Sunday, November 30, 2008
You have to love these amazing clothes, I know I do, makes me want to dust off my machine, remove my stored patterns, and sew again. Since chemo, I find reading the direction to make outfits is harder, possibly from the brain damage and short term memory issues associated with Adriamycin? It is not severe, I mange life well, but this particular thing is difficult for me now. It is maddening!
Anyway, as usual, click the link to enter, you have until December 2 to enter, hurry!
I was rereading this blog entry from a fellow adoptive parent:
http://gathermychildren.blogspot.com/2008/10/coleen-my-lifes-inspiration.html and it got me thinking about Americans and their ideas about disability.
I have also found this article READ HERE and have to say, this woman is speaking for more women than we think she is, I completely disagree with her and find her beliefs horrendous and well, inhumane, she is an advocate for special needs kids too, what does she advocate for? Euthanasia?
Sha writes: "My belief that certain foetuses would be better not coming to term has nothing, logically, to do with my belief that everything possible should be done to help babies who do come to term and are born among us to share our imperfect world. " So you can see my point...
After you have read Linda's blog entry, think about how we handle Down syndrome today. The first thing doctors tell parents who have a prenatal diagnosis is "Well, you can terminate and try again for a healthy child" or ” If you terminate now, it will be within the first 20 week rule" (don't think for a minute that they stay within that, they abort babies who are late term too). I wonder how many give the other options? Do they put the expectant couple in contact with parents who have children with Ds? Do they tell them about support groups? Do they tell them about the waiting list of 200 plus families who want to adopt a child with Down syndrome? From the moms I have spoken to, the answer is a resounding no, they do not tell them any of the positive aspects of choosing LIFE over death for their baby. They fully expect the parents will "want to get rid of" the defective infant before it has the misfortune to be born. We know this because the abortion rate is above 90% for babies with trisomies, spina bifida, and other genetic abnormalities.
Rationally we can assert that the medical profession practices an extreme form of bioethics; they decide who has the right to live and they impose their will on shocked parents and scare them with gloom and doom statistics. I know this is true, I have too many friends who went through it, and I can still hear the pediatrician telling my husband and I to leave Meghan with them and CPS would take her away. That we needed to save ourselves from a life with a defective baby, needed to save our children from the horrible burden of caring for Meghan after we died, after all, we were OLD and would die before Meghan. Was that fair to our kids, WAS IT?
Where are the Right to Life factions when genocide is being exacted upon these children? Who decides their lives are not worth saving, and WHY do people put dollar signs on their lives. I have heard the people who want to protect their wealth whine that these kids are a drain on society. The say the children take taxpayer money and waste it because they do not contribute to society. (They say the same for welfare recipients, and such, actually, they say this about most of us who are not in the upper 10% of income).
After all wealth is more important than the life of a precious child, isn't it, and why would any sane person want to waste their hard earned money on useless and expendable children (and adults)? (this is NOT my belief, I am simply repeating what I have heard in the last 8 years) I hear them speak, they have such conviction in their warped beliefs, they have moral outrage that someone would part them from their hard earned money, I admit, they sicken me. I guess I am supposed to try to love these folks, but I am angered by their egocentricity and heartless beliefs. I want to shake them, I want someone to do a Scrooge on them and show them the harm they do to others. They need to open those eyes shaded by greed and selfishness and see that there are indeed others in the world just as worthy as themselves of occupying it.
I want them to see my beautiful girls and see HUMAN BEINGS WITH POTENTIAL and not just their disability. I know this will never happen. I see the many looks of dismay and disgust when they see us out with our kids. Some folks are very sweet, and thank God for meeting up with them, but others are just so vile in their disgust at seeing "abnormal" children. I shudder when I feel their anger directed at my kids and I know, should they ever have the power, they would do as Hitler did, and exterminate my precious children, and probably myself as well, after all, I had cancer, I too am defective, right?
So many people have told me that these countries in Europe are barbaric for the way they warehouse so many children. They puff out their chests and proudly announce that America is so much better, and I gladly burst their bubble, I say; "Sure, we have early intervention, we have inclusion in schools, people with Down syndrome have jobs, but we abort 90% of them, so how in the world are we better?" They always say they had no idea that happened, and I bet they are mostly correct; many people simply do not know that there is a movement to eliminate Down syndrome births. With the new prenatal testing in the first trimester and the ACOG announcing their excitement, that such a test exists, well, what other purpose does a test like this serve? Do you think it is to help prepare the parents as early as possible for the birth of their children? Thankfully a new law passed the requires doctors to give families ALL of their options when they receive a prenatal diagnosis, thank God for that.
I have prayed about this issue and I will continue to for the rest of my life. I know there are thousands of parents who understand how I feel, we all feel such sorrow over this, every so often I get mad about it and need to vent, today was my day for that.
Amanda's blog was found through a search for:
nephroblastoma Fundraisers. Yes, she had that ultrasound to make sure she did not have a kidney tumor, how sad that search pulled up Amanda's blog.
adopt estonia blog. well that makes sense, but we are the first on that search, surely we are not the only family with an Estonian adoption blog? I saw Mel's a few spaces down too!
Kara blog was found through:
cast dorm her orthopedic Hmm, OK, what does dorm have to do with it, but orthotic makes sense.
Meghan was found through these searches:
Survivor guilt syndrome Whoever you were, I am sorry you are going through this, I will pray for peace for you.
swimming teachers rules. I hope you found what you were looking for, I think Meghan's swim teacher has a long way to go to regain her trust, he scared her by taking her out to the pool and keeping her there despite her cries of terror. Now when she sees him or the pool, she runs the other way.
'down syndrome and watery eyes'. Oh yes, such a common issue with our kids, often from clogged tear ducts.
natural cold remedies for babies with goopy eyes. I hope they found a solution.
We certainly do not get the traffic Renee does, we love her blog too! Most new blogs I find are through others peoples blog lists, ours are not on very many peoples, so we are rarely found that way. Oh well, I never was a popular girl in HS either. ;D
Friday, November 14, 2008
Wednesday, November 12, 2008
Just a reminder, you can donate to GOAF in the link at the top of the blog. Please consider helping another family afford adoption! I know we are all hurting for money, especially this time of year, but think of other little girls like Amanda and Kara, or sweet little boys waiting for forever families, and the only thing preventing their adoptions is LACK OF MONEY to pay for the adoption fees.
Help a families adoption dreams come true, donate today.
Oh my goodness, this is the sweetest costume ever, wouldn't my girls look sweet in it! Click the link to enter the contest.
Tuesday, November 11, 2008
1. I thought I was born in Winslow Arizona until last year, when I finally got my birth certificate for Kara's adoption paperwork. I had never seen my birth certificate until then, and entered school and got married using a baptismal certificate instead.
2. I used to dream the exact same dream every night for months, once the issue causing it was resolved, I would begin to dream something else. Most notably was the dream of a huge green Gargantuan coming after me in the 3rd grade...I do not remember my dreams anymore, maybe that is for the best. LOL
3. I am one of 9 children, 4 who were born to my father and his first wife and 4 who were born to my mother and her first husband. I am my father and mothers only living child together, my mother lost my brother Jacob Edward in the 6th month of pregnancy. My oldest sibling in 77 and the closest to me in age is 51.
4. I am a third generation Arizonan, my fathers family came here shortly after they arrived in Utah, my great grandmother was a pushcart Mormon.
5. My American ancestor (Father's side)and great great (etc etc) grandfather Samuel Smith fought in the Revolutionary War. My fathers family came to America early in it's colonization.
6. My maternal grandparents provided for their family as migrant farm workers during the Great Depression. My mother was born in a cornfield, likely in a small house in a cornfield...family lore, you know how it goes. Our branch of the Briggs family had initially settled in North Carolina in the 1700's.
7. Ancestors from both my fathers and mothers families fought in the civil war, most of my dad's were Union and my mothers were Confederates. Explains some things...
Lately I have been very interested in geneology, my brother and my maternal Aunt have researched maternal family extensively, I know my fathers family has as well, but it would be fun to do some myself.
I will choose my seven folks later, it is dinner time.
I decided to use this picture of Meghan to enter the contest. You can enter here
Friday, November 7, 2008
Thursday, November 6, 2008
Wednesday, November 5, 2008
We did get to spend time with my dear friend B and got to see her mother, who has always been very kind to my family. My hearts aches for them, it is so hard to say goodbye to our loved ones.
I also got news that a fellow breast cancer survivor and a dear friend had "THE TALK" with her oncologist. The Talk; It is time to get your affairs in order" ( Oh yes, I remeber the talk with mom, two months before she said goodbye for the last time in this plane) K is a remarkable woman, even though she has had cancer treatment weekly for two years, she has continued to do everything she did before. She has energy, she has an incredible zest for life, she is a working mom, and she is an American woman living in Japan, far away from her extended family, she is a mom of 4. She is also a fellow BCSN sister and I truly love and admire her, and I am MAD that her cancer continues to fight chemo, though she is not mad, but calmly accepts this news with the grace she has shown all along. I know she would hate it, but she is my hero, I so wish I had half the class and faith she shows daily. I know K will be with us a very long time.
I just heard that Michael Crichton passed away today from cancer, he is one of my favorite authors, I am in shock, I did not know he was ill. The first book I read of his was called Five Patients, I went on to read Jurassic Park, Sphere, Congo, I adored Timeline, even had the audio book, and many others. He will never write another book, and that makes me very sad.
I think am wallowing in survivor guilt today, Ed should still be here, my friend should be in remission, and here I am living and thank HF, doing well. No, I do not want a recurrence, yes I want to live for decades, it is so hard to explain how someone passing from cancer affects those of us who have had cancer, but "There but for the grace of God go I" is always playing in my mind. Cancer does not care what you do to prevent it, it will grow unheeded no matter what some folks do. A horrid cancer resistant to everything, you may tell me, God is calling them home, but I will tell you, not everyone is ready to go when they are called.
From left to right, Me, Julia and Terry, who shaved his head around the time I lost my hair, I was glad not to be the only baldie in the family.
Yes, we can survive cancer, but it leaves it's mark on your soul, and it shows you how short life truly is. When we finish treatment; for me it was just surgery and chemo, we cherish every little thing from that point forward, the wind in your face, a butterfly landing on a flower, the smell of rain, a child's giggle, hearing your daughter sing, seeing your son in a play, feeling your daughters arms around your neck, talking to your sons about ANYTHING, and bringing two precious little girls into your home and your heart after you thought you may not be there to see your oldest daughter graduate. Just one second of life is precious, the world even with all the sadness, is truly beautiful.
The immense gratitude you feel for just one more day, the swelling gratitude in your heart the incredible joy, it shapes how you look at everything in your life. Right after my cancer treatment ended I remember feeling so very grateful just to wake up each day, I would pray, "Thank you God for the gift of this day". That never really went away, but as I get busy and cancer is a bit in the background, I do not pray in gratitude enough.
Today it was renewed for me, seeing Ed's family gather to remember him. However, it also made me remember planning my own funeral as I had read too many studies that told me, women with my cancer subtype did not survive past 3 years. I picked the songs I wanted to be sung when I would be in my room alone, too tired to move... I picked a song from my old church; "I Stand All Amazed", though it had been many years since I have attended the LDS church, the teachings and the music are a part of who I am. I can picture my mother sitting next to me in Sacrament meeting singing in her clear sweet voice, this beautiful song always brought tears to my eyes, and as I lay in the stupor following chemotherapy, it would play in my head and heart, and I would feel my mother next to me, comforting me. I knew should I pass, that this would be one of the songs I would want to be played to comfort my family.
Lord of the Rings is one of my all time favorite movies, and when I the last of the three was released in December 2003, and I heard Into The West, I knew, it too would be a song I would want in my funeral. I was not being morbid, but I was trying to prepare myself, my cancer was serious, something called triple negative breast cancer, and in the 5 years since my diagnosis, I have lost three friends with the same pathology.
I thought I understood cancer and the emotional damage it wrought in our lives, I lost my mother after she fought it for 4 years, she was barely 45 years old, I was 16, when she left me, I truly was alone. My father lost in his own grief and guilt, my sisters far away, one who just gave birth and missed Mom's funeral, and bless her heart, she still feels grief over this, another living with our aunt 100 miles away. Nothing would ever be the same again for any of us. Until I found my breast tumor November 9th 2002, I thought I knew everything about breast cancer, as a daughter who lost mother, but when I felt that lump, I realized, I knew nothing about cancer. The floor fell out from underneath me and I knew in an instant, it was not a harmless cyst, this was something that would challenge me for my life.
I tried for months to deny this thought, the doctors agreed, it was likely a deep infection following a massive breast infection, a lumpectomy April 15, 2003 showed we were all wrong.
If you have never had cancer, would you know how it feels to lose a beloved friend, a sister really, or how you feel when you survive and they do not? Until you walk in my shoes, or those of the millions of people before me, you cannot imagine the pain of loss or the bittersweet joy of survival. My life, me being alive and doing well, is truly God's miracle. What having cancer and surviving has done for me is simple; I no longer tolerate hateful attitudes, immense greed, prideful gloating, or unkind actions. I cry more easily, I feel more deeply than I did before, and I was an emotional woman to begin with so I am usually found weeping over many different things daily. I get hurt more easily and I truly cannot understand why anyone wants to hurt another, how can they, when the life we are given is such a gift? I want to be, as Gandhi said, The Change I want to see in the world. This quote is posted before me at my computer desk, to remind me of my purpose in the life I was given back.
In the 70's Richard Nixon declared a war on cancer, today, the cancer rates have increased, and survival is about the same as it was then. We are losing that war, do not let ACS tell you differently, all they did is include pre-cancers into their data to make the numbers look better, statistics, who can truly trust them? Maybe we need to FINALLY do what we can to prevent it in the first place, beginning with our environment, the foods we eat and the products we use. Maybe our children cannot have this threat in their lifetimes? We can pray it is so.
Monday, November 3, 2008
Had I not taken the time to say hello,
Yesterday would have turned into today
Today they are gone...
Wouldn't it be nice if we all knew tomorrow would be here?
JUST FOR TODAY,...
We sat on a cement slab and watched people come in, many folks were bringing in early ballots for tomorrows election, somehow I feel that is unsafe, like their ballots may accidentally become lost, or whoops, destroyed. I don't know why, but early ballots make me nervous.
One of the early voters stopped short when she saw Kara and Amanda and she told her friends goodbye, she wanted to talk to my little beauties. Of course Meghan came running to be admired too. This very sweet woman knew the girls had Ds because she had a daughter too, a sweet teenage daughter who had passed away 12 years prior to our conversation. Her daughter was born with AV Canal and Tetrology of Fallot, she said she was very frail and got sick often and passed away from a lung infection. It made me so sad for her, it was my fear when Meghan was born that I would lose her too soon, old information planted in my head from growing up before they repaired heart defects. This sweet Mom was so tickled to see my three girls and honestly adored them, I think it was good for her to see them, I hope so. I know I enjoyed talking to her. It was such a wonderful change to some reactions we get.