Forgive and forget?

My heart is pretty heavy today, happenings of the last week have wounded me; re-opening old wounds. Through this journey into the past, I realized a few things; forgiveness is harder to do in completion than we think, and forgetting is easier, isn't it? Well, apparently not.

 I had all of these feelings put away in little boxes and tied with black bows. They looked tidy and I thought that they effectively closed chapters in my life book. I had many justifiable but negative emotions that I tried not to feel post-adoption, I had a very dear friend who let me talk through the pain and the betrayals and I looked at the two new daughters in my care and I tried to let go. For their sake, for my family's sake. I HAD two daughters, not the two we originally set out to adopt, but my feeling was;  if they were meant to be ours, nothing would have stopped that from occurring. I had to believe both precious girls were with the families intended for them all along.  The two beloved daughters in my care were meant to be mine. I was able to pray for the other families and be grateful they gave the two girls I loved from afar a family. It did not happen overnight, but it happened.

Let it go, move on, but does anything ever go away completely, I learned this week that sometimes it does not, nor should it, I guess.  How can we grow and improve ourselves if we do not allow the hard times to define us as much as the good ones?

I saw this week that anger, even if it is justifiable feeds on the soul like the cancer it is, and it can change how a person views the world. It shapes every interaction because it consumes every fiber of our being. If you are living in anger, it is so hard to feel love.

Life after Triple Negative Breast Cancer-one thing I have to say about breast cancer awareness

Triple negative breast cancer; read about it here: http://www.breastcancer.org/symptoms/diagnosis/trip_neg/behavior

 I rarely visit my old email address, when I do, I realize much of the email I get there has to do with breast cancer and health issues; Mercola.com,  supplement companies, Medscape, PubMed, TNBCF, FORCE,  Susan Love, Susan Komen....for a very long time my life revolved around breast cancer.  After my mastectomy I was sitting at home recovering and frankly going bonkers,  I was used to working. I had to heal from surgery, so no work, which for me was teaching fitness classes, I had nothing to do but think about CANCER...BREAST CANCER... I HAVE CANCER.... my poor family and friends, I went into research mode, there are some websites (survival rates anyone) that you should stay away from, maybe completely, but at least not that first week after the devastating news!

The oncologist appointment had not happened yet, they waited until after the pathology report came in to assign me one of those! After trying to talk to numerous people about my diagnosis and being dismissed with "God will heal you" or "You will be fine; my sister, aunt, mother, best friend, etc had cancer and she is fine, dead, disabled..." I decided to search for support online, I belonged to numerous Yahoogroups, and made good friends there!  I found an inactive group and said hello, three people responded, but in a way, I knew we could have a good talk!  I ended up moderating that breast cancer group after the existing leader bowed out.  It grew quickly and before we knew it, there were thousands of posts a week. What a tremendous life-line for all of us.

I met some of the most courageous, generous, kind (and sometimes sad, grumpy, and world-weary) women on The Breast Cancer Survivor Network.  We helped each other through a terrible time; we cried when newly diagnosed women said hello the first time, we cussed and railed at how unfair it was, and we GOT MAD because it was safe to do there.  We laughed at life with no breasts and prosthetic mishaps, we cheered when someone finished treatment, we prayed A LOT when their cancer "came back", and we said heartbroken and tearful goodbyes to women we loved like sisters when their tired bodies could fight no more. It still hurts that they are no longer here. Some of us still talk, some have moved on; when we lost three beloved members in quick succession three years ago, I think we lost heart.

Facebook gained huge popularity around the same that our support group fizzled out. It has never been able to build a community like we had then, despite groups there, there is something that feels less safe on Facebook.

I thought my life would always revolve around breast cancer and researching every new miracle cure out there. If an article pops up, I read it, but I no longer feel compelled to KNOW EVERYTHING.  Life moves on, and my life is so full and I am more grateful than words can convey that I am a 11 year survivor of TNBC.

I am different than I was before cancer entered my life, I can no longer teach my beloved fitness classes, for me, it was not JUST a job, but a calling. However, my poor body cannot handle the stress of those workouts now, instead of making me feel healthy, I got sick more often, I was weak and tired all the time while teaching post-cancer, it literally meant I spent the next day in bed if I taught a class the day before, it no longer improved my life, but it was so hard to cut back.

After our adoption in Ukraine; I quit teaching entirely, and now I have the energy for everyday life again!  Not teaching means I am not a slender person any longer. My poor arms wiggle and jiggle, LOL, the horror of it! (that is lymphedema for the most part, but still) My abs are softer and my waist bigger, sometimes I look in the mirror and do not recognize myself! The way I think, eat, walk, sleep, etc, all changed after cancer BUT I am still alive, I may be different in body and mind and spirit, but my capacity for love has increased, I am so overly sentimental now and cry at sad movies, I used to think I had to be tough and not show emotion; now I do not care if anyone thinks I am weak because I FEEL things deeply!

My doctors thought I would not survive the year after chemo, and when I did, they thought I would be gone in 5, they checked incessantly for cancer lurking in my body, to them, to me, my being alive was a bit of a miracle.

Cancer changed my life, for better or worse, I am who I am now. I am OK.  To all those survivors out there; I am so happy we are still here! To those just beginning a cancer journey; you will learn you are stronger than you ever thought possible, people who you did not think would help you, will be there for you, others may leave out of fear, love them and forgive them if you can.

My Mom

 This photo of my mother showed up on my sister's Facebook page. I had never seen it before.  When I thought of my mother the past 39 years since her death, I remembered her beauty, her grace, her sense of humor, her loving kindness to all people, and the intense sadness that crept into her life occasionally...depression.

When I was 12, my mother was diagnosed with late-stage breast cancer.

Her disease was so far advanced they had to remove her entire pectoralis muscle when they took her breast. The procedure, which is rarely done in the 21st century was called a Halsted Radical Mastectomy.  They had promised our mother they would wake her up if it was decided they needed to take her breast. They failed to do that.

Halsted Radical Mastectomy

My father brought my sister and me to the hospital to see mom after her surgery, she was wearing a brave face and as always, it seemed she was worried more about us than herself.  She had a large bandage on her chest, she had not seen under it yet.  I honestly do not remember when the doctor came in, I was terrified for my mother, she had never been really sick before, and my father was not known for his sympathy, empathy, or loving nature. In essence, he was a man mired down in anger and was so dissatisfied with his life, he was unkind to all of us.  I and my sister had to face our fear for our mother with no adult telling us everything would be OK.

At some point in our visit, our mother pulled the bandages away from across her chest and saw that her entire breast was gone.  The look of shock on her face is one I will never forget, she said "You took it, you promised you would tell me first" The mining doctor; ( early HMO type of physician) with no emotion told her they decided to go ahead when they saw how far cancer had spread. She looked utterly betrayed and wept bitterly. The loss of her breast was also the loss of her husband, as my father would no longer allow her into the marriage bed because "she was no longer a real woman".

I left childhood behind that day, but my mother, bless her, wanted to make my life as 'cancer-free" as she could, leaving me out of most conversations about her treatments or how she was feeling. I knew almost nothing about what she was truly going through.  I did know that my father had left her to fend on her own while inhabiting the same home, he never held her in his arms again. I was beyond angry with him for his behavior, and he had never been a stellar father, to begin with; cruel, angry, abusive, a human being so dissatisfied with the way his life turned out, he took it out on us. He was a broken man in so many ways and one of the most unhappy people I have ever known. Only now can I look back at who he was with some sympathy, but he did so much damage to all of us.

I needed my mother desperately, but she was fighting for her life and her Cobalt treatments were brutal. She was exhausted and depressed and more unhappy than I had ever seen her.  I did all the things a child screaming for help does; ditched school (wild child that I was, I bought day-old doughnuts with my two friends and hung out in front of the movie theater), I wrote excuses for myself saying I had doctor appointments, I never got caught until  my mother wrote one for me and they thought hers was a forgery... at some point the following summer I went to drinking parties with friends, being LDS meant I had never really been exposed to drinking or drinkers, I discovered I hated alcohol and I also noticed that high school boys wanted to get the middle school girls drunk so they could take advantage of them. Since I could not swallow the Budweiser beer given to me, I did not get drunk, I pried my friends out of that party because I knew they would be raped if I did not. I never returned, and I never spoke to those young men again, I was disgusted by their behavior. That summer I learned that many men lived for sex and thought of very little but sex. I was beginning to hold men in disdain, there were none I could look up to any longer.

World Sown Syndrome Day 2016

Amanda is 10!

Raising money for the Buddy Walk!

Join the Levario Terrific T21 Trio in their efforts to raise money for this years Buddy Walk!! Our family is a team unto itself! We appreciate every single donation big or small!!

Follow this link:
https://www.ds-stride.org/tucsonbuddywalk/profiles/team/23 to join our team or donate!

Happy 9th Birthday Amanda

Amanda is 9 today, she is having fun eating chocolate covered ice cream (almond creme) and watching her favorite movies!

We will not have a huge party for Amanda, they stress her out and are not fun for her, so we will celebrate quietly.

Amanda is saying more words every day, she is beginning to shake her head yes and no, which is fantastic for her, it gives her more of a voice, she is fond of NO. Since she is mostly non-verbal, but likes to surprise everyone with random words here and there.  She communicates with gestures, limited sign language and actions.  We have tried many different devices and communication tools, so far none have resonated with her, we are filling out paperwork to get her an iPad to use as her communication device. Her speech therapist and we are hoping it will be exactly what she needs. We have a few speech programs on the family iPad, but since we all share it, it cannot be used exclusively for her.

She has made gains in development, but since she was so very delayed, she is still very far behind other children her age (with Down syndrome). We try not to compare, she is her own person, unique and special in many ways.

She likes to watch Barney and High School Musical, she is a huge fan of most musicals. She bounces on the couch as her way of dancing to the music, she can get pretty high in her bounces.

She adores the iPad and stresses if it is not her turn to use it, will repeatedly try to take it from whoever has it. Her favorite application is Endless Alphabet and a very annoying music program that plays golden oldies like "My Clementine" and "This Old Man", she often switches the language to French and loves hearing "Old MacDonald" sung in it.  Her parents are not as thrilled with the constant music.  Mommy turns down the sound and Meghan or Kara sneaks over and turns it back up, so far Amanda has not figured out how to do this. She loves to scroll through apps too, and will turn on so many she kills the battery!

We have to limit her time on the iPad because it does seem to make undesirable behaviors worse at the end of the day.  (Scratching, biting, pulling hair, throwing things, knocking things off tables) We notice that one hour usage with a 3-4 hour break in between each use works best for her.

She carries baby dolls around the house and likes to lick their faces. She has favorite dolls, and likes talking toys the best. Toys made for toddlers hold her interest the most, toys for older kids often get thrown and broken.

She is taller, but still pretty thin, she weighs under 30 pounds, her doctors say she follows her own growth curve and are not overly concerned about her size, people often think she is a 4 year old.

She is silly, sweet, and autism also makes it hard for her to relate well with others. She wants to be held by most people, but often scratches them or pulls their hair, if they wear glasses, she knocks them off their face. I am so grateful to the patient people who continue to try to form a bond with her despite those behaviors. We work very hard on helping her interact appropriately, it is a constant endeavor. Some days the behaviors get pretty challenging, some days she has very few. The dual diagnosis of autism and Down syndrome is difficult for her, for us, and for our family, but we are never going to give up on her, we love the little scamp, she is our daughter now and forever.

Happy Birthday Amanda Kristell!!

Little things add up to big things.-March-2013

Yesterday this  grandmother and mother was a happy woman. We took care of Mathias, sweet little guy is teething with a vengeance, so not the happy little dude he usually is. We are always on our toes when he is here because sweet Manda Moo has scratched him before. Yesterday for 95% of his time here (about 8.5 hours) she just let him play and even tried to interact with him once or twice in a positive way. She did reach for him once with that special gleam that does not mean warm fuzzies...I was proud of Amanda, she actively worked on not hovering over or scaring the baby, it is a huge step for her.  She will be 8 years old very soon,  she is still the tiniest little gal, very thin bones and long thin muscles, but healthy, thank goodness.

Kara, oh boy,  has decided she needs to push Mathias down repeatedly, when he is here, he gets the sibling treatment; as every single one of my toddlers pushed their younger sib down once they learned to walk. I wonder what makes them feel they need to do it? Maybe that newly walking baby is just getting too much attention? Mathias is a little toughie and for the most part ignores his silly aunties Kara and Amanda. He completely adores auntie Meghan though.

It is so cute to watch little buddy back up and sit on her lap. She always seems so shocked that anyone is sitting on her, the look on her face is hilarious. She adores him too, as long as he leaves her Barbie's ALONE. 12 year old girls, oh save me.

We got to see our wonderful DIL Anna and two of our sons yesterday too. It was a full day, but a wonderful one.

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.

Happily ever after?

Another adopted child died this week, a child from Russia. Anyone following international adoption knows that Russia stopped allowing Americans to adopt a few weeks ago.

Because this very tragic death,  Russians are posting articles about murderous American families stealing their children and hurting them, killing them. I am so upset about this hypocrisy. Imagine, these wounded orphans come to families with RAD and FAS and other developmental and cognitive delays, they are wounded children. Severely neglected, never held or loved, only having their basic needs being met, enough to keep them alive, but not really living. So many orphans die monthly in Russian institutions.                                                                                                                                                    

I have so many friends who have adopted very hurt children, the self abuse these children visit upon themselves is severe and heartbreaking. Scratching  or biting their skin off, pulling their hair out, banging their heads against anything they can, punching themselves in the head or face. rocking, moaning, keening, grinding their teeth.  My two have been home for 5 years ( give or take a few months) and they both have maintained some institutional behaviors.

Kara rocks, she punches herself in the head, she slams her head into the chair if she dislikes what we are serving. She does this off on on all day long, thank goodness she punches herself less, but the bashing her head into things is worse. At night I can hear her bed springs as she rocks.  Kara was from a decent orphanage, they had good heating, OK food, but lazy caregivers who preferred TV viewing to caring for the children. She obviously spent much of her time alone, hence the behaviors she learned to self sooth, she is also non-verbal. I know some of her behaviors stem from being unable to communicate aside from basic signs (food, drink, mom, dad, thanks, please).

Despite that, Kara is a easygoing  little girl, she giggles freely and adores Meghan, those two are best buds and sisters. She happily watches Barney and Disney movies and dances and plays, makes huge messes when she dumps all the clothes out of drawers and out of closets, you know, a regular kid.

Scratches courtesy of Amanda

Amanda has autism  and Down syndrome. Her life is just harder, she struggles mightily to follow the rules we have here. We do not allow our children to hit each other. Amanda though, she loves to scratch. She usually goes after Kara and Mathias, but any person sitting in her vicinity can fall victim to her attention.

Amanda does not mean to hurt anyone, honestly, it seems obvious she is trying to play with them, she just has no idea how, she was never socialized as a baby and toddler, she was isolated and neglected. She is now much like a 15-18 month old in her emotional development, and as such, is acting much like a child that age. When we brought her home at age 3, she was diagnosed with severe delay and failure to thrive, her median development was 4 months.  She has come a long way. It is hard for people to understand that even though she will be 8, she is very behind in every way a child can be. However, she is trying, and she is learning, and we are proud of her efforts and  of her learning some self control.

The effect she has had on our family dynamic cannot be trivialized. My older children have not bonded well with her, they avoid interacting with her because they do not trust her to behave herself . All have had their hair pulled or have been scratched by her.  I know it sounds like that is not a big deal, but she draws blood. She and our youngest son have bonded, he has spent the most time with her.

The sad fact is, Amanda craves attention, loves to be hugged and loves to spend time with people. She is an adorable little monkey and can be the sweetest child.  Her impulsiveness gets her into a lot of trouble.  She is also very jealous of any attention her sisters get, or her nephews, she wants all the attention all the time.

As long as it is myself, my husband and the little girls here, life is pretty calm, but change that dynamic  by bringing in our grandson or other children, and Amanda goes off-kilter. Kara will also get very giddy and jump all over everyone. They love company,  but they get wild. This makes for a chaotic time and we find that our older kids cannot wait to leave here. They think we live with that chaos all the time, not knowing it is their presence that brings it on.  If they were here more, it would stop happening, but they work, they have their own families, and their own lives, so that is not possible.

Some days I cannot wait for the girls to go to bed, when there has been lots of head banging and scratching and crying I am just exhausted. I sit here and shed some tears myself.  Many friends and family just do not want to talk about this aspect of our lives. Old friends and extended family feel we asked for this; we had the audacity to adopt children, thinking we were such great parents we could take this on, so if we are that perfect, we can do it on our own.  A few have said this to our faces, others have said it to each other. Some say we are special or saintly for adopting.  We are simply extremely ordinary human beings who saw someone else in pain and wanted to help. We followed the law of the universe; to care for "the least of these". We are no different than any other parent, sometimes we have the answers, and sometimes we do not.  We did not cease to need support and love just because we added to our family via adoption, but that is exactly what happened.

Why share this? It is simple, I understand what can happen to a family when they adopt internationally, people admire you and are suspicious of you at the same time.  We learned our neighbor believed we only adopted to get tax payer money from the state. (In AZ international adoptions do not qualify for state subsidy ) Can you imagine a person adopting just for $$, I guess some people do, but we are not those people, we paid considerable sums to bring our girls home.  Others want that happily ever after where our love opens our child's heart and changes them into  loving, kind, caring and "normal" children (with Down syndrome). You have better not tell the truth about how hard it can be and you had better not admit you feel overwhelmed sometimes. You better never say; "Why did I do this?" because someone who is adopting might be scared and abandon their plans, and then how will all those people get paid all that money for that child's adoption?  I admit I hate how much money passes hands during adoption, it is indecent.

Even though  raising our daughters (all our kids really) can cause stress sometimes, they do not put us through what children with severe RAD put their parents through. I read that the Russian child (Max) was covered in bruises  and I read comments from people accusing  the parents of doing this to him, saying there is no way a child could do this themselves. Truly those people do not know what they are talking about. Self-abusive children can inflict tremendous damage to themselves.  I do not know if those parents hurt Max, his death is a terrible loss, a tragedy and I am saddened to hear about it. However I am angry that people refuse to educate themselves about internally adopted children.  No matter how many classes you take or books you read, nothing prepares you for parenting a hurt child. You learn as you go along  the best way to help them. Just as you learned when you brought that tiny baby home and had no idea how to parent them.

Sometimes parents get lost, and sometimes the unthinkable happens and children die; like the 20 Russian children lost due to accidents, neglect or outright abuse. There is no excuse for it, and no child deserved to die at the hands of the very people who swore to love and care for them, but who is making sure those parents have support? Who makes sure the children are safe in those homes?

Our social worker has never visited us since she completed our home study. We have no post placement requirements from either country. Kara has a report due to Ukraine this year, Amanda's country did not ask for any since the first 6 months she was home. Every person involved in the adoption of our beloved daughters has fallen away into the past. No one from either agency has asked how the girls are doing for over 3 years.  Think about that, not a word, no call, no email, nothing from Reece's Rainbow where we found Amanda either.  I do not think it is lack of care, I don't, we just fell out of touch. Sometimes it bothers me, I feel like there should be someone somewhere who cares about what happened to the girls, do they wonder how they are?  

If it were not for Facebook groups where I can talk with other parents about  our adopted children, I would feel pretty alone. I am grateful for the people who thought to form the groups, it does not replace loving family and friends who we can spend time with, no, but at least there are others who know what we are going through in our day to day lives.

All of us; hundreds of families,  love and care for our adopted children like they are born to us. We cry because our children are in pain, we pray for their relief from their inner turmoil,  they are  members of our family. I do not know what image those Russian citizens have in their minds about what happens to the children here, but the majority of the children adopted  by families I personally know are lovingly cared for.

Torin Wallce on The Doctors!

President Obama, Fighting for People with Disabilities

The dog ate my ...dishwasher

The thrill of getting new appliances, nothing beats it, right, strolling through a showroom full of gleaming stoves, refrigerators, dishwashers.

It does not take long for a salesman to find you, a millisecond? They work on commission, so they are highly motivated to be helpful. You tell them you need three appliances to replace yours, which you had 12 years, and well, they used to work better and look better. He tries not to look too eager, a practiced professionalism as he shows you THE MOST EXPENSIVE appliances in the entire room. Go for broke, why not.

We go from one to another, hearing why the elite is so much better than the others, better features. Things you really do not need, but they sure are nifty. Then the first time emotion to shows on his face is when you say, "We actually do not need all these features" and he sees his commission decrease...resignedly he shows you the appliances that are a step down from the elite, and you finally make your way to the dishwashers, you know you want stainless steel interior, and that is about it.

You find the color you want, the style (buttons on top to prevent curious fingers from turning it off before it is done) and you go to pay. Happily he tells you "These prices are only good today, tomorrow they all go back to normal" The tail end of The Presidents Day sale. So you take care of the money and arrange delivery, The refrigerator cannot be delivered until the middle of the month, back-ordered. The stove and dishwasher will come the following Monday.

The salesman gives you his card with his cell phone number on it, he tells you to call him if you have any problems.

Husband buys a kit for the refrigerator because you finally are getting an ice dispenser, something that will make a certain 11 year old happier than she should be over something so mundane, and husband installs it. You pull out and clean under everything in preparation for the shiny new appliances. You get a call from the delivery man, they can be there between 3-5. They get here at 4:45.

They haul your old stove away while you sing Hallelujah, dumb stove either did not work or burned everything. Your husband told Sears he wants to install the dishwasher because they charge too much. So they leave it outside, in your back yard.

Your 6 month old Chocolate Lab has been her crate the entire time the deliverymen are here, when they leave, you let her out. She needs to go outside, so you let her out the back door.

She is very interested in the huge cardboard box sitting on your back porch. She wonders what it may taste like? She takes a bite, and you tell her NO, she saunters away, acting disinterested.

You take a load of laundry out to the washer and she has gone back to her huge present and ripped a piece of cardboard off. You tell her no, and she goes to lie down. You spray dog repellent on the box.

An hour later you walk back outside and see white insulation and cardboard all over the patio. You catch very bad dog yanking on the drainage hose. She sees you and crawls to your feet, you tell her "Lola, to your crate now" and she runs in and lies down, staring up at you with her golden-brown eyes, looking very sad.

You look at the drainage hose, there are holes in it, can it be patched?

Husband comes home, you show him what dog has done, he tries hard to control his anger, not certain if he is mad at the dog or his wife?

You call Sears 800# and ask about replacement hose, tell them about the dog, they laugh and say "Oh yes, we had a Lab once" they transfer you to warranty dept, you tell them about the dog, more laughter, the hose is not covered by the warranty, it does not cover dogs. They transfer you to Sears Dept Store who say they have replacement hoses for about $20. You warn them husband is not happy and to expect a graying man with a scowl on his face.

Husband rushes to Sears before they close, wanting dishwasher installed ASAP, and is welcomed by appliance manager who addresses him by name. Husband does not know you told manager to expect him. He is surprised he knows his name.

Email receipt says husband has bought hose and the garbage disposal kit which the deliverymen forgot. They do not charge him for the kit, since it was paid for already.

Husband comes home and tries to put hose on, it kinks, it will not work. Husband gives up. Goes to bed.

The next few days husband attempts to patch hose, all attempts fail.

You go on website to order replacement hose, with shipping it will be $50. You call the salesman who gave you his cell phone number and tell him what happened with dishwasher, and he laughs, you are getting weary of folks thinking this is funny.

You ask him if Sears can order part so you can avoid shipping, he is not sure they can, and hangs up to ask the department manager. 30 minutes later he calls to say yes, they can order it, and no, there is no charge. He laughs and tells you:

"We love dogs, and we have all had something like that happen".

The part will not come until your new refrigerator is delivered.

At least the part is free.

The guilty party.

The Dual Diagnosis of Down syndrome and Autism

Let me be completely honest, I hate autism this week, I know hate is a strong word, but what it does to our Amanda is heartbreaking and frustrating, and I am so tired.

Is it only Wednesday?

When Amanda came home it was like she was waking up from a bad dream. She was obviously neglected, a mouthful of cavities with yellowed teeth and gingivitis showed a toothbrush never passed her lips, she was 17 pounds skinny at age 3, she was 29 inches tall, she came home in 12-18 month clothing, 18-24 fell off of her. I know her orphanage did what they were taught, but they obviously did very little beyond feeding her and changing her diaper.

(I fervently wish someone would go to those orphanages and hold those children, show them love and give them one on one attention, because the lack steals so much from them.)

She had fetid breath.

She smelled awful, bad enough that most doctors who cared for her in those early months gagged if she breathed on them, the optometrists assistant nearly vomited when she did, poor woman was so embarrassed.

Amanda is a beautiful little girl, she has an endearing personality when her autism takes a back door to her sweet side, but her autism gave her a very prickly personality, she preferred being alone, likely why she was neglected as severely in her orphanage, she did not demand attention at all. When we got her home, numerous times a day she would scoot on her bottom to her bed, and would wail to be put back into it. She hated to be touched, held, could not make eye contact at all, if you tried to hold her, she would make her hands into claws and scratch you in terrified fury and confusion, she had no idea how to accept comfort.

Amanda also had no idea how to play with a toy, she would push it back and forth on the floor, wiggle it and watch it in her peripheral vision, or throw it.

She had an entire litany of repetitive behaviors that she self-comforted with, teeth grinding, audible through her teeth breathing, head dropping, repeat, rocking, even masturbation, yep.

She has mixed sensory issues, she loved massage, brushing, vibrating toys she could hold, she loved to be held, back to stomach, but face to face was hit and miss. We worked a long time to get her happy in a persons arms. She would sit with them, make eye contact, flirt, smile, everyone was so happy with her progress. Then she begin to backslide...There are days she will fall into a hug with her faced pressed against us and melt with happiness, others she grabs our clothes, hair, faces, and pinches, scratches, or pulls HARD. We never know from one day to the next how she will react. Often she does both, and usually with a manic look on her face.

We had no idea she had issues when we adopted her, but we learned very quickly, we were certain Amanda had autism that first month home, but we waited the requisite year before we had her tested. Everyone seemed to think it was institutional, but as I have learned in my reading, many adopted children with these severe behaviors do indeed have TRUE autism, the lack of love and attention they get in the orphanage only makes the behaviors worse.

Amanda's development was so delayed, she did things a very young baby would do, although she could sit, stand, locomote (in her own very original way) she had zero self-care skills. We fed her all her meals for 3 years. Miraculously and after a lot of very hard work, Amanda finally allowed a spoon to stay in her hand, and she began to feed herself. It was a tremendous milestone for her, but I think she misses that one on one attention too. You can see her sometimes watching me feed my Grandson with a wistful look on her face, and she asks to be held while I am feeding him. Actually it is pretty typical behavior when the youngest loses that status to another child, even if he does not live with you. She will have to deal, it is life, ya know? I have been through this 7 times with my kids, all the other youngest children survived, Amanda will too.

She got better and better about every single autism related issue she had. And then the switch got tripped...her development has progressed from infancy to what most mothers would call "terrible twos". With Meghan, terrible twos lasted 3-4 years, those annoying things two year old's do to their moms as they learn about their world, (to be honest it is really two years with typical kids, we called it terrible-twos and tyrannical threes). Kara finally stopped throwing everything a few months ago, though she still does it occasionally, that throwing can test a parents patience...especially if it is a remote, cell phone, camera. sigh

It is just so hard, a child with Down syndrome going through this stage is a challenge, it is really a lack of judgement that makes it dangerous for all kids. Autism has added something else to this, it is a Tasmanian Devil, or Godzilla persona, pure destruction, throwing everything, pulling hair and terrorizing the dog, cats, Kara, sometimes Meghan. Smash O crash. Grrr argh monster, stomp stomp BOOM! Yesterday Amanda was taken to her room, on the way she knocked over every single thing she came into contact with and she was screaming the whole way there. My son and his wife came for a visit, and they had Mathias with them, she was all over them like a Piranha in South American waters. She got to be in time out three times. It was really for every ones protection, including hers. I wanted to cry.

If you come over for a visit, watch out. Amanda will get behind you and try to kick you off the couch. If she sits with you, you may be pinched or scratched. She will pull your hair in the middle of a hug. She knows better, and all those years of "gentle touch" "kind hands" well, gone, she either cannot remember, or just cannot help herself.

Their special ed teacher J called me two weeks ago and I told her HELP, Amanda is acting up so much, we talked and she said "It is fantastic though, her development is progressing" and she giggled, good thing she was on the phone, cuz her hair may have been pulled, and not by Amanda. I sighed and laughed with her, she was right, it is a great thing, Amanda's emotional development was stuck in infancy for so many years, moving to toddler hood is a milestone. *sob*

She is very jealous of her new nephew...who her mommy loves so much, and HER mommy holds and feeds him, and he gets the attention she wants to have ALL THE TIME these days. I cuddle her, all too often while keeping her hands away from my hair and gently telling her "nice touch, soft touch, NOT A m-e-a-n touch" (Yes I admit to using silly voices when I do this, it gets her attention)

Except I am exhausted from stopping her, I look at her and ask her, "Little girl, you know you are hurting people, and it makes them not want to be near you, right?" She looks at me and asks for a short hug, she knows, she does. So we begin all over again to teach her how to channel those icky, wiggly, cannot-stand-to-be-in-my-own-skin-feelings.

Autism, I hate it, I feel like it robs Amanda of the joy she would otherwise have, it seems to take control of her and makes her do things she knows not to do, and the struggle is there on her little face, the confusion, so she screams and yells and throws things in frustration. She has to work through this stage, no magic pill with make it go away; just love, lots of work, PATIENCE, and TIME.

Can I tell you how much I want to cry at the end of each long day? I am exhausted, but I am a mom and this is what we do, we work with our kids NOW so they can have a better future.