Please, no more pink ribbons, breast cancer is a deadly killer-October 2013 post

When I was diagnosed with breast cancer in 2003, many very sweet and well meaning people gave me items with pink ribbons on them. That did show they were thinking of me, and I was grateful, it was a pretty hard time, no truly, it completely changed who I am as a person...  I had fitness shoes sold during October that were pink with little ribbons on them, and socks, and so many pins and key chains.

 I went to Susan Komen walks and wore that pink survivor tee and marched with all the other women who had survived, and we all cried when they talked about our sisters who did not.

I lost a body part...an amputation, people hate it when I say that, ugh please, they did a MASTECTOMY, that is not the same thing as losing an arm...I beg to differ, men leave their wives after mastectomies all the time, why, because they think they are disfigured. That amputation is so much more than losing a breast, you lose your identity as a woman, since you have had those breasts since you got nipple buds at age 8-9. By the time most of us are in high school, our breasts are simply part of what makes us young women.

They allow us to feel pleasure during sex, oh, I know, not the S word, but hey, they do.

Some of us use them to feed our babies, I did, I fed precious newborns 5 times. We had a nursing relationship for 2 years plus or minus a few months, that is 10+ years of breastfeeding. I was breastfeeding when I was diagnosed with cancer.

Somewhere around the time I lost a very dear friend to breast cancer that all those pink do-dads seemed insulting. She was an early stage gal, 90% plus survival rate, and then she found some swelling over her collarbone and BAM she is now stage 4. She did not live long after her secondary diagnosis, but she tried so hard, she researched and she changed her diet and she did everything humanly possible (which means lots of chemotherapy...) She died anyway, not because she was not positive, not because she did not try. Aggressive cancer is hard to stop, and it killed her.

Every single time I see Pinktober items my skin crawls, my Mother Laquita and my sisters in breast cancer; Sharon, Deanie, Jamie, Deb, Janice, Madeline, Perlie,  Kim, Kathy L, Kathy S; these were all women I knew and loved, I shared a breast cancer journey with these women, and none of them are alive today. They were mothers, wives, single gals, animal lovers, professional writers, advocates, and all were amazingly strong women. Their lives mean so much more than a pink wash of products in October, so very much more.

Autism and holidays

Holiday gatherings are so difficult for a child with autism, add to that some lingering institutional issues and cognitive delay of Down syndrome and a mom and dad have to be on their toes, most of the time.

Yesterday our tiny Estonian had a no good very bad day...we had Thanksgiving dinner at our oldest sons house and to us his home was welcoming and inviting, to Amanda, it was a new place with smells she did not know, with rooms she had not seen in a year and she was quickly overwhelmed, though outwardly she just looked excited.

She has items she frequently throws on the floor here; the TV remote, the phone, cell phones, toys, etc. Actually, anything sitting on a table. We watch for it, and we try to put breakable things out of her reach, she breaks things frequently, some impulse she has to break glass especially, and she will keep going back to it if it is not put away until she does knock it down or break it. Many favorite mugs have suffered at her hand... (attention seeking behaviors) Since she had a developmental leap this past year (think terrible two's), she has been so much worse about this.

Needless to say, we were very nervous about yesterday,  we decided to take turns keeping Amanda with us to prevent hair pulling, scratching, breaking things, or any negative interaction with the rest of her family. It happens often, both the grandsons were going to be there, she targets those smaller than her, sometimes you just feel like crying...honestly.

We walked through the door unloading things,  we do a pot-luck dinner, and Amanda immediately threw all our son's remotes on the floor, so daddy took her to sit on the floor with him. While he was speaking to me, his head turned away, she turned around, found a small table with a potted plant sitting on it, and she toppled it, the plant fell off and the ceramic pot shattered.

We were there for less than 10 minutes.

Daddy pulled her into his lap, she was pretty agitated, wiggling, pushing off with her feet, trying to scratch his hands, she wanted down, but she also wanted to make things go crash, bang, boom,  her eyes were rapidly taking in all of the objects she could throw off of tables and shelves. She was scheming, and it was obvious.

I took Amanda in my lap so her dad could carve the turkey, and then he took her so I could eat,  he gave her the iPad so she could calm down with her favorite app, um, that did not work. iPad on the floor. She was just beside herself. I believe that she hones in on the nervousness of others, and since she often hurts the grandsons by scratching them, their moms do not trust her, she feels it, and I do not blame them for wanting to protect their sons, I love those little boys too, and I do not want them hurt by their aunt. (If you are a special needs parent, you probably know what I am talking about, it is the reason many of you stopped attending family functions.)

Daddy went to eat, and I took Amanda to sit with me while I tried to visit with her brothers and sisters and play with my grandsons. She undid one side of her diaper with me sitting beside her, and urinated on her brother's couch. Bless our son for not getting upset, he got some pet stain remover spray and vinegar and I sprayed down his couch.

After I put a towel down on the sprayed and cleaned wet spot, Amanda climbed onto my lap and hugged my neck. She backed away and her pretty blue eyes looked so sad as she made direct eye contact with me, she gently reached out and touched my face. She hugged me again, then looked into my eyes again, she was so sad, and her non-verbal language said: "Mommy, I am so sorry".  Those times when she lets you see her and you see the confusion in her eyes and feel the sorrow, and you know she just needs you to hold her and show her you love her, that you understand her, they can break your heart because you know she does not want to destroy things, she doesn't, she wants to be loved and protected and she wants to be happy, like all of us do.

When she gets sensory overload, there seems there is little to do to calm her down, she needs time alone to calm herself, but in a familiar place, and sometimes that does not help either.. Sometimes a foot rub will, or brushing, sometimes a light massage.

Now when your little girl, who you love beyond measure, has just scratched and bloodied her sisters face or smashed the mug with the sunflowers you got your husband after he said yes to adopting in Ukraine...lovingly massaging her little feet is HARD to do. You are human and you are angry and upset too.

Patience, patience, patience, patience, you need a lot of patience and lots of LOVE and many prayers, but you rarely reach out for support from other parents, even special needs parents, because sometimes they go to judging, and you are already feeling bad enough and you are already feeling inadequate, who wants to add shame to it? "If that were my child I would..." "Have you tried this?"  Thanks, but that does not help, sometimes just hearing; "So sorry you had a day like that" is all you need, a little understanding and some compassion.

I have been a mother for over 35 years, but I have never mothered a child who struggles like Amanda, and I am learning as I go along, like any other parent. I do not have all the answers, she is a very complex child. I am constantly reading about post-institutional behaviors, and RAD and autism, some of the material helps, most does not. Likely those parents read the same books, some of the ideas work for their kids, and some don't, the same thing here...

Much of the visit yesterday involved us redirecting Amanda away from various off-limits areas. (bathrooms, bedrooms) and preventing her from hair pulling and scratching.

We got home and put the girls to bed, and both my husband and I were completely and utterly exhausted.  For once I actually fell right to sleep when I went to bed.

Today is a new day, it has to be better than yesterday, which all in all and (despite Amanda's incidents) was a good day, we loved seeing our older kids and their wives and our precious grandsons.

The best part about today? The girls can stay home and can decompress today, though Kara and Meghan do better visiting family, neither is 100% comfortable; the worst thing Kara did yesterday was to take some food off of other peoples plates, that girl LOVES her food...Meghan, who is almost a teenager, stayed in a room and watched her favorite movies.

I am taking our oldest son to Lowe's to buy him a new pot for the plant...a plant that was actually an Easter gift from us many years ago,  and this mommy gets to go and to a fabulous place here in town and paint a painting with our oldest,  my birthday gift from him.  I truly need that time away, I am really looking forward to it!

Kara's 9th birthday

I posted on Kara's blog on her birthday, 

she turned 9 on October 28.   

Kara in winter 2008, such a tiny little gal!. 

 Pictures of Kara on or around her birthday for 

every year she has been part of our family.

Kara  today.

Kara is a clever little girl, she has amazing problem solving skills and sometimes they get her into trouble. She has such a tender heart and is very sensitive to emotions. She is also very rough and tumble when playing with her sisters.  

She has an amazing giggle and her smile makes everyone around her happy! She is not one to smile for pictures though. It is very hard to get a picture of her smiling, it makes me sad that more people cannot see her smiling face!

She loves playing on the iPad and has figured out how to 

use Netflix like a pro. She prefers watching Barney to 

any other video. We tried to find her a Barney plush

 for her birthday; but they no longer make the big fluffy 

ones. I am watching a few used ones on eBay, I know

 it would make her happy to have one of her own!

Kara does not speak; she has apraxia and we are working hard on teaching her to duplicate sound. She uses sign to indicate her wants and needs, but gets frustrated when we cannot understand her. I know she has a lot to say! She fully understands everything said to her and follows directions well (when she wants to...)

We are so grateful that she has been very healthy, 

she has had some minor colds here and there, but 

thankfully nothing more serious. 

We are so happy she is a part of our family. 

Love, loss, and family; when you do not know how to say goodbye

My sister Genene died this week.

I am the ours of a blended family; both my parents were married and divorced, each had two sons and two daughters, then they got married and they had me. My father was 19 years older than my mother. My mothers newest step-daughter Joyce was three years younger than her.

Genene was 19 years older than me, her three daughters are closer in age to me than she was.

I read her obituary today; I learned she had grandchildren and great-grandchildren, I did not even know her daughters got married or had children because my sister and I had not talked since our father died in 1988.  No invitations to weddings, no birth announcements, we did not exist in each others lives. Before our dad passed away I do not think we ever had a real conversation either. We did not know each other at all.

I could say so much about why we did not know each other, I have in another post which will live forever in drafts.

I have no idea who my sister was, what she liked to read, to watch on TV, her favorite color, nor did she know this about me.

The only way anyone will ever know I was her sister will be our fathers headstone, which has all of us listed as his children.

I think I can explain the terrible empty feeling I am having now; my sister died a stranger to me. That is about the saddest statement I have ever made.

Happy 8th Birthday to Amanda!!

Miss Amanda had a not so great day. Her nose was runny, she was rubbing her face with snot and rubbing her eyes, the allergy index was pretty high!  Her mood was grumpy and well, today autism won.   Today she was pulling hair, shoving people over, scratching, crying, and raging. I just want to cry for her and with her.We plan on taking the little girls to The Croods later this week, maybe she will be happier and enjoy that.  I wish she could have had a joyous day today. (sniff)

 I was looking forward to her birthday, she has been making great strides in controlling her impulses, and we thought she would look forward to opening gifts and having a special cake. She did enjoy her cake! She did not care about gifts at all.

Happy Birthday to sweet Amanda! I hope our beloved  girl feels much better tomorrow.

Out and about

We took Meghan, Amanda and Kara to Home Depot today, I know, we must be out of our minds, doing that on a Saturday. Meghan decided to walk alongside her dad, Kara sat in Dad's basket, I put Amanda in a second basket. We needed plants for spring and some fencing for the dogs. 

We started in the plant section, I can spend hours  there, I just love imagining new gardens, and after digging up 7 dead Tea Roses, I have a blank slate.  I was gathering everything I needed for my garden and my empty pots as fast as I could, the place was crowded, not really the best place for our girls, especially Amanda.

I got the flowers I wanted, Kara pulled all the flowers and large leaves off of one of them, she tried throwing a few on the ground. Amanda kicked off her shoe. OK, nothing really terrible there. Amanda was smiling, giggling, and relatively quiet for her. I was feeling relaxed and just happy to not be in pain today, stupid arthritis can really get me down sometimes.

I stopped to look at some red verbena, and a pretty older woman made the mistake of standing near Amanda who proceeded to grab the ladies tee and jerk it and the woman wearing it towards her. Tom removed Amanda's hand, and I apologized to the woman. She seemed totally OK with the interaction, even turning to smile at Amanda. I immediately thought; "She must have someone with special needs in her family". I moved us away from her anyway, for her protection. Once Amanda decides someone needs her attention, she rarely gives up...

We had to go from the garden section to the lumber, which just had to be all the way on the other side of the store. We worry about it, because Kara likes grabbing things off shelves as we walk by, thankfully they are usually unbreakable. Today the aisles were wide enough not to offer her any temptation. We got the usual stares from other shoppers, but most people were intent on their own shopping, and I was glad for that.

We found the temporary fencing for the back yard; we need to spread Diatomaceous earth to combat ticks, the dogs cannot be near the ground, as inhaling the powder could damage their lungs. Amanda and I decided Tom could figure out what kind of fencing to purchase and went back to the garden section. She was in a playful mood so I was goofing around with her, she was making eye contact, smiling, happy, and I wanted to enjoy it.  In her zeal she began to scream, LOUDLY, and of course everyone around us stopped and stared. I just smiled at them and we kept walking.  She did continually try to grab my shirt, but I simply remind her that she needed to use "nice hands" and she would move her hands back. She is getting so much better at listening and pulling back. 

We know the Kara and Amanda can be rowdy, loud, grabby, and are prone to making weird noises, we re-direct them all day for it, but even though we had a couple of 
incidents, I was proud of them today. 

You can tell Meghan is growing up, she calmly walked beside us, only stopping to sit at the patio furniture again, she does this at any store that sells it, telling us; "Look Mom, oh so pretty".  Honestly, a girl who adores lawn furniture? Our Meghan is quirky! Nothing would make her happier than a set added to the back yard. Unfortunately, Lola and Chloe, our "chew it to pieces" Labs would destroy anything but metal furniture, and a place that has 100+ degree summer days cannot have metal furniture, OUCH! Do Lab's ever stop chewing up everything? 

I found the most beautifully done dolls today, they are made to resemble children with Down syndrome, and unlike some very unflattering depictions of previous doll makers, these dolls are simply  gorgeous!

www.dollsfordowns.org

I hope I can get one for each of my girls eventually, though I would love it if she chose different eye colors for some, our Meghan has very blue eyes, but brown hair (just like her big sister), that combination is always so hard to find.