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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

Sunday, May 30, 2010

Saying goodbye to another breast cancer warrior

An image designed by Kim Foltz in memory of Kathy

May 29th, I and hundreds of others lost a very dear friend to breast cancer.

Kathy was an exceptional person, always positive, caring, never had a bad word to say about anyone. She loved her family, even with stage 4 cancer, she rode her bike around Tokyo and attended all of her children's functions. It was not until December 2009 that she was forced to slow down a bit, brain mets....

Kathy and I never saw each other face to face, but we had many meaningful conversations about our common foe; breast cancer. She taught me a little about being an American living in another country, and educated a few of us on life in Japan.

She was an earnest supporter of our adoptions, and helped me be more positive when things went wrong, supporting me through the losses of two little girls who led us to the two daughters we have now.

As my Grandmother would have said; Kathy was a gem. This song brings to heart how it feels to say goodbye forever to friends, I will be OK, but I feel like a little piece of my heart dies every time I lose another sister to breast cancer. And each time, it gets harder to bear.

Please remember Kathy's children and all those who cared for her in your prayers.

Without you, the ground thaws
the rain falls
the grass grows

Without you,
the seeds root
the flowers bloom
the children play
The stars gleam
the poets dream
the eagles fly
without you

The Earth turns
the sun burns
but I die, without you

Without you, the breeze warms
the girl smiles
the cloud moves

Without you,
the tides change
the boys run
the oceans crash
The crowds roar the days soar
the babies cry
without you

The moon glows
the river flows
but I die without you

The world revives
colors renew
but I know blue
only blue
lonely blue
willingly blue

Without you

Without you, the hand gropes
the ear hears
the pulse beats

Without you, the eyes gaze
the legs walk
the lungs breathe
The mind churns
the heart yearns
the tears dry without you

Life goes on
but I'm gone'cause I die, without you
without you
without you
without you.....

Thursday, May 20, 2010


Julia ready for her Junior prom! She looked beautiful and they had a really good time, even though she had to drive the minivan that night...:)
Amanda still sporting the barrette I put in her bangs when I am feeding her. She tends to
drop her chin down and her hair falls in the food. I am thinking of growing out her bangs and
just putting her hair in ponytails. Amanda is doing well, she is so healthy, and I am grateful
for that. She is getting taller, wearing larger clothing now, all three little girls are due for
their yearly physical, and we will find out how much she grew this year. She will likely
never be a big girl, but that is OK.

Our sweet Meghan when she was 1 month old. I wish I had Kara and Amanda's baby pictures.

I love this one of Meghan, I can see those big blue eyes she had when she was an infant. I have a feeling her little baby face will be seen less and less as she nears all the changes puberty will bring, I am NOT ready for this, no I am not. Yes, she has food on her chin, LOL

I took this when Amanda was sitting in the shade and it was too dark to leave in color, but
I could not skip this adorable little smile, could I? Amanda is trying to walk, but I think she
has lots of muscle development to gain before she does it all the time. She can stand up and
take 8-10 steps, but prefers to scoot and lately, crawl, to get where she wants to go.

When they are not bickering, these two are inseparable. Just like sisters! Kara can be rough
and Meghan is learning to stand up for herself, Kara is such a sweet little girl, and the best cuddler ever, but sometimes, oh boy, you wonder where the aggression comes from. Lately
she has taken to crying while looking at herself in the mirror, she is learning about herself ,
she is quite an actress!
Silly Kara, she is getting so tall and so big! She has more teeth in that little mouth than I have ever seen, and great teeth too, she has yet to have a single cavity. She loves to brush her teeth , I think it is the vibration of the toothbrush, she will brush for 5 minutes if we let her.
Amanda, our little oompa loompa, I am hoping she will continue to eat more table food and less baby food. She cannot self feed yet, but she has learned to chew softer foods, so that is great progress for her.
Meghan loves posing for pictures, she is growing up fast, I know from our other 5 older kiddos that childhood flashes by, we need to remember to cherish it!

Meghan is losing so much hair alopecia areata, I asked her if we should cut the length and she said no, but her hair is so thin right now, some of it feels dead too, so I know the hair follicle has died and that hair will be gone soon, but she is also regrowing hair in places where she lost some. She also has no hair on her arms or legs, so we are wondering if aolpecia totalis is awaiting her. Meghan has always loved hair, always running her hands over mine and her therapists . One does not like it and it makes me feel mad and sad at the same time, she is firm, yet gentle, so I say nothing, but it is keeping Meghan from bonding with her. By trying to maintain a certain aloof (thinking professional) demeanor when they are working with children is to their detriment in my opinion. They will never be completely trusted by their clients.

Grumpy mommy

The last couple of days have been me in grumpy mommy mode, with my three youngest just doing everything they can to get into trouble. For the highlights; breaking numerous things, I just threw the items away instead of thinking about how to fix them, spraying sisters in the eye with “safe” carpet cleaner (Meghan to Kara, rinse, rinse rinse), pooping and deciding to paint themselves with it and then decorating to floor too (Amanda).

Then there were the two electronic devices that were put into a sink full of water (Kara),they still work, the numerous dollies and stuffies I find in the same sink, see Kara is confused, she thinks her toys, cups, bowls, and trash can only go in two places; the trash or the kitchen sink. Often the bowls are in the trash and the toys are in the sink. Giggling Elmo did not appreciate the kitchen sink, but it was far better than the toilet, and how many times can a electronic toy be immersed in water and disinfected?

Kara and Amanda got into the dogs water bucket outside, both of them smelled like wet dog, such a glorious stench! Amanda thinks it is such good sport to throw cat food all over the floor, or kitty litter, dear heavens, yuck. She seeks it out and giggles in joy as the smelly pieces fly.

Kara throws everything and I do mean EVERYTHING, and mommy has just had it, do you think they know I am tired and that is why they are being bratty? At first I patiently deal with it, (redirection, redirection, redirection) but there comes a point where I yell, yes, YELL, “STOP DOING THAT”, I know I flunk parenting 101 every time I resort to raising my voice, and it only makes the girls sad, and it does not stop the offense they were yelled at for. This week I am just fed up with the constant supervision, never being able to just relax and have peace and quiet for even 5 minutes. My girls can create a huge mess in seconds, it is an art form for them, if you have young children; you know what I mean.

So in the midst of chaos, my son Brian and I giving baths and cleaning up the poo off the floor (Brian is the girls new respite worker, and this week was his first week, and did he ever earn his pay!) the phone rings, it is my dearest friend, she is very familiar with my two youngest girls fondness for playing in poo, as I have had to hang up dozens of times to clean up somewhere, usually the wading pool, and can I say ICKY POO. Cleaning up poo all the time is not my favorite pastime. So I tell her we are having quite a morning, and my son is learning quite quickly how fast his sisters can turn calm seas into a tsunami. As I am telling her about the morning she says it, the dreaded phrase I just hate hearing: “You know what, you are a saint”. Oh no, OH NO, I surely am not, and she says very sweetly “You are one to me”.

I hear this so often; you are a saint, an angel, one of God’s angels and so on and I am not, I am imperfect and challenged and trying my best not to drop the ball. Now I know these folks mean well, but to quote a line from Julie and Julia; “Stop calling me a saint, it just makes me feel like an a**hole”.

I am not anything near a saint, and it does make me feel small every single time a stranger or close friend says it to me. It implies I am Godly and kind, understanding, and patient, and while I can sometimes be those things, I am also frazzled and grumpy.

Being the mom of children who learn everything SLOWLY, need a lot of repetition and don’t exercise good judgment (hey, isn’t that most kids?) can be draining, there are days I wait impatiently for my husband to come home so he can take the reins, and I can have some peace, but ladies, you all know, you still have to do half of everything anyway, right? My favorite times are when my sweet hubby takes all three little girls shopping so I can just sit and enjoy the quiet. Then an hour later I miss everyone, LOL. I need a mom myself, one who will come and tell me to go to the store, hands me $50 and pushes me out the door, because I never leave this house. I am suffering from too much weight and too little clothing because nothing fits, I wear the same three things over and over again and I am so tired of them and being overweight, another reason I need to get out, I miss my exercise classes!

So Brian can come and help with his sisters now, and mommy needs to learn that she can leave them here and go someplace else instead of staying home and trying to get laundry done while he watches his sisters, someone has to watch my busy rascals while I am outside, they just get into too much trouble otherwise. It is a tremendous help to have him here to do that, but come on, it is not fun for me, its housework!

My goal FOR MYSELF is to find a gym I like, enroll and get out 3X a week to a class. It will solve my weight issue (in two years LOL), my need to interact with people who can converse with me, and it will be time away from my little girls, which will make all the poo and repetition OK, or that is my hope. I suppose I can also walk around the track at the park and that is free, but I need to be around other adults too.

I have forgotten how important it is for moms to have time alone, it has been 2 1/2 years since I was away from home during the day and it was not for a doctor’s appointment or an evaluation for one of the little girls. I knew I would sacrifice my personal free time when we decided to adopt Kara and Amanda, and we also school Meghan at home (Kara and Amanda are enrolled in on-line charter school Kindergarten for the fall too), which is very stressfull and is blessedly done for the summer, Yay!! However this week has shown me that I cannot pour from an empty vessel and it is time for me to take better care of myself. It will make everyone happier I am sure, because this week, I did not like myself, not at all.

What Would You Do?

This video is making the rounds on blogs of other parents who have children with Down syndrome. I had a few FB friends say they would not watch it because it was appalling, and exploited the young actor in the film. I disagree, as he was a willing participant in the experiment. I do believe though, that it had to hurt to hear what the belligerent actors said regardless of being in on the scheme, how could it not? I wanted to give Josh a hug afterwards.

I think it showed how most people respond to verbal attacks on someone with a special needs. They look away and try to get away as fast as possible. Likely because so many people are afraid, this world can be dangerous and you never know what kind of reaction the disgruntled or rude or simply ignorant person may have. Does he have a gun? A knife?

HOWEVER, I know how I would have reacted, I would have been in the persons face and defending the worker. I have always been protective, but even more so now. What would you have done, would you have said "I do not want to get involved" ? Next time you see something like this happen, think of this little video and how it made you feel to sit and watch people do nothing.

Friday, May 14, 2010

Please AZ voters, vote yes on Proposition 100

You can click on the picture to enlarge it

Wednesday, May 12, 2010

Living in Arizona

Arizona is in the news again, and not for any good reason. I know that there are folks firmly on each side of the immigration bill debate, and I hate that people are proclaiming Arizonans as racial bigots, because folks, that simply is not true. Furthermore I would love to point out to the myopic that the people of Arizona did not pass the immigration bill, our government did so without nary a query to it's populace. We believe it was a knee jerk reaction to the murder of a prominent rancher who lived near the Arizona and Mexico border. Of course our porous borders have been an issue for decades.

For the first time in a long time I am ashamed to tell people that I am from here...

Tuesday, May 11, 2010

What do you say when you can't say anything?

(I am going through drafts and finally posting them)

Truly, so much has been going on in our lives and most of it is something we cannot speak about for various reasons. So I log on to write a blog post and just log off. When our lives are enmeshed with others, we have to honor their privacy.

The school year is winding down for all of us, I am so relieved Meghan will have a break from her online school, because it means I will too. I have a constant inner dialog going with myself about schooling at home, "Meghan needs to interact with same age peers" and "Our school district CANNOT meet my daughters needs, and she is not safe in their care". I never set out to be a homeschooling mom, I never thought I would be, but until our district can clean up their act, I cannot entrust another child to them, especially not a child with special educational needs.

Meghan's alopecia has progressed on her left side again, she is nearly bald on that side. Before now she did not seem to notice, but I spied her with a mirror last week, and she was looking up at that huge bald spot with tears in her eyes. I told her she was so pretty, she smiled a tiny smile at me. My heart broke for her and I choked back my own tears, doesn't she have enough to deal with without this? Now I know that hair loss is not life threatening, and I know it could always be worse, but this is my sweet girl and she is sad about how she looks. A very insensitive person asked me why I cared, since Meghan has Down syndrome, and already looked different, who cared about her hair? Some people are just so clueless, truly. Meghan is a little girl first, and girls like to feel pretty. It is likely the hair will come back again, I keep praying for remission of her alopecia, perhaps if more joined me the prayer would be answered.

I am at wits end with Kara's obsession with food, I have taken to putting heavy objects in front of the fridge to prevent her from opening it repeatedly. She does not seem to know when she has had enough food and she is getting too heavy. I have asked her OT and ST if they have any suggestions to get her to stay away from the kitchen, they all say they are trained to help kids eat more, not less. Any suggestions? It is 12 hours of constant supervision and it is taking time away from her sisters. I am sure she gets weary of hearing "Out of the kitchen Kara" . I have taken to making her sit on the floor just outside of the kitchen to wait for her meals. She wrings her hands and whines if she does not get her food often enough.

Saturday, May 8, 2010

Prayers for a courageous little girl please

She is truly an amazing little girl, living for years with a heart that should not have sustained her life and now surviving open heart surgery which has been wrought with so many complications. God has truly been with her, please pray for her and her family.

Beautiful artwork featuring children

Such a beautiful Video

I have a voice

Gifts video