and networks that could offer assistance in raising a disabled child.

The plight of Down syndrome babies has received significant attention thanks to Alaska Gov. Sarah Palin, John McCain's running mate, who gave birth to a baby with the condition earlier this year.
http://www.lifenews.com/state3150.html

The Prenatally and Postnatally Diagnosed Conditions Awareness Act would provide for the expansion and further development of a national clearinghouse on information for parents of children with disabilities, so that the clearinghouse would be better equipped to assist parents whose children have recently been pre- or post-natally diagnosed.

The bill also provides for the expansion and further development of national and local peer-support programs. The bill also calls for the creation of a national registry of families willing to adopt children with pre- or post-natally diagnosed conditions.

In a rare show of bipartisan support, Brownback is working with pro-abortion Sen. Ted Kennedy of Massachusetts on the bill.

“It is difficult, sometimes overwhelming, for expecting parents to receive news that their unborn child may be born with a disability,” Brownback said.

“This legislation will help parents receiving such news by supplying them with current and reliable information about the many options available for caring for children with disabilities," he added.

Solo and ensemble night-Musical Theater

Julia before the program
Julia singing last night, she is a soprano, and her chosen song was from
Jesus Christ Superstar "I Don't Know How To Love Him".

Our attempt at getting a family picture taken last night. LOL, Amanda was crying, Meghan would not look at the camera, neither would Kara, and well, I am not loving the picture of me, but then, I never like pictures of me, so...Julia and Tom look really good though. Anyone else feel 25 and look older too? That's where I am right now. :o)

All of our older children are into music, Fred plays the Viola, and played in Tucson Junior Strings, Terry was in marching band and played Coronet and Trumpet, he also sings and plays the guitar. Eric played cello and viola, but he is more into sports; swimming and triathlons now. Brian played so many instruments in marching band, I can't remember all of them (sorry Brian); but I know he played the Tuba and saxophone for a while. He was also in theater in school and now acts in plays all over town, both dramatic and musical theater. Julia plays the violin, was in Tucson Junior Strings, and is now in chorus and musical theater.

Meghan adores romantic comedies, her favorites right now are 13 Going on 30 and the Princess Diaries series.

Kara and Amanda do not have favorites yet, but Amanda tried her best to sing with the kids last night, we are teaching her the meaning of Shhhhhh. Kara loved the performance too, and clapped enthusiastically. Amanda is learning to applaud too. Meghan sat in her chair and sulked because daddy and mommy were holding her new sisters and not her. Ah well, we are all adjusting to our new life, Amanda has not even been home 3 months yet. She is a trooper though, she did get overwhelmed last night after the hour and 1/2 show.

There were two girls with Down syndrome in the show, one sang well, the other was so pretty, but shy and did not sing loud enough for us to ehar her.

The girls today

Hey Mom, take my picture
Who me?

Meghan in the front yard

Amanda playing outside

Kara at school-"reading" book

Goofy little girlie

Amanda coming to say hi

On our way to school

Kara at school