Saying goodbye to a special young woman

I read about this amazing young woman last year, I collect articles and stories about people with Down syndrome getting married, working, painting, singing, acting, all positive things I had shared with Meghan, Kara and all my friends.

Sadly Melissa Riggio passed away from leukemia Monday April 7, 2008. She was an advocate and an artist and an inspiration to many families. We are saddened to hear this news. We know Melissa rests in the arms of Jesus now.

http://kids.nationalgeographic.com/Stories/PeoplePlaces/Downsyndrome

The Ring
Words by Melissa Riggio
Music by Rachel Fuller

I'm in the Ring outside
I'm following my belief
I'm looking at the sky
I saw God following my heart

I'm an ordinary woman
The Ring is falling down my way
The wind is blowing me away
The Ring is falling down, down my way
The wind is blowing me away

And so I came back to
The center of the Ring
Am I just a broken angel?
God has sent me here to heal
To be an ordinary woman

Yes, getting there

Kara singling, Lalalala, off tune and loudly. LOL

We have DDD and Child Find appointments, DDD (Division of Developmental Disabilities) appointment is April 10th and Child find, who will evaluate Kara for the school district is on April 16th.

I am grateful they are both this month. Child Find asked me if Kara needed an interpreter, I am assuming her receptive English has been growing for months now, but I was taken aback, should we have someone asking her questions in Russian, or does she remember it? I know they lose their language very quickly, but how quickly? Any thoughts? At any rate she does not say any words yet, so she will not be speaking back to them.

Wow, Kara is really growing fast!

The girls in February, you can see that Kara is much larger now in the picture below, check out her chubby little arms. I think we need to cut back on her juices. She is drinking more water, thank goodness. You can see that Kara's head is now higher than the back of the bench! Her 18-24 month clothing is too tight, and she is moving into 3T's.

Just trying to get two girls to smile at the same time is a challenge, LOL, here is a sweet one of Kara, who does not like the bench is and is not happy to sit on it.

Meghan, excuse the messy hair, we were just outside to water plants, but I wanted to take a few pictures, we have not combed our hair yet...

The funny sisters, they do have more and more fun together. Meghan is also very protective of Kara and gets upset if mommy scolds her (usually for knocking over lamps and glasses full of milk :o()

Both Kara and Meghan forever have their hands in their mouths, when we were in Ukraine Roma (who is still looking for his forever family) also had his hands in his mouth often, they must need that feedback or stimulation? Any other moms notice this? Have any solutions to lessen this behavior?

Roma and Meghan in Ukraine

Down syndrome, and rambling thoughts

I woke up extra early this morning, I do cherish some alone time and I went to my support group and read about a young man with Down syndrome who was depressed. No one knew why, until he finally opened up and explained how he was feeling. You can read about him here: BLOG What spoke to me about this young man was a concern I had about my now two soon to be three daughters with Down syndrome. For Meghan it will be easy to tell her, not for a millisecond did we consider you not being a part of our family.

For Kara and Amanda; Kara's mommy and daddy left her at the maternity house after they learned she had Down syndrome, and Amanda is the 4th child in her family, she was given up because of her diagnosis. How do I tell them they were cherished children when their own families did not want them? They will be loved and cherished by us, but I know they have to carry pain from being left and not knowing the loving embrace of their mothers after their births. When Meghan was a tiny infant she did not like to be left alone and would yell until someone returned, not crying, vocalizing, like "Hey, hello? Hey out there". It was uncanny that she could communicate her needs so well. These two angels would likely have cried out and been ignored as the caregivers tended the 30 other babies in their care.

We heard many hysterically crying infants while at the baby house in November-December last year. In fact I had to leave because it made me ill to hear the need and not be able to answer it. Several times the caregivers were sitting and watching TV and eating sunflower seeds while the infant(s) was screaming. I was angry with them and upset for the baby(ies). I left the orphanage in tears many times because of their indifference and laziness; something DH said because he had worked in orphanages here (we don't call them that) and said it is unheard of to sit and relax when the children needed you. I inferred that they did this to all of the babies in their care and the babies learned they could not count on anyone to give them attention, and forget about loving them. HOWEVER, Kara did have two older women who obviously loved her and took very good care of her, I could see it in their eyes. When they worked neither came out of the room and lazed about. When I opened the door they were often rocking babies and singing to them. You could tell they cared about the children, but the young workers seemed to like to watch TV more.

Well, we have been home with Kara for 3 months, I can't say that people have rushed to our home to see our new daughter, s few very good friends, yes, thank the Lord for them. We are so excited and happy to have Kara home but yet many of our old friends clearly do not share that excitement. To be honest, most of them can't wait for their children to leave home, and look forward to that empty nest, I guess I am the opposite.

I think a lot of us are shocked at the reactions of friends and family when a child with Down syndrome enters our lives. When we decide to adopt a child with special needs, many people react badly, and try to talk us out of it. Some just don't say anything but stop returning calls and emails. I suppose that is when you decide to leave those friendships in the past and move beyond them.

I have done a lot of reading about Down syndrome since Meghan was born 7 years ago, I made it my goal to know all I could about her diagnosis. I joined support groups both in person and on-line to help with the day to day things parents of typically developing kids do not understand. My friends here tried to be supportive, but they did not know what we were going through. Meghan's doctors did not send me to any of these groups, they did nothing to help us, support us, and one told us to give her up for the sake of our other children, and that she would destroy our lives. He was our doctor ONE day.

We got some wonderful and supportive phone calls after all our friends heard about Meghan, we also got quite a few strange reactions that baffled us. I guess my favorite was from a woman who had a daughter with cognitive issues herself; she told me to tell everyone I had an affair with an Asian man, since Meghan looked Asian to her. At the time of her birth I was working with senior citizens teaching fitness classes for them. I loved them, and they had given me a huge baby shower, some however used the term "Mongoloid" to describe Meghan, and a few were off put by us keeping her in our family. In their day it simply was not done.

I was lucky to be able to see their attitudes change, Meghan was not allowed in the day care with the other children because she has a floppy airway, but her doctor allowed me to take her to my senior fitness classes. They all understood if they were ill, they should not come. From age 3 -8 months they watched her grow and change. They saw her popping her chest to the music, laughing when they did, smiling at their antics, interacting with them.

During that summer they saw her learn to get out of her car seat, scooting across the floor to their chairs so she could take their water bottles. After a time I could see that they loved her spirit and determination. They also started to say; "She is more like a normal baby than not", now it wasn't a statement I liked hearing (the NORMAL aspect of it), but it showed that Meghan helped change their minds about kids with Down syndrome. Many of them adored Meghan and asked for her when she was finally allowed into day care.

Meghan 2 weeks old

Meghan helped teach some older folks about the true nature of children with Down syndrome. Many people think we are "enlightened" in America and sometimes we we sit and point fingers at those women in 3rd world countries who walk away from their children when they see physical deformities or hear of genetic abnormalities. I can't say Americans are more enlightened, I think a 90% abortion rate tells me otherwise.

I think about the children we have, our homegrown and adopted children with Down syndrome. How do they feel when people stare at them, or the ignorant say cruel things, or a whole group of doctors decide that a child like them does not deserve life, and encourage pregnant moms to terminate them?

These are the beautiful children who have been in my life since Meghan's birth, these are faces I look into and see beauty and hope, and love.

I met some of their moms shortly after Meghan's birth, we all belonged to a huge on-line support group, but it seemed all those people did was talk about school issues, so we splintered off into our own little support group, 15 moms from across the globe with infants under 6 months of age. Many of their children are pictured here.

Others I met later on, most of them were much younger than I, and most did not know until their baby was born that they had Down syndrome. One of the mothers was 18.

If ACOG has their way, they will never be another family surprised by the birth of a child with Down syndrome, they want to test all expectant mothers. What would be the purpose of this testing if not to have a 100% abortion rate of what they believe to be "defective fetuses". Many who have given birth to or adopted children with Down syndrome have issues with these guidelines. We wonder what they are saying about those who are already born with the diagnosis of Down syndrome, it is understandable why they are depressed, and why the young man in the beginning of my blog is feeling so upset.

Social security card in hand!

Yes, it is here, I am so relieved. Yet I feel somewhat disturbed, each envelope was torn open just enough for someone to peer in with a fiber optic and see our numbers. You would think that the SS administration would protect our identities better than this?

Why am I disturbed, is identity theft really that big of a threat? OH YES. Right now DH is fighting the credit bureau because it lists that we defaulted on a T-Mobile bill. Supposedly we ordered three phones in 2005 and ran up a $900 bill and never paid them. except the name was wrong, the drivers license number was wrong, and WE HAD ATT-Cingular-ATT for over 10 years, AND we do not live at the address listed. We have lived here for 22 years. Not to mention it was not us, until this charge showed up on our credit report did we even know about this bill (well why would we?) Equifax said they found we owed this money, it WAS our bill. Somewhere some scumbag is laughing as he gets away with this and skips off to hurt another family...

So here Kara gets her SS# and the envelope is torn enough for someone to steal her identity. I suppose I call the SS administration next. Any of our blog readers know what I should do, you can tell me I am being paranoid too. We just got news last night that Equifax denied the claim. I am so perturbed with them, they are completely and utterly wrong here and this is quite damaging to our credit, and yet they do not care.

On the bright and sunny side, we can get her appointment with DDD (Division of Developmental Disabilities) now, our Kara will get on the system and begin getting ready to attend her special preschool next August!

Wow, time flies, Kara's 3 month update

Kara Irina has been home for 3 months!

Kara is doing very well and we can report that she is beginning to walk 5-6 feet at a time, and she is determined, she will walk to the sofa and then crawl back 5-6 feet away, and walk there again and again. She giggles the whole time and we clap and cheer for her all saying BRAVO!! Her huge smile makes all of us happy and the change in her personality is awe-inspiring to me. I rarely saw her smile in Ukraine, though I think the orphanage staff did, and they were worried about it when she didn't with us as much. I understood her; we were complete strangers, and she was getting to know us. By the time I left with Kara, she smiled for me, but not at me, now she smiles at me, at us, this is progress!!

Her determination gets our little daredevil into trouble; she has found a way to climb onto the back of the sofa from behind, onto the antique sewing machine, and then she slides onto the sofa and tries to crawl over the top to get back where she started. I will get a video of her doing this. Yesterday she slid off the sofa and onto the floor, whoops, overshot. She was fine, actually laughed and started over. Meghan is determined NOT to let Kara climb over the sofa and tries to stop her, which make Kara MAD, and they argue. We are worried Meghan may accidentally make her slip, so we do not let her stop Kara.

I think we all worry she will fall, and have to watch her very carefully all the time. She is also very determined to get to her daddies laptop and threw it to the floor the other day. We cannot leave it open on any table, and have to close it and place it on the floor if we get up for even a second. I do have to say that by nap time I am happy she sleeps for a while, the adrenaline rush tired poor mommy out.

Her eating issues are improving, but she still does not chew her food. I place it on her teeth to encourage her, and she bites my fingers, and she bites hard. We have been working hard on this, and once she has services, we will get a feeding specialist to help us. It has not hurt her nutritionally, we just mash her food or cut it in tiny pieces, and she has gotten quite chunky! Her skinny little legs are pudgy and squish-able, and her already chubby face is even chubbier! She has a sheen to her hair and more energy than before, though I felt she was well cared for in Vorzel, she always seemed to be starving once home and was apathetic at times (depression probably had something to do with that), and she still asks for our food after she has eaten. We feed her first, otherwise we cannot eat in peace and she still will not feed herself, though she is improving there as well.

Her skin is not adjusting well to our extreme dry weather, mine is also a mess right now, we are a desert, but it is exceptionally dry right now. Our main issue is getting her to drink enough water. She does not like plain water, but we do not give lots of juices to Meghan or she...except lately, and that is because it is all Kara will drink. The last week she has began to drink more and more water, and we are working on milk, though we tend to not drink it often, we do not think dairy products are all that great for us, especially non-organic, and we would prefer raw milk, but cannot find any. She does eat organic yogurt all the time, and grilled cheese sandwiches (in tiny pieces), so she is OK with her dairy. She does not like really cold food like ice cream; I hope she will realize she will want colder water this summer when it gets over 100 degrees here.

Kara has learned how to clap her hands! We are so happy to see her doing this as we attend a lot of plays. :o) We think she enjoys the theater too, just like Meghan does. She is a toddler though, and cannot sit still more than 30 minutes, so we do lots of bouncing to keep her happy.

We believe she is adjusting well, learning our rules and what we will and will not allow behaviorally (biting, hitting, pinching), and getting used to our family. She will crawl next to me and sit with me if I am on the sofa. She often rests her head on my shoulder and smiles up at me. Most of the day she is exploring different corners of the house, getting to know her environment. She will not move to another area until she is comfortable in the first, weird...she will not play in her bedroom, only sleep there.

She will have her social security card in 2 weeks and we can pick up her number Monday. We can now get her in the system, apply for ALTCCS and DDD services, get her into the school system and signed up for Project Able for August. All we needed was her adoption decree, COC, and her new foreign born birth certificate. They authenticated these through their system and handed all of those very important documents back to me, I was so relieved I did not have to entrust them to the SS office. It was easier than the person on the phone indicated, and we are grateful for that.

We love her very much! We think she loves us too, but at the very least, she likes us a lot. :o)

The play was wonderful

All three of the actors gave great performances and we are so proud of them. We got many compliments from the audience about Brian, so he was well received. I am so impressed with his skill and the growth he has had as an actor this past year. His singing has also improved and he is such a professional. I can see him leaving here to have an acting career someday, and I think I don't see him now? I would probably not see him for months then. Best to not think about it too much.

We sadly missed Marcus' play, he was the emcee in Cabaret. Marcus is our 5th "son" and we love him dearly, I feel so terrible to have missed his play. I am happy that it was videotaped and we will still get to see his performance.

I was also very proud of Meghan and Kara, those two sat for 1 1/2 hours and watched the play attentively. Kara vocalized a couple of times and made everyone laugh, but she was so good. Meghan is an old hat at behaving at theater productions. Also along for this performance were my oldest son Fred and Julia, who of course are mature enough to behave no matter where we go. LOL Terry, my second oldest son was visiting good friends who just got married, and Eric, my 4th was working.

This play is very poignant and I was in tears at the end, many people were. The cast of three got a standing ovation.

Another play for Brian

Brian and the other cast members

My youngest son Brian is an actor, if you read my blog you know that already. he is in another play and it is getting great reviews. We see it on Sunday,

He has been in many plays with Kristina Sloan, and she is an awesome actor herself with a voice that makes birds jealous and a very sweet young woman on top of that. No, they are not an item, they do have a great relationship, just not that kind.

Having Kara and Meghan, it is hard to plays as a family, neither sits still anymore, separately they do fine, together... Meghan used to be a great audience member until Kara came home and Meghan began acting like a much younger version of herself. This too shall pass, she is just adjusting to her new role as big sister. Right now she is playing with Kara and they are giggling, so all is good in my world.

Birth Certificate of Foreign Birth

Came in the mail today, BUT

See Kara's expression? I am beginning to feel this way myself, these bureaucrats are driving me bonkers. AZ has so many silly laws that seem to prohibit international adoption and make it very difficult to those of us who have adopted, this latest thing is just the last straw for me!

Doesn't Kara look like a Hoo here? LOL

I waited since the 22nd of February for the birth certificate and was not pleased to see these words" This certificate is not evidence of U.S. Citizenship" well crud, as if I were not a grump already today, this really steamed me. Why did we go through all that hassle if it is not proof of U.S. Citizenship? I showed them everything they asked for!?

Now I am supposing (which let's face it is dangerous) that the COC (certificate of citizenship) combined with this birth certificate will be enough to get Kara's SS#? Suppose these folks have different ideas, when I called them they told me to bring ALL of the documents from our adoption. Give me a break people, all you need is the COC and the birth certificate. Grrrrrrrrrrrr.

DH has agreed to deal with the SS office, I have had it with this paper chase here. Besides he missed most of the fun in Ukraine getting those papers so it is only fair, and you know what, AZ is just as wacky (though the fees are upfront...) I wonder if I should just get her passport to prove she is a US Citizen. I wonder what paperwork THEY would want?

Kara's heart is A-OK

Both girls saw the cardiologist today, Meghan was her usual uncooperative self and Kara was just curious about everything.

Meghan was great, no issues, and Kara's exam showed no heart defect, her echo was 100% normal. Their doctor is retiring, we saw a new doctor today, he was nice and seemed thorough. He also looked really young, man am I feeling old!

Neither girl needs to return again. The doc said Kara's purple hands and feet (when she is cold) are just bad circulation and normal for some children. Not heart related.

Still no birth certificate, so much for promises made by government office workers huh?