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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Tuesday, January 24, 2012

Sharing pictures

I wanted to come out of blog silence to share some pictures. Another post will follow this one about how I am doing. These were too cute not to share.

Kara with her constant companion a Groovy Girls dolly, all chewed up and ripped up and sans clothing, this doll is her favorite. Scratch on he face, courtesy of Amanda, who has taken to using her nails on all of us lately, ever since Mathias was born, sigh. Kara is holding a bowl to tell me, chips please.
Oh Amanda, it is so hard to get a picture of her looking right at me. Her nose really is not that big LOL, perspective...Look how much she is changing, and is there any doubt of her birthplace, I mean truly, she is 100% Estonian! Lately Amanda has been acting up, pushing people off couches, scratching, pulling hair, and saying uh uh uh (NO) like you would expect from a two year old, wow, she is almost 7!

Meghan is 11, a young lady already, she wanted to model one of the dresses Julia gave her for Christmas. When I say Meghan is 11, I mean she is like all other 11 year old girls; sassy, emotional, rebellious, oh save me, here we go again...

My grandson Mathias, he is such a good baby, and he changes so much every single day! I am lucky enough to babysit him a couple of times a week, and I am loving it.

Mom look at me, MOM LOOK at ME,MOM. Yup, the other dress from Julia, Meghan loves them.

My doggie baby Lola, such a rascal, and I love her to pieces.

Wait, that is Amanda's foot, stop that Lola!

Kara seems to sleep all the time, luckily we can stop afternoon naps for the most part otherwise she is up half the night bouncing in her bed. You can see that she can sleep anywhere, she is waiting for lunch here. LOL

Meghan loves to pose for mom, "Picture of me Mom" is a favorite phrase.

We got Lola so we could train her to be a companion animal for Amanda. Her temperament seems contrary to those wishes, but the two of them migrate to each other all the time. Lola is mouthy, she is getting better, but the puppy trainer did not seem to have much hope for her. She is almost 6 months old. And no, she is not allowed on the couch, oh, bad dog, spoiled brat!

Guess what we had for lunch yesterday?

Losing the will to blog-an update of sorts

Grief and loss, I do not do well with either, always holding on to the emotions longer than most people feel I should. On October 14th 2011 Becky, my dearest friend of 23 years passed away suddenly. Pulmonary embolism following neck surgery. I miss her terribly, she was such a huge part of my life, and I find that people cannot understand the deep friendship we had. I still weep when I realize I cannot share my day with her. I was told that I should "Feel better by now" and "Should let her go". Really? A little over 3 months has passed, so that is long enough to forget a friend who was like a sister to me? That makes me even sadder. Perhaps those who cannot understand my grief have never loved and lost a close friend?

Becky loved the beach, living in Arizona made her sad, and she longed to live closer to the water. She used to say that she pictured the two of us walking arm in arm in our elder years, two old gals sharing a stroll, that image was in my head when I fought cancer, I felt certain that meant we would indeed do that, but life had a different story to tell. I do have a wonderful husband, and I cherish our relationship, still, I feel a woman needs female friends to share her heart with, as they can understand what most men simply cannot.

I found the picture above on-line and asked the photographer if I could share it on my blog. It depicts a woman walking alone on the beach, and that is me now, could I stroll with my children and husband, of course, but I will never take that walk with Becky in this life.

I have so many wonderful reasons to be happy, I do, I have a husband who loves me and does his best to be my life mate (I can be difficult to live with sometimes) I have healthy children, my youngest three are rarely ill, (knocking on wood) and with Down syndrome, I know I am blessed, that they are blessed, not to have one of the many ailments that can and do make people with Ds ill. I am very grateful that my girls have minor issues; alopecia (Meghan), dermatitis (Amanda), uncontrollable frizzy hair (Kara). Of course there is Amanda's autism, which makes her emotional life hard, and our lives challenging, but we accept it is who she is. Still if I could make a wish, it would be for her NOT to have it. Amanda's autism is cruel, it traps her potential, it traps her self-expression, and it makes communication nearly impossible. And yet we refuse to give up!

I have a new grandson, Mathias Owen, he is a wonderful baby, and I get the pleasure of being able to babysit him sometimes. I can already see that his brain works differently than the children I care for daily, his development is right on track. The girls adore him, though Amanda is pea green with jealousy over my divided attention when he is here. I get to hold him and feed him his bottle, I find it feels my heart with jubilation and gratitude, gratitude is my constant companion since having cancer, I cherish every single moment I can love another person in this life.

It is another one of those things people think I should forget, nearly 9 years since I got the news I needed a mastectomy, so I am good to go, right? (Stop playing the cancer card Kris) Cancer is vanquished and I am cured, well, yes, and no. I lost over half my very close support group friends to cancer, so no not gone, gone to sleep sure, but gone forever? I pray it is so. I know more about cancer than a lay person should, how it grows, why and how it spreads to distant organs and bones...and I will leave it at that. People hate talking about the C word, the big C, etc. Scary life stuff, please is part of my life story, from my mothers death to my diagnosis to the loss of many dear friends. I will not stop talking about it because people are afraid to utter the word.

When I cuddle Mathias and feel his little head against my cheek I painfully remember that Kara and Amanda never had a doting mother or grandmother to love them as infants. When they cried no one came to pick them up and soothe them. When Mathias cries for a bottle, Kara is right there stroking his cheek while I warm it up. I got a revelation last week that she may have done the same in her orphanage since it is her response every time he makes the slightest noise of displeasure. Kara must have given comfort to squalling infants while the caregivers sat by and let them scream. I wonder how many children actually did try to comfort each other from adjoining cribs? I wonder how long it took them to lose their compassion for one another? The older children did not seem to notice when another was sad. And if an older child (4-5 years old) had the nerve to cry in pain or sadness, the caregivers slapped them and yelled at them until they stopped. Yes, THEY DID. After being there for nearly 6 weeks, they did some terrible things in my presence.

The thought hurts my heart, the revelation of what life is for an infant or child without a family makes me weep. The cries and sobs of those babies in Kara's orphanage in Ukraine still haunt me, the image in my mind of workers sitting and chatting, eating sunflower seeds and watching TV while a baby hiccuped and choked on sobs, no expressions on their faces as a baby cried for help and comfort. My stress growing as I longed to run to the back and snatch that baby up, oh how it hurt me to hear his/her pain, Kara was also visibly upset when that certain baby cried, her lower lip protruding into a pout, her eyes welling with tears. (I got to see him/her later, a little one with CP, bald, with such an engaging smile, the only young infant in Kara's groupa.)

That scene played out nearly every evening I visited Kara. The older workers emerging from the back rooms scolding the younger gals; those same four women sitting and ignoring the children, the smell of them, their body odor, of clothing left unwashed for days, sweat, and stale cigarettes, the sheen of oil on their faces from the heat of the room. All embedded in my memory. One of them could have held that crying baby, but none seemed compelled to care. I was told by our facilitator that they resented how poorly they were paid, and did the minimal, and they felt that they should not give attention to the babies, that the sooner the infants learned they should not expect it, the better...some babies gave up easily, other stronger willed children kept trying.

Can you imagine, crying out in pain and fear and being ignored day after day after day, the only time someone held you was to change your diaper and to feed you? Both done without that person speaking to you, done in a assembly line fashion? Never having you forehead stroked or a gentle kiss placed on your soft cheek?

I know that my two adopted daughters were forever damaged by that same negligence, and no amount of love and care will fill the void of their first 3 years. It makes me wish that the hearts of their birth parents would have been strong enough to disregard societal convention and keep their babies. It has been four years since I was in Vorzel for 42 days, and my grandsons crying transports me right back to the orphanage every time, my mind does not register the passing of time in days, months and years, sure I can mark time off a calendar, but time means nothing to my injured heart and conflicted memories of that time.

When I am sad, my mind plays over the other times I felt sad, angry, scared or confused, I contemplate those experiences and try to reconcile them, try to forgive the people involved a little more, I can hold grudges for a while, it is not something I am proud of. Life is a process, and I am terrible at compartmentalizing, I suppose if I could place every emotion into a neat little box I could just forget the past, but everything blends together like sand on a beach, each experience shapes me into a different person day by day, for better or worse.

I have often heard time heals all wounds, I beg to differ, and perhaps some wounds should not mend completely, lest we forget the reasons we are living. I have always felt that we live to love and protect one another, to lift people up when they fall, and to stand up and try to stop grave injustice. Oh how many times was I called an idealist or a Pollyanna, etc. I find it curious as I am not blind by the woes and evils of the world, and I am not insanely optimistic either. What seems to irk people the most is my need to make them aware of those things, to wake them up and make them CARE about something other than their newest TV or car...

If we forget our experiences whether they are painful or joyous, we are nothing but unconscious souls existing in a life with little meaning. I would rather be fully aware of everything life brought to me, painful or not, and I learn and grow more from adversity, though I do not wish to suffer through it, I feel it helps me have more empathy for others who are struggling too.

So I go on, embrace what I am feeling, I wonder how Becky's loved ones are coping, I wonder if they feel the same intense void in their lives without her, I am sure they do. I think all of us want to leave a legacy behind after we die. Yes Becky had her own woes and challenges, but it never stopped her from showering the people in her life with unconditional love. Unconditional love is a rare and precious gift, and I was lucky to be the recipient of it.

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