I meant to post daily, somehow with three kids at home all day and a new puppy, I just cannot do it.
Today Tom spent half the day moving the fallen tree to the front yard for bulky pick-up.
I took Lola to her first puppy class, she snapped at the instructor over and over again, which kind of made me feel relieved that even a trained professional could not stop her easily. Although I can see I have a lot of work ahead of me. At least she is inhibiting her bite now. I learned that even though I am fine around Lola, a room full of puppies brought my allergies on full force and I have been miserable all day.
Kara is feeling ill, she has been sleeping a lot and has a runny nose, I am hoping it is seasonal allergies.
Amanda's arms are almost healed from Lola's love bites, though she continues to put her hands in Lola's mouth, so another thing to work on.
Meghan is getting really good at singing, she is learning lyrics to most of the songs she loves, and I just love hearing her sing them. Right now she is loving Tangled. Last year, when we were getting ready for Meghan's IEP review, the school speech therapist called me, I was telling her how frustrating it can be when Meghan refuses to use her words to communicate, she told me, if she was not talking well at age 10, she likely never would, well, I am glad to say, she was wrong, Meghan's verbal speech improves every day. Note to professional, be careful about making proclamations like that. Additionally, Meghan F2F speech therapist A did not agree with E, the ST at the school!!
Friday was Julia's 19th birthday; we went to Chicago-not the city, the musical, with Julia, her boyfriend and two of her friends, our son Fred, Meghan, Kara, and Amanda, and we were excited that A, the girls speech therapist, could come with us. Brian was playing Billy Flynn, and we were all excited to see him in another show. The little girls did pretty well the first act, but the second act Amanda began to do her Pilate's legs, she does it when music makes her happy, the man in front of us was not pleased, he turned around and told me "You know some of us are trying to enjoy the show". Tom grabbed Amanda and left, Kara began to get squirmy and wanted to sing along with Razzle Dazzle, so I picked her up and left with her. Meghan stayed with A, and I just hated to leave her, she was unusually shy that night. While we believe that our children deserve the chance to learn to be good audience members, but we do not want to ruin the show for others. Though I admit, I had an Ally Mc Beal moment where I envisioned smacking the arrogant man upside his head. Oh yes, and we knew him, he realized we knew him and blanched, but too late, you blew it sir...I was in tears though, I am so tired of people treating our family this way. The girls were not horridly bad, just mildly annoying. sigh. http://studioconnections.net/2011/09/chicago/ if you live in Tucson, I hope you can catch the Chicago. The cast is great, and I know Brian would love to see you there.
I am hoping for a quieter week this week, the little girls have one more day of fall break and then we are back to schooling. It has been nice not to have to log on and do the work for a few days.
Dad, Mom, and baby Meghan
Sunday, October 9, 2011
Sunday, October 2, 2011
B is also for Buddy Walk
SANDS (clickable link) Is hosting the Buddy Walk again this year.
This year our family will host a booth for Reece's Rainbow. We hope to raise money locally and also raise funds for The Voice of Hope Fund for Reece's Rainbow. You can donate to either or both, all funds go towards helping individuals with Down syndrome.
This year our family will host a booth for Reece's Rainbow. We hope to raise money locally and also raise funds for The Voice of Hope Fund for Reece's Rainbow. You can donate to either or both, all funds go towards helping individuals with Down syndrome.
31 for 21 day 2-ABC's of Down syndrome-B=Be in the moment.
Do you ever drop everything and dance with your kids, or belt out a song with them? We do that here all the time during our school day. Meghan loves to sing, and being that she is not a critical person, I sing with her...I dance with Kara, I bounce Amanda on my knee whenever she wants me to, we all live in the moment every single day. It is one very important lesson I learned over the years, to just enjoy life.
Our house does run on a routine, but it is not rigid, though the girls expect things to progress a certain way, and they get discombobulated if we alter it too much, it does not stop them from giggling and dancing with Mom. Breakfast, lunch, and dinner need to be within certain times, and they have to do their schoolwork the time and the same way. Still, I have never seen anyone enjoy every single second of their day like my younger three do. If I put on music, they are up and dancing. If I put on their favorite movie they are smiling and excited, even if they saw it 5 times that week. They are just happy with life. They can also get storm cloud angry just as fast, but children are like that.
Eric and Melissa, it was a beautiful wedding. We welcomed a new daughter to our family, and a new granddaughter Megan.
Meghan dancing at her brothers Eric's wedding.
Kara on the dance floor with the streaker, little guy kept taking off his clothes LOL
Lola running at me, she is FAST.
Unhappy Amanda, she wanted out, but kept sitting in the middle of a busy dance floor. If you click on the picture, you can see the scratches from puppy teeth.
Our house does run on a routine, but it is not rigid, though the girls expect things to progress a certain way, and they get discombobulated if we alter it too much, it does not stop them from giggling and dancing with Mom. Breakfast, lunch, and dinner need to be within certain times, and they have to do their schoolwork the time and the same way. Still, I have never seen anyone enjoy every single second of their day like my younger three do. If I put on music, they are up and dancing. If I put on their favorite movie they are smiling and excited, even if they saw it 5 times that week. They are just happy with life. They can also get storm cloud angry just as fast, but children are like that.
Eric and Melissa, it was a beautiful wedding. We welcomed a new daughter to our family, and a new granddaughter Megan.
Meghan dancing at her brothers Eric's wedding.
Kara on the dance floor with the streaker, little guy kept taking off his clothes LOL
Lola running at me, she is FAST. 
Lola stalking the poor cat
We got a new puppy, she is a Lab and loves to nip and chase the girls, especially Amanda. Kara and Meghan just walk away from the puppy, and they are left pretty much alone. Now you or I, we would just stay away from a nippy puppy, but Amanda, she sees the dog and gets happy and tries to play with her. Someone needs to tell Lola in dog language that Amanda is not another puppy and does not have fur like her that protects against puppy teeth...Lola is learning, she is only 2 months old. The dozens of chew toys only distract Lola for so long. The Kong toys are helping, Lola spends a bit of time in doggy time out.
Unhappy Amanda, she wanted out, but kept sitting in the middle of a busy dance floor. If you click on the picture, you can see the scratches from puppy teeth.Saturday, October 1, 2011
31 for 21 day 1-ABC's of Down Syndrome-A
A is for acceptance, advocacy, adoration, adoption, and of course the other A word which I will save for another day.
We are birth parents to almost 11 year old Meghan (and Fred, Terry, Eric, Brian, and Julia...) Funny, most people assume we adopted Meghan because we are older. Ya know ancient, in our early 50's, yikes. I hate hearing "Are you their grnadmother". OUCH
We did not have a prenatal diagnosis, we did not seek one. We had 5 children born without any issues, so why should our 6th have any? Except somewhere in those seconds during her earliest cell division, her 21st chromosome got sticky and made 3 copies instead of 2. So in that 11th week of pregnancy when I got the surprise announcement that I was expecting, Meghan was already a baby with trisomy 21.
When Meghan was born and it was obvious to everyone from her facial features, hypotonia, and heart murmur, that she probably had Down syndrome, with her birth we learned the first A word. ACCEPTANCE.
For some parents acceptance takes a long time. It is not because we do not love our child, though I am sure there are cases where families simply cannot, not in the enduring way a parent loves their children, and those parents give their babies up.
We accepted and loved Meghan on sight, but I felt very sad and guilty about her being born with a condition that would mean the world (which is cruel enough for most of us anyway) would not accept her as a human deserving their respect or even their notice.
I think it took me a few weeks to stop wallowing in sadness and to finally stand up for my daughter, the end of the month she was born, when the doctors in the teaching hospital wanted to use her for their very own Down syndrome specimen, AKA lab rat. Cruel in their study of my daughter to the point of dehumanizing her. There was where the second A word came into play: ADVOCACY.
I simply put a stop to their very unkind scientific explorations. Test her for this, oh gosh, lets do this invasive test on her, how about this one...how about no. I told them, that was it, no more testing, we were stopping all the nonsense of trying to find abnormalities, if she presented with specific health issues, we would test, but not until then, period.
Being Meghan's advocate was and still is a full time job X3, besides caring for her like any mom would a tiny newborn, with cuddling, rocking, numerous diaper changes, and sore nipples from breast feeding. I called (being a stay at home mom at the time, my husband had a FT job) the agency to come here and determine she did indeed have a disability that allowed her to be served under DES/DDD. Next came the services coordinator Maria, and then the therapists, OT and PT at first. I did all the paperwork, was here for the home visits, was therapy Mom and I watched Meghan change and grow and learn with feisty determination. Which brings me to the next word ADORATION.
Meghan had such a strong spirit, she was funny, loved to be in the middle of everything our family did, and she loved us all so much. My love for her grew to adoration. ( Truth is, I adore all of my children)
Cancer entered our lives when Meghan was 2 years old. It was bad, I do not recommend a cancer journey to anyone...but I am always grateful for the miracle of my continued life. I can vividly remember praying the day I found out, "Please God, I cannot leave Meghan behind" for though the thought of leaving any of my family behind crushed me, I knew she may need me the rest of her life, but my other children would build lives away from me, with spouses and their own children. Meghan could have some of those things, maybe, she was so young, it was impossible to tell, but she would not be able to without some support from me, her advocate and her mother.
Years ticked by further separating me from the diagnosis, tests showed I remained NED. I was back working for a new fitness center after being dismissed from my job of 17 years for leaving too often for surgeries. I had a sense of "Now what will I do with my life?"
Then I learned something heartbreaking; there were countries that sentenced their citizens with Down syndrome to institutions for life. I found Reece's Rainbow in July of 2006. I do not think I stopped crying about those haunted faces for months, going back to the site again and again, and then the ton of bricks hit me. That brings us to our final A word for today ADOPTION.
Yes, the first time I saw the toddlers, I cried, I looked at Meghan and then back at them, and just cried. Deep down I knew, if people in America could get away with such inhumane treatment, they would do exactly the same thing, and we have before, while we should protect "The least among us" we often fail one another. The thought of adoption just did not occur to me, we are ordinary people making a modest living. Rich folks adopt, right, people who are childless adopt, but not people with 6 children of their own, do they?
So enter the ton of bricks, and my very own "Wait, maybe we CAN adopt too" moment. It was quickly followed by paralyzing fear. $?$?$? what about the money, who has that much money? I looked at the paperwork needed, a very long list of things-get a passport...clearances from police agencies (Would that speeding ticket I got in 2002 count against me?) I kept thinking that every journey begins with a single step, so just take the step, do it, just do it. Finally after a lot of soul searching I got the courage to send that first email asking about Eve. She was in Eastern Europe, and one of maybe 12 children, RR was new then. I got a message back, Eve was likely Evan, so I searched again and found a bright, happy girl with sparkling eyes who had a committed family the weeks before, but no longer did. What about her then? After all that I had to do the second hardest thing, I had to tell my husband what was in my heart...Thus began our adoption adventure!
We did not adopt the first girl we gave our hearts away to, nor the second, instead we brought Kara home on a blind referral. Silly sweet, wonderful Kara, and 5 months later, our equally sweet and very wonderful Amanda came home too.
So the answer then was yes; parents who are not really young, and have 6 children can adopt, speeding tickets do not count..and sometimes miracles happen.
We are birth parents to almost 11 year old Meghan (and Fred, Terry, Eric, Brian, and Julia...) Funny, most people assume we adopted Meghan because we are older. Ya know ancient, in our early 50's, yikes. I hate hearing "Are you their grnadmother". OUCH
We did not have a prenatal diagnosis, we did not seek one. We had 5 children born without any issues, so why should our 6th have any? Except somewhere in those seconds during her earliest cell division, her 21st chromosome got sticky and made 3 copies instead of 2. So in that 11th week of pregnancy when I got the surprise announcement that I was expecting, Meghan was already a baby with trisomy 21.
When Meghan was born and it was obvious to everyone from her facial features, hypotonia, and heart murmur, that she probably had Down syndrome, with her birth we learned the first A word. ACCEPTANCE.
For some parents acceptance takes a long time. It is not because we do not love our child, though I am sure there are cases where families simply cannot, not in the enduring way a parent loves their children, and those parents give their babies up.
We accepted and loved Meghan on sight, but I felt very sad and guilty about her being born with a condition that would mean the world (which is cruel enough for most of us anyway) would not accept her as a human deserving their respect or even their notice.
I think it took me a few weeks to stop wallowing in sadness and to finally stand up for my daughter, the end of the month she was born, when the doctors in the teaching hospital wanted to use her for their very own Down syndrome specimen, AKA lab rat. Cruel in their study of my daughter to the point of dehumanizing her. There was where the second A word came into play: ADVOCACY.
I simply put a stop to their very unkind scientific explorations. Test her for this, oh gosh, lets do this invasive test on her, how about this one...how about no. I told them, that was it, no more testing, we were stopping all the nonsense of trying to find abnormalities, if she presented with specific health issues, we would test, but not until then, period.
Being Meghan's advocate was and still is a full time job X3, besides caring for her like any mom would a tiny newborn, with cuddling, rocking, numerous diaper changes, and sore nipples from breast feeding. I called (being a stay at home mom at the time, my husband had a FT job) the agency to come here and determine she did indeed have a disability that allowed her to be served under DES/DDD. Next came the services coordinator Maria, and then the therapists, OT and PT at first. I did all the paperwork, was here for the home visits, was therapy Mom and I watched Meghan change and grow and learn with feisty determination. Which brings me to the next word ADORATION.
Meghan had such a strong spirit, she was funny, loved to be in the middle of everything our family did, and she loved us all so much. My love for her grew to adoration. ( Truth is, I adore all of my children)
Cancer entered our lives when Meghan was 2 years old. It was bad, I do not recommend a cancer journey to anyone...but I am always grateful for the miracle of my continued life. I can vividly remember praying the day I found out, "Please God, I cannot leave Meghan behind" for though the thought of leaving any of my family behind crushed me, I knew she may need me the rest of her life, but my other children would build lives away from me, with spouses and their own children. Meghan could have some of those things, maybe, she was so young, it was impossible to tell, but she would not be able to without some support from me, her advocate and her mother.
Years ticked by further separating me from the diagnosis, tests showed I remained NED. I was back working for a new fitness center after being dismissed from my job of 17 years for leaving too often for surgeries. I had a sense of "Now what will I do with my life?"
Then I learned something heartbreaking; there were countries that sentenced their citizens with Down syndrome to institutions for life. I found Reece's Rainbow in July of 2006. I do not think I stopped crying about those haunted faces for months, going back to the site again and again, and then the ton of bricks hit me. That brings us to our final A word for today ADOPTION.
Yes, the first time I saw the toddlers, I cried, I looked at Meghan and then back at them, and just cried. Deep down I knew, if people in America could get away with such inhumane treatment, they would do exactly the same thing, and we have before, while we should protect "The least among us" we often fail one another. The thought of adoption just did not occur to me, we are ordinary people making a modest living. Rich folks adopt, right, people who are childless adopt, but not people with 6 children of their own, do they?
So enter the ton of bricks, and my very own "Wait, maybe we CAN adopt too" moment. It was quickly followed by paralyzing fear. $?$?$? what about the money, who has that much money? I looked at the paperwork needed, a very long list of things-get a passport...clearances from police agencies (Would that speeding ticket I got in 2002 count against me?) I kept thinking that every journey begins with a single step, so just take the step, do it, just do it. Finally after a lot of soul searching I got the courage to send that first email asking about Eve. She was in Eastern Europe, and one of maybe 12 children, RR was new then. I got a message back, Eve was likely Evan, so I searched again and found a bright, happy girl with sparkling eyes who had a committed family the weeks before, but no longer did. What about her then? After all that I had to do the second hardest thing, I had to tell my husband what was in my heart...Thus began our adoption adventure!
We did not adopt the first girl we gave our hearts away to, nor the second, instead we brought Kara home on a blind referral. Silly sweet, wonderful Kara, and 5 months later, our equally sweet and very wonderful Amanda came home too.
So the answer then was yes; parents who are not really young, and have 6 children can adopt, speeding tickets do not count..and sometimes miracles happen.
Tuesday, August 30, 2011
In memory of Kim
Kim was a member of an on-line support group I moderate. She has been my good friend since 2003, when we shared the sorrow, the joy, the pain of loss, and the celebration of living and life during our cancer journeys.
This morning we lost Kim to cancer. She was respected and loved by so many of us.
I made this image from a picture she shared with us.
I hope she is galloping across the clouds on her beloved horse, free of care and pain forever.
Monday, August 1, 2011
End of summer update
We have had a quiet and hot summer. We chose to hunker down and just spend the time relaxing as a family.
We have some very exciting upcoming events, in no particular order:
We are expecting our first grand baby this November, Terry and Anna are going to be parents!! We are thrilled. (oh, and the baby is a girl)
Eric and his fiance Melissa have set a date for their wedding and they will become man and wife in September. They are just perfect for each other! We will also have a new granddaughter; Melissa's daughter Megan. Which is also so exciting to us. She is a wonderful young woman.
Julia got a puppy, she named her Sheba and we are all having fun playing with her (and housebreaking her, oh joy!) Julia is taking exams to get ready for community college!
Fred, our oldest, is saving to buy his first home, a very exciting prospect, but daunting. So much to think about!
Brian is in two plays this summer-fall, Sweeney Todd and Chicago. He is so busy I am not sure how he does it all. Sweeney opens next week, if you live in Tucson, you have to see it, it is going to be amazing TICKETS FOR SWEENEY
Amanda is now a 100% self-feeding girl. We announced to a few friends, and they looked at us like we were making a huge deal out of something all kids do, but they just do not understand the struggle we have had getting her to hold a spoon. She is so awesome sitting at the dinner table spooning the food into her little mouth. She spills a lot, but this is such a huge step for her!
Kara is growing so much, she grows out of sizes in 4 months, I have never had a child grow like she. She is going through a stage where she hits herself in the head when she gets frustrated. We spend the day telling her to be nice to herself. I wish we knew what was wrong, it hurts us when she does that to herself, but she cannot communicate well enough to tell us why she is so upset.
Miss Meghan is growing up on us, her shape is changing into a young woman's and we just are not ready for that to happen, I have to be honest and say, I find it kind of unfair that she is delayed in everything but that. She is so much like a 6 year old, of course she is also a 10 year old girl and has the life experience of a 10 year old. I just wish puberty would go away for a few years and let her catch up to it, you know?
I have been mentally gearing up for another year of home school for the youngest girls, they go to on-line charter AZVA, so I do not have to buy curriculum, but we need to get the work area cleared off. School starts Wednesday. Kara and Amanda are in 1st grade and Meghan is in 5th. They are not doing the work from those grades, they do the work their IEP specifies, I am hopeful that Kara and Amanda will be better able to complete some tasks this year, last year they were still so behind developmentally, but both have had some good progress this summer in self help skills, so fingers crossed.
Tom will be back at his regular job in a couple of weeks, the school year for him starts a little later than AZVA. As always, we will miss him being home with us.
I will not be sorry to have the heat of summer behind us, the monsoons that used to drench our city daily barely produce any rain now, we had three nice storms and nothing, all it does is raise humidity and make us miserable with our evaporative cooling, Fall, please hurry!!
We have some very exciting upcoming events, in no particular order:
We are expecting our first grand baby this November, Terry and Anna are going to be parents!! We are thrilled. (oh, and the baby is a girl)
Eric and his fiance Melissa have set a date for their wedding and they will become man and wife in September. They are just perfect for each other! We will also have a new granddaughter; Melissa's daughter Megan. Which is also so exciting to us. She is a wonderful young woman.
Julia got a puppy, she named her Sheba and we are all having fun playing with her (and housebreaking her, oh joy!) Julia is taking exams to get ready for community college!
Fred, our oldest, is saving to buy his first home, a very exciting prospect, but daunting. So much to think about!
Brian is in two plays this summer-fall, Sweeney Todd and Chicago. He is so busy I am not sure how he does it all. Sweeney opens next week, if you live in Tucson, you have to see it, it is going to be amazing TICKETS FOR SWEENEY
Amanda is now a 100% self-feeding girl. We announced to a few friends, and they looked at us like we were making a huge deal out of something all kids do, but they just do not understand the struggle we have had getting her to hold a spoon. She is so awesome sitting at the dinner table spooning the food into her little mouth. She spills a lot, but this is such a huge step for her!
Kara is growing so much, she grows out of sizes in 4 months, I have never had a child grow like she. She is going through a stage where she hits herself in the head when she gets frustrated. We spend the day telling her to be nice to herself. I wish we knew what was wrong, it hurts us when she does that to herself, but she cannot communicate well enough to tell us why she is so upset.
Miss Meghan is growing up on us, her shape is changing into a young woman's and we just are not ready for that to happen, I have to be honest and say, I find it kind of unfair that she is delayed in everything but that. She is so much like a 6 year old, of course she is also a 10 year old girl and has the life experience of a 10 year old. I just wish puberty would go away for a few years and let her catch up to it, you know?
I have been mentally gearing up for another year of home school for the youngest girls, they go to on-line charter AZVA, so I do not have to buy curriculum, but we need to get the work area cleared off. School starts Wednesday. Kara and Amanda are in 1st grade and Meghan is in 5th. They are not doing the work from those grades, they do the work their IEP specifies, I am hopeful that Kara and Amanda will be better able to complete some tasks this year, last year they were still so behind developmentally, but both have had some good progress this summer in self help skills, so fingers crossed.
Tom will be back at his regular job in a couple of weeks, the school year for him starts a little later than AZVA. As always, we will miss him being home with us.
I will not be sorry to have the heat of summer behind us, the monsoons that used to drench our city daily barely produce any rain now, we had three nice storms and nothing, all it does is raise humidity and make us miserable with our evaporative cooling, Fall, please hurry!!
Wednesday, May 4, 2011
Pictures
Julia in her beautiful prom dress, she looked so grown up and lovely 
Meghan, our pretty princess, Meghan is not cooperative about pictures these days
Miss Kara , she is growing so fast
Kara and her post smile because the camera took too long to click look, isn't she beautiful?
Pretty one of Amanda,
Playing with one of the dollies
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