Tuesday, September 30, 2008
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.
Sunday, September 28, 2008
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.
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 firstname.lastname@example.org
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.
Saturday, September 27, 2008
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!
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.
Friday, September 26, 2008
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.
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.
Thursday, September 25, 2008
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".
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.
Tuesday, September 23, 2008
Monday, September 22, 2008
Yesterday we went to another one of Brian's plays, this one was called "Working".For more information visit http://www.studioconnections.net/.
Studio Connections’Da Vinci Players are proud to present Stephen Schwartz’s Working. Based on Studs Terkel’s book of interviews with American workers, this musical celebrates the spirit of the American dream. The show opens for a preview performance on Thursday, September 11th, and will run for three weekends. Their last show is this coming weekend if you live in Tucson, you may want to catch it. What a great cast, they were all amazing and of course we loved seeing Brian act and sing. He is acting as part of theDa Vinci Players. Their next production is "Frog and Toad". We rarely see Brian because he works full time and also rehearses every night, so his plays are one of the few times we get to see him.
We took Meghan, Kara, and Amanda to the play and managed to keep all three relatively quiet. It helped that it was nap time for the little girls, though Amanda was grinding her teeth so loud people around us were staring. When the play was over an older gentleman complimented us for having well behaved girls. :o) Amanda even learned to clap after each act! She had a leaky diaper and wet my jeans, we were trying to slip out the side door when the older gentleman stopped us.
Eric was in triathlon yesterday in Phoenix, he said it was pretty hot yesterday.
Olympic - 1.5k Swim, 27.5 mile Bike, 10k Run
Swim time: 23:42
Bike Time: 1:18:30
Run Time: 51:15
total time: 2:37:5
Friday, September 19, 2008
Amanda is eating much more, but still so thin. She looks healthier, but her skin is full of mosquito bites, who get her despite repellents. She also adores scratching them. Her hair is growing quickly, we hope to have a style soon. She is beginning to walk with her hands held, rather a goose step kind of walk, but at least she is bearing weight more.
If you asked to read their blogs and have not received an invitation, please let me know in the comments section. A few folks asked, but did not leave their email addresses.
Thursday, September 18, 2008
I have three different fundraisers on my blog, one for our local Buddy Walk, one for my dear friend, a very special lady who helps everyone she can, and the last to help the grant agency who helped us adopt both girls raise funding to allow for more families to receive adoption grants.
I am sure folks are weary of someone always asking them for donations, I know I am, I get more than 20 a day in my inbox. I get at least 5 phone calls as well. How do you choose, who do you help, and how can you help everyone? You can't unless you are someone like Bill Gates or Oprah.
If you have been listening to the news you know that things are looking bad for America, banks closing, merging, Dow Jones down, the federal government bailing out ailing companies like AIG, FANNIEMAE, etc and maybe you are thinking that holding on to what you earn seems like a better idea than donating money to numerous causes. I know, I am there too.
But then I realize that we can help, even if it is $5, it helps, and lately it has been me that needed help for our adoption expenses, and we received so much support, and every time I look at my new daughters, I realize, we did not get them home alone, we had so much help! Still, here I am asking for help again, but not for my family this time., instead it is for people and organizations I believe in instead.
If you can spare even $5, please, PLEASE donate it to someone that needs your help, if not here, than anywhere else. The worse thing any of us can do is withhold aid to others at a time like this.
Sunday, September 14, 2008
Friday, September 12, 2008
With what we raised, we will buy this stroller for now. http://www.toysrus.com/product/index.jsp?productId=2957921 I can then return Lori's stroller to her with our gratitude. She was a life saver for me when I had to go to all those appointments alone. Truthfully they have taken their toll on all of us, the girls and I, we are so weary of going to doctors offices. We still have many appointments to come.
Since it is so hot, we cannot walk much anyway, I will still save for the jogger stroller I wanted, maybe can find a good one on Craigslist, as suggested. I just don't have lots of time to shop. I am sure everyone who has adopted two children can understand that one.
I want to thank my very good friend Carol for donating her family's products for our raffle, Rock Creek Enterprise is a new business, please check them out!
Thursday, September 11, 2008
This is just plain wrong, and shame on American Express.
"A fight is going on inside me," he said to the boy.
"It is a terrible fight and it is between two wolves."
"One wolf is evil and ugly: He is anger, envy, war, greed, self-pity, sorrow, regret, guilt, resentment, inferiority, lies, false pride, superiority, selfishness and arrogance."
"The other wolf is beautiful and good: He is friendly, joyful, peace, love, hope, serenity, humility, kindness, benevolence, justice, fairness, empathy, generosity, truth, compassion, gratitude, and deep VISION."
"This same fight is going on inside you, and inside every other human as well."
The grandson paused in deep reflection because of what his grandfather had just said. Then he finally cried out; "Oh Grandfather, which wolf will win?"
The elder Cherokee replied, "The wolf that you feed."
Which wolf do you feed?
Wednesday, September 10, 2008
Tuesday, September 9, 2008
The Buddy Walk was developed by the National Down Syndrome Society in 1995 to promote awareness and inclusion of people with Down syndrome. The Buddy Walk has grown from 17 walks in 1995 to more than 260 walks were held in 2005. The goal of the Buddy Walk is to promote understanding and acceptance of people with Down syndrome.
Whether you have Down syndrome, know someone who does or just want to show support, come and join the Buddy Walk. Every step we take will be a celebration of the accomplishments, acceptance, and awareness of hundreds of thousands of people with Down syndrome.
Sunday, September 7, 2008
The cooler has had so many issues the past 3 weeks, we needed a new motor, the squirrel cage is squeaking and the bearings need to be replaced, and it the electrical cord keeps coming undone. Now the pump stopped working and everything got moldy in there. I realty truly wish we could get air conditioning, maybe in the winter when the prices go down? We also have needed a new heater for a few years, thankfully we only really need it at night December through February. We just put up with the house being in the 60's. We don't roast and we don't freeze, but we sure are not comfortable...
Things that need to be done?
Laundry, every day, all the time, but I wait to do most of it on the weekend when Tom can help watch the girls. Our laundry room is outside and it is HOT out there right now. Amanda thinks sitting on hot pavement is fun, her skin doesn't, I am wishing for 80 degree days right now.
Mowing the lawn and trimming the trees. Well, last weekend the lawn mower died, Tom could not get it to start, it is a horrid old thing that spews smoke, so perhaps we need another, greener mower anyway. We need trimmer line for the weed eater, we both forgot until we went to use it. The yard is overgrown and looks awful.
Going through junk mail, I don't know about you, but I am so weary of mail I did not ask for, offers for CC, and insurance and catalogs for things I would either never buy, and don not need or want. It all goes into the recycling bin, most before I even walk in the house. I cannot abide junk mail. What a waste of resources too.
Watering the garden, I always wanted a sprinkler system, but gosh, who has time to dig up the yard and install it? And no, we could not afford to have someone else do it. So I use soaker hoses and a sprayer. Helps me get the sun I need daily. watering is something that has to be done all the time, my family killed a lot of my plants when I was in Estonia because they thought they watered enough. (sigh) I need new plants for this winter.
Cleaning out closets Something I think should be done when it is cooler. They are a mess, Meghan likes to play in them. She takes numerous things and places them in bags, she has numerous bags which she stashes in weird places. Not to be indelicate; but she had my favorite bra in one, I could not find it for months, it was under a crib, in a bag. I emptied all her bags and found many missing items, including cups, spoons, hairbrushes, and undergarments? Wonder why she collects those things?
Cleaning off the carport We had 5 cats at one time, they liked to sleep where we stored some things we needed to take to storage, all of those things are on the ground behind a table. The carport is a mess, it is too hot to clean it right now, so we wait for cooler weather. (less spiders and other bugs around) It HAS to be done soon, the neighbors will complain!
Getting size 3 girls clothing out of storage These are for Kara, goodness, but she has grown so much, these are all fall-winter things, so she will be well-dressed. Meghan grows slowly and does not need a lot of things, I got her 4 outfits last week, they should mix with her existing clothes for the fall, if she grows over the winter, she may finally fit into size 6 clothing at age 8! Amanda has plenty of things to wear for winter too.
That was just a few of the things we need to do, all we did do was laundry. Pounding heads, sniffles, and malaise made anything else possible, though I did water the poor plants outside.
Tuesday, September 2, 2008
I warn you, I believe it is one of the most upsetting things I have read in a very long time, disgusting, inhuman, and heart-breaking. I know that at times we wish we did not know anything about what happens elsewhere, but I believe as humans we HAVE to care about the whole world and her people, God's people, and not just those in our little circle of friends, workplace, congregation...
Read it first, and then read welcome to Holland below, and wonder if perhaps we need to write a new poem for parents, I for one will never read it again in the same light.
WELCOME TO HOLLAND
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.