Ignore the Crazy

2009-02-23T21:11:00.000-08:00

So. Our family has been sick for a long, long time.

I believe that the throwing up started Christmas Eve and we haven't had a fully healthy family since then. It is almost comical. Everyone will seem on the upswing and three seconds later someone has a river of green coming out their nose. We actually all made it to church one week and it was announced as the "happy minute moment". I am not embellishing at all when I say that about 20 minutes after I got home from church I had a sore throat and was so sick I couldn't get out of bed for several days. Who ever gets that sick anymore? We even got Maria sick. I think it might have been strep, but I didn't get myself to the doctor to see. In about 10 days I could swallow again and found myself 10 pounds lighter for my troubles. We just finished a round of coughs and colds and the little girls have not been in therapy for two weeks (we went back today, but big sister has a 104 fever and is bed bound with the flu. I sure hope she shares it with ALL the kids..).

The point of all this is not to whine about how we have been so sick. It has actually provided a refreshing change of pace for us. It has been like a vacation-with snot. I was laughing with a friend about how the kids must be spreading each others germs. We wondered if they were licking each others noses in the middle of the night or spitting in the bottles. Then today I randomly walked into the bathroom today and found Jacob. With his head in the toilet. With his head in the toilet as if he was bobbing for apples. Luckily it wasn't apples he had in there, just the hair brushes, the lotion bottle and everything else you put your hands on in the bathroom.

So, while I joked about the funny ways my kids could be infecting each other, never in my wildest dreams did I think that my germophobe son (heaven forbid there be a hair in the bathtub or that he get his hands STICKY) was marinating the downstairs bathroom in bog water. I can't even think about it. I am trying to find the humor in this, but right now I am too busy cloroxing every hard surface in the house.

I am beyond asking the question "why" (and just in case you are curious, the answer I got was "I don't know") I just want to know what kind of thoughts lead up to the point where the end result is to dunk your head in the toilet. We may never know.

I can't decide to call this a good day or a bad day. Good days generally aren't applicable if anything unusual with a toilet has been involved.

I think I will sleep on it.

*Update. After a reasonable night's rest and an episode of "The Bachelor--The Women Tell All". I have concluded that it was a GOOD day. If you are familiar with my wild man Cubby, you know that this is nothing. It didn't involve poison, sharpies, stitches or police..... What a GOOD day!!!

** Update/Update. I just remembered that a few days ago while we were visiting my in-laws for dinner, Cubby bounded into the dining room with a bunch of rat traps in his arms. The old fashioned kind that spring shut (like in the cartoons). I have no idea how he didn't hurt himself (and also, ewwww). That would have involved poison, stitches, broken bones AND the police (after we go three or four times in a year we have to meet with the hospital social worker--because, honestly, who has to go the ER as much as we do?).

**Update/Update/Update. I have had a few query's about the silhouettes. I did them in about 4 seconds in Photoshop. It is super easy. Want one? Check back in a few days. I'll post a tutorial for those who have Photoshop and how to get one from me for those that don't. It will involve a small charitable contribution of your choosing.

Just don't rock the boat....

2009-02-20T21:15:00.000-08:00

I have had several inquiries recently asking how I am doing. My lack of blogging has annoyed some people (sorry mom) and worried others. Since the last time I took a big, unannounced blogging break was during the DARK TIME it is a fair concern.

Actually, things are fine. Better than fine, they are awesome. They are doing so well that I have to pinch myself to believe it. In fact, I think that was half the problem. I have been on such an even keel I don't want to do ANYTHING to mess that up. It is like my life is a ship that is packed to the absolute top and we are cruising along at top speed. Everything is fine unless someone upsets the balance. Is that to vague of an analogy? I guess what I am trying to say was that trying to do extra things like blogging, reading or taking a shower (kidding, kind of) puts me off my game.

But, since my baby is almost one (next month, don't remind me..I can't stand it) it is time to re shift the boat. Derek even bought me a laptop so I could update this site regularly while I am in my car or waiting at doctor appointments. I will put up a bunch of pictures to show the relatives that my children are not just alive, but growing and thriving and hope that will buy me some mercy.

I am back.

This girl is HEAVEN. I absolutely cannot get enough of her. There will be lots of Gracie posts soon. Recently what I can't get over is how much like Lulu she is, except the whole "scratching her head with her own foot" thing. She continues to delight the children with her party tricks.

Miss N is a little girl now, there is no toddler left. She is walking, running and talking (heaven help us can she talk). When I see this picture I am struck by how beautiful she is (and how awesome my braids were....). Nosi is still globally delayed, but spends most of her time acting like a 2 1/2 year old. We are also seeing more and more of ...

... this face. Good times ahead.

This guy? Not much has changed. He continues to be charming and funny and is getting less destructive by the day. We are not sending him to Kindergarten this year (he is right on the cusp) so he has another year in preschool to refine his stand up act and practice all the funny faces to make his teacher crazy. Lucky her!

Lauren is too grown up for me. She chooses her own clothes, has opinions about her hair and is generally a great helper and sister. I was looking at pictures of her the other day and realized that my tiny girl is gone. I didn't even notice that the new big girl Lulu had replaced her. Gulp.

There is a tidbit. I am working on some more posts. I am also going to start posting about the progress of Miss Gracie. I have talked to some parents who also have children with Down Syndrome and we were saying how there are only a few blogs that really give people some concrete insight into what it is like to raise our kids. We need these kinds of blogs, not for everyone, but for every family that finds out prenatally that their child has Down Syndrome and is trying to figure out what to do. Or, for the family that finds out at birth and feels overwhelmed with understanding just how exactly their lives are going to change. There needs to be more places where they can see what the developmental delays entail, how the therapies work in the context of family life. Mostly I just hope to show any one who reads here that having a child with Down Syndrome is both the biggest deal in the world and no big deal all at the same time. So many of these pregnancies are terminated and I just think that if people KNEW how easy it is to parent and love these kids, they would have just that much more information to add to their decision basis.

We are off to do something fun this weekend. What are your plans?

Mom, I need to be a rockstar....

2008-10-10T15:00:00.000-07:00

Those were his exact words to me. In fact, they have been his words for the last six months. This boy has been BEGGING for a guitar for his birthday ("a REAL one mom..."). I won this guitar in the Nie Nie Day auction (thanks Oh Judy and the guys at Maroon 5!!!). No, I am not letting him carry this one around the house (for that, he gets the 30$ Target guitar, which is a good thing since I saw him hitting baseballs with it today....). But, I DID give him this one. He is obsessed with it and always asks me to hold it. He even knows how to shake his money maker while holding it. First things first.

After he opened it, he told me that he needs to find some other "big boys" and get on a stage and "sing like Rock Stars......" and then he proceeded to sing "Slow Ride" by Foghorn. You know, the one from Guitar Hero. Granted, his whole guitar exposure is from Guitar Hero (this is also where his exposure to swear words is from, ahem.....).

I think we might have a rock star on our hands.....

This one is for you, Pippin...

2008-10-08T19:23:00.000-07:00

It seems like every day I think of something to write about. I have these great posts written in my head and then by the time I actually get in front of a computer, poof, they are gone. Then I give up and go to bed. Makes for a great blog. I am DETERMINED to blog more. I miss it. I need it.

I promised the Baked Potato Soup recipe and Pippin reminded me of that...so here you go. I am also getting some Design Mom traffic (Hi Design Mom readers!!!) because she linked me and I want them to have something interesting to read.. One thing you should know about me is that I don't measure things very precisely. That is why I stink at baking. I also tend to talk out recipes instead of just listing them. So, hang in there with the explanation, the end result is worth it.

Baked Potato Soup

I got this recipe from one of my favorite people, Miss Suzi J,who refuses to have a blog or comment on one. That is probably a good thing because she is really talented and would kick all our blogging behinds....

This soup is a basic roux with lots of good things added in. Add what you want, in the amount you want. The only thing that is really fixed is the roux. So here is the basic ratio. This can be a base for ANY cream soup. I usually plan on one cup of soup per person, so if you want to feed 8, use 8 cups of milk, 8 T Butter and 8 T flour, etc....

ROUX:

1 T Flour

1 T Butter

1 cup liquid (usually milk, or half milk and half stock. Or use all cream....just don't use all stock or non fat milk. There needs to be some fat in it to make it creamy).

Melt the butter in a large stock pot. Add flour and stir for about 2 minutes. This will cook the flour slightly and take away the raw taste. Add the liquid one cup at a time and whisk until smooth. That is it. This will thicken after simmering for about 15 minutes.

The thing that makes this taste like a baked potato is that there are, wait for it, baked potatoes in it. If you do this step ahead of time, this is a very fast meal to throw together.

6-10 med to large baking potatoes

Bake the potatoes in the microwave or oven. When they are fully cooked and cooled enough to handle, scoop out the insides. Mash or mix up so that most of it is in bite sized pieces (but not too small, it will break down a bit). I will bake a whole bag and then scoop them and freeze them. They freeze really well. One or two bags gets us through the whole season...

Add the potatoes to the roux. If you let this simmer a long time, the starch in the potatoes will continue to thicken the soup. This is fine. You can adjust by adding more liquid later. You can control the consistency.

Bacon

Onion

Garlic

Shredded Cheese

8 oz Sour Cream

At this point I also add bacon or ham. If you use ham, be aware that it will be quite salty and you will not need to salt this soup. I usually buy bags of already cooked and crumbled bacon at Costco and add a bunch. I also will cook up some onions and garlic in another pan (or if you are really lazy, do it in the 'melt the butter" phase of the roux) and add that too. You can even add carrots, corn, etc, etc. The sky (and the adventurousness of you kids) is the limit.

Right before you are ready to serve the soup, add a handful of shredded cheese (I use white cheddar b/c I like the soup to stay white and not get yellow-ish, but I am crazy like that). Any hard cheese will work; cheddar, mozzarella, jack, Gouda, etc, etc. Add the sour cream at this point too. Give it a stir and you are ready to go!

I serve this with bows of bacon, sour cream and cheese on the side so you can top it any way you want. This soup gets lots of compliments. People ask for the recipe and then have a heart attack when they see it has about a half a pound each of sour cream, butter and cheese in it!! For our family of six, I usually do 8 T of butter, 8 T of flour and 8 cups of liquid w/ about 2 cups of cheese and 2 cups of crumbled bacon. I like my soup thick w/ big chunks of potato in it. This is enough too feed us and give us several lunches worth of left overs.

Enjoy!

Guest posting today....

2008-09-22T13:48:00.000-07:00

Come check out my post at Light Refreshments Served today ( http://lightrefreshmentsserved.com/) . They asked me to write about my experience with the Deaf culture. Long before I was the lady who knew all about adoption, trans-racial families and Down Syndrome, I was the lady that knew sign language. Not just any signed language, I knew BRITISH Sign Language. A language that is TOTALLY different than American Sign Language and is pretty much useless if you don't live in the UK. I served a mission for my church in the UK learning and using British Sign Language. In our church you don't choose where you go, you just sign up (missions are optional; girls go when they are 21 and boys fo when they are 19). You often don't know much about where you are going beyond the fact that it will be an adventure and you are willing to do your best. For more information about what missions are, you can go to http://www.mormon.org/.

I shared a few mission experiences, but there were MANY more that I couldn't share in the short amount of space that I had over there. Here are some more things that I DIDN'T share:

--how the sign for "very" is quite similar to the sign equivalent of the "F" word. More than one missionary thought they were saying that they were "very, very" something or another and really were saying that they were "f*@&ing f*@*#ing" something. Poor missionaries, but unintentional swearing is almost ALWAYS funny.

--one time we thought that we had a really solid baptism. We had taught the lessons to a deaf gentleman (and it had taken him over a year to decide to get baptised). He was so happy on his baptism day, he bought us a statue of the Virgin Mary (not something that we worship in our dogma) and told us how happy he was to be a "Catholic Mormon". Something clearly hadn't quite sunk in somewhere along the way.

--the sign for "baptised" looks very similar to the sign for "bury". We usually got a quick "NO" when we asked people if they wanted to be baptised. They thought we were asking if they wanted to be buried on a certain date. Frankly, I would say no to that too. People must have thought we were c-r-a-z-y.

--On the same vein, when I lived in East London, we would knock doors and ask people if they knew anyone who was Deaf. More than once we were sent to a house where someone had recently died (and once during the actual wake!!!). Then we realized that the East London accent has folks usually drooping the "th" sound for an "f" or 'v" sound. So, they thought were asking for someone who was DEATH. Apparently in East London they don't bother much with grammar either (because that clearly makes no sense either). I am surprised we didn't get more than strange looks.

--I met my husband while we were both missionaries. We didn't date each other out there (missionaries don't date while serving..well, they aren't SUPPOSED to....). We got reacquainted when we got home, but now I have to forever tell people that is how we met and then explain that missionaries really don't date, but that we met later, etc, etc, etc.

--I still use BSL to this day (that us why at the beginning of this post I said it is ALMOST useless if you don't live in the UK). There is a family in Palo Alto that moved to the US from England and they are deaf. When I see them in Walmart (always in Walmart) they sign with me in BSL. I am getting rustier and rustier as time goes by, but if I want to brush up, I can just head for Walmart and at some point I will see them. Weird, but true.

--I never taught my kids sign. Even with all the baby sign craze ("It's Signing Time with Alex and Leah" anyone? anyone?), I just didn't do it. I guess I was too lazy. The irony? The whole family needs to learn sign now b/c we will use it with Gracie. Kids with Down Syndrome have a harder time learning to talk and often ASL is a good bridge for them. So it is a matter of getting the big kids (and husband) up to speed so we can talk with her as she learns to talk.

Writing that post got me thinking about mission stories. I have a few more I can pull out of my hat, but I am going to go clean out Lauren's room. It is time for the Last Resort again in our house...... dum, dum, dum.......

Happy Monday to you too......

2008-09-15T19:37:00.000-07:00

This is our new 8 year old. I love how all the pictures after 2nd grade have awesome snaggle tooth smiles. We took some pictures on the day of Lauren's baptism. She wanted to do a "model" shoot, so we have lots of pictures that SHE loves, but not exactly the kind that we put on the mantle. I can't wait to show them to her when she is about....16.

We had our first autumn meal today. Baked potato soup and homemade bread (don't get too excited, I still stink at bread, this was the box mix..but it worked!) On Monday's Lu comes to the grocery store with me and helps me to do the weekly shopping. She gets to decide what we have for dinner and helps me make it and usually the dessert. She made pumpkin pie tonight. Everyone hated it. Strike pumpkin pie from the Thanksgiving table for the next 25 years (that just leaves more room for pecan...).

I have been listening to the soundtrack of Rent these days. How did I miss this the first time around? I am not embarrassed to say that I LOVE show tunes. Hand me a soundtrack and I will learn it, sing it and teach it to my children (Lu had the entire Chicago soundtrack memorized by age 2). So, the summer of '08 is the summer of Rent. I think that the fall will be ..... hmmm.... Into the Woods........ my kids love that one...

What I did(n't) do this Summer

2008-09-12T08:10:00.000-07:00

Sweet, sweet Friday.

A few days ago the weather turned (it will turn back in a few weeks. It is a trick that autumn likes to play on us, but she usually waits until we have put all the summer clothes away). We have been having really hot, heavy weather here and a few days ago we woke up to that cold smell in the air. You know how sometimes 65 degrees in the spring will have warm undertones and the promise of warm weather to come? In the fall, it is the same 65 degrees but it feels like there is a snap in the air and everything just feels more pumpkin-y.

Every week has been busier than the rest. I keep waiting for things to settle down, but they don't seem to, so I am changing my mindset to just think that this is the way it will be. I guess that is OK. I am keeping iTunes in business with all the podcasts and books on tape that I buy. I am spending so much time in the car, I actually have a pillow and blanket in there so I can catch a snooze while the kids are in various meetings. Buying a minivan was the best money spent EVER. We were able to switch a few of the girls appointments around. I used to have to drive home during rush hour after attending a class with Norah. It took me 60-90 minutes to travel a grand total of 16 miles. Now I have that class in the morning. I can't say enough about how wonderful the caseworkers, teachers and Early Development staff have been. The are bending over backwards to accommodate us because we have the two kids in the program. I have seen them do it for other people too. What a blessing this center is to us.

I have had some interesting comments, conversations and requests from some readers. This made me so happy--because it means I still have readers! Hurrah for comments and readers! Several people have asked what I feel about Sara Palin (I was even interviewed for the newspaper--but I didn't get put in the article b/c I don't think that I was the kind of mother he was looking for. Note to newspaper reports, Mormon does NOT equal evangelical. We are similar in many ways, but not quite the same...). I have a post about that. I also had an interesting experience that helped me come to a more healthy place about Miss Grace. I had a reader contact me. This reader and I have a LOT in common. We each have three kids (one bio and two adopted, black kids--one of whom has some development issues). She found out that she was having another bio child and early tests came back showing a higher than normal possibility of Down Syndrome. She contacted me to ask me some questions and in the process of emailing her, I was able to figure out some things that have crept up on me. I don't mean to do this as a tease, but I just wanted to get this down so I don't forget.

Right now I must go and do battle with my house. I decided to skip taking Jacob to preschool today (45 minute drive there, both the girls hanging out in the park with me for three hours on a blustery day, no thanks). I have laundry and dishes to do, fridges to clean, closets to straighten, beds to make, hair to do (mine and Norah's), children to spend time with, etc, etc, etc. I have a feeling that I will only get one or two things on the list accomplished. That's OK. It is nice to have a down day around here.

Hope you all have a great Friday. I will leave you with a piece of homework I found in Lauren's backpack today.

What I did this Summer (this is word for word--spelling intact)

This summer I went swiming and spent a day at my fierd Cameron he's so nice he has a 1st grade brother and a 3 year old brother named Ryly and 1 year old sister named kaly and I never got to go to the beach.

I like to read.

Hmmm. Glad you had so much fun with Cam, Lauren. I guess all that time/energy/money we spent visiting Utah, going to museums, playing with friends, attending fun parties, throwing fun parties, getting baptized, going to the Giants games, playing tennis, summer camp,etc, etc could have all been saved. I guess if we had just PROMISED to do all those things and then NOT done them, the last part of her first paragraph could have been longer. I am going to keep this and wrap her wedding present in it. :-)

Ah ha!

2008-09-09T23:04:00.000-07:00

I managed to capture on film the moment that Ace realized her toes and feet were ATTACHED to her body.

This is our latest and still greatest party trick. As far as Lu is concerned, if having Down Syndrome means being able to do this, she is IN!

Her name is Norah, but you can call her Dobby

2008-09-09T22:37:00.000-07:00

I uploaded pictures the other day and I found this series of photos. I did not take them.

Someone in my house likes to clean the fridge,

and wash the eggs (????),

and take pictures of herself doing it (so she can get the credit, I suppose).

OR, just one more reason why our nanny Maria is worth her weight in gold. SHE forces the children to work (apparently) while I am away.

I have yours boxed up and ready to ship.

Why we love IKEA

2008-09-09T22:19:00.001-07:00

Ice Cream and free babysitting...

Yes please.

Nie Nie Day...

2008-08-27T20:04:00.000-07:00

Hi friends and family,

Many of you have heard the news about Stephanie and Christian Nielson who were injured in a plane crash a few weeks ago. Stephanie is the author of the famous Nie Nie blog (http://www.nieniedialogues.blogspot.com/). Over the years she has shared with us some amazing pictures, a sweet soul and some pretty awesome food! She makes mothering seem just a little bit more special and a lot more adventurous than it seems in my house. Their recovery will be long and expensive. Gabby at Design Mom (http://www.designmom.com/ ) encouraged anyone that has read or known Nie Nie to find something, anything, to auction off on their blog. All proceeds will go to the Nie Nie Recovery Fund. So, Thursday is Nie Nie day and I am doing my part. I only have one small thing to auction off, but if you go to http://www.designmom.com/ you will find a list of all the wonderful things that the blog world has to offer for sale. Everything from homemade crafts to concert tickets. The goal is to open your checkbook and help raise money for their recovery fund. They have four small children that are being cared for by relatives until Stephanie and Christian are well enough to come back home (it will be many, many months before this can happen).

The whole Internet has been alive with news about this wonderful family. The accident happened while we were in Utah and I have not been up to date on this blog about the developments. If you haven't heard of any of this yet (or if you just want to cry big, fat, sloppy tears of happiness and gratitude) visit the blog of her sister at http://www.cjanerun.blogspot.com/ . This is where you will find everything there is to know about the amazing Neilson family. I first met Stephanie when she was only 10 or 11 years old. My best friend married her brother and for the last decade I have had the privilege of watching the Clark family in action. They were remarkable people before, but they are even more remarkable now. I am so proud of all of them as I watch them come together and embrace the needs and changes that are happening. I wish I could do more.

My auction is for this print. It is titled "Waiting". If you have followed Nie Nie's blog (or checked CJane's) you will know that it was a tradition in the Neilson family to let off balloons on special occasions with wishes written on them. Last Saturday, friends and family across the world did this in honor of them. When I saw this print at Sara Jane Studios Etsy shop, I knew that I wanted to get it. Not only does this young girl look like she could BE Stephanie (retro dress and all) but she has the balloon and is looking into the future. It seems very fitting for this auction. I have been a HUGE fan of Sara Jane for a long time and own several of her prints. She is also having a sale at her Etsy shop, so check her out at http://www.etsy.com/shop.php?user_id=5317715 . The following is the description of the item:

--This illustration was drawn with pencil on paper, then digitally colored.

--Image measures 7x9" printed on 8 1/2x 11" paper, leaving a margin perfect for framing.

--Printed myself on gorgeous Hahnemuhle Museum Etching Paper: 350 gsm, Natural White, 100% rag, acid free, no brighteners; printed with archival pigment inks.

--These prints are lovely!All prints are shipped in a cellophane sleeve pieces of with a plastic panel for added support.

--I send my prints off to their happy new home within 1-3 days of payment.

--This print will come signed and dated in the lower right hand corner.

How this silent auction works:

--Please place your bid by leaving a comment with your Bid Amount in the comments section of this post.

--Following the close of the auction, the winner will pay for their item via the Stephanie and Christian PayPal account (access it via CJane's blog--I can't figure out how to put the button on here).

--The winner will then forward the PayPal receipt email to rebeccakbingham@yahoo.com with their mailing address. I will then have Sara Jane send the print directly to you.

--Please bid in increments of one dollar.

--The auction will end at Midnight (Your Time Zone) on Sunday, August 31.

Happy Bidding!!!

Also up for auction...

--My undying gratitude, manifested by my never asking you to babysit my kids.

--Household services (as long as you come to my house to get them and I can do them in between running the littles all over town..and that they don't take longer than 20 minutes. Oh and not ironing, I hate doing that).

--the best birth control money can buy (also known as 4 hours with my kids after a sleepless night--preferably during teething season). Just imagine it now, you can comb out Norah's hair while she screams "MINE" all the live long day (isn't age 2 a treat?), Jacob will tease the girls and hit things with sticks and Lu will be her typically cute, but bossy boots, 8 year old self. (I am not saying that I don't love my kids, I am just saying that after a day with them I can feel my ovaries shrink). Notice that I left Gracie out of this package deal. If I let you have her for any amount of time you would want to run out and have triplets with Down Syndrome. She is THAT yummy).

That print isn't looking so bad any more, eh? ;-)

Summer Vacation..

2008-08-15T08:05:00.001-07:00

Words cannot express how happy I am that school is about to start. There will be no more fighting (at least during school hours) with the big kids and I can have a schedule again. I finally get why moms dread the dog days of summer. For me, it is because my children turn into dementors. They pretty much have sucked the joy out of all things fun this summer (I like them still, but seriously???? ).

We are going to have another summary post because I am very lazy. AND, I never get on the computer anymore and I just want to get a #*$&@ laptop and be done with it already. I want my blogging life back.

--We have our new nanny Maria. She is AN. ANGEL. STRAIGHT. FROM. HEAVEN. I worried about the expense and drama of having someone in our home all the time while I was here (some of the time). She is awesome. It is like having a smarter, more patient version of myself here with the kids. When I am running around trying to be the kids fed so we can get out the door, she has the time to help Norah (and at some point, Grace) practice the things she needs to learn how to do on her own; walking, dressing herself, going down the stairs, using a fork, etc, etc. I have seen SUCH changes in Norah already. She is confident and sassy. She is not a baby anymore (and as Maria told me on about day four "you must stop doing everything for her and stop treating her like a baby"). I am so proud of Norah and how hard she is working. I watch Maria turn every single experience during the day into a learning lab. Me too. Sometimes Maria deals with the big kids and I do the littles. All day long there is an internal dialogue running through my mind and it goes something like this "who can I make this activity help Norah practice her gross motor/fine motor/social/cognitive/speech skills?" All day long. It is work, but it is also WORKING.

--Grace is so cute and happy. She has a special face that is reserved only for her father (or, in her world, the bringer of all things wonderful). It is a sight to behold. It is almost like her face will split in half because she is so happy. I am still dealing with my issues over her life and future but have gotten to the point where her Down Syndrome is so much a part of who she is that while I still wish I could change it, there is the fact that changing that would change who she is because it is part of who she is...and I like here just how she is now. Confusing? Yes.

--Jacob has finally, finally mastered the potty. He has also mastered riding a bike with no training wheels. I really didn't think those things would happen in the same month, but this kid always surprises me. He also just figured out the whole "I am sick, can I have a Popsicle/candy/stay up later" thing. Good boy. I am always amazed and thrilled to see how gentle and kind he is with the little girls, especiall Norah. The other day he came in to tell me that she had taken her diaper off. He was very quick to follow up with "Mom, it was an accident. Don't get mad at her, just take a sticker off her chart, don't get mad mom". For the record, I don't get mad when NORAH takes her diaper off, but I do get mad when JACOB decides to take his big boys off and use the backyard as a bathroom.

--Lu has an opinion on what she wears. There is an excellent chance that anything I like, she will hate and vice versa. We had quite a time finding a dress for her baptism (for all you non LDS readers out there...in our church kids are baptized at age 8 and some families get a special "sort of nicer than a normal church dress" dress for their kids. Our main difference is that she wanted to look like a street walker (in the sweetest 8 year old way) and I wanted her to look 5. We finally found something that both of us liked, and by that I mean it had sleeves and no rhinestones and was longer than her knees. For her that meant she chose the color and it was the one dress that fit my standards but I liked the least. We both win/lose. Good times ahead for this mama and daughter team. I need to fortify myself before I will even think of school shopping with her.

--Derek has been working hard. It is a blessing to have work that he loves and does so well, but I had forgotten how it used to be. He used to put in these kind of hours all the time. Now it is the odd week or two, but still. I am thankful for his hard work and how well he takes care of our family. It isn't easy to pay attention to all the kids, help me out and do the things needed around the house all on 3-4 hours of sleep. But he manages to do it and I am very, very thankful for that. I am also thankful for the thousands of times when it would be so easy to snap at the kids (because after all, he is tired too and has put in a full 8 hours of work by lunch time) but instead he almost always puts on a patient face and listens to them (because seriously... they want to say more in the last 5 minutes of the day than in the rest of the day put together). Just when I think I can't hear ONE MORE Sponge Bob quote, he saves the day and acts interested. He sees them so little each day that it isn't OK for him to be short with them. It isn't technically ok for me to be short with them either, but they get other interaction with me all day long. He gets that and is really, really good about it.

--Me..... I am busy, busy, busy. Shocking, right? Mostly I am just spending my time taking children to doctors, therapists, preschool and trying to fill the needs of all my kids. I am tired. I can do this, but it might take more Diet Coke than normal. I am thankful for the DVD player in the minivan that lets the kids watch their kids stuff while I listen to things like books on tape and NPR..things that make me feel like my mind is still KIND OF working. I am meeting lots of really cool people that I might not have crossed paths with if I wasn't doing all the stuff for the little girls. I am very thankful for that.

We are off to Utah for a visit with friends and family in just a few hours. We have a few birthdays, two anniversaries and some hard core catching up to do while we are gone. I am looking forward to having my mom pay attention to my kids, teaching Lu to water ski, sleeping in, eating at Dairy Keen, celebrating my 11th anniversary and eating at Training Table this week (I am seeing a food theme....).

Happy End of Summer to you all! See you in a few weeks.

Gratuitious Acie photo...

2008-07-28T13:49:00.000-07:00

These cheeks KILL me...

Guess who is rolling over? Guess who is totally on target developmentally on the typical kids timeline? I know that things will change soon, but we have a very strong little girl here. MUCH stronger than Norah ever was....

Two years later, part two...

2008-07-24T18:50:00.001-07:00

Her two year old photo shoot. I know, I know, the theme song of "Shaft" is running through my head too. She is a total Foxy Brown in the is outfit....

Look Grandma, this is WALKING!!! That is right internet, we have a walker!

So, when we left off last time we had just met our little girl for the first time. Awww, sweet. We are going to fast forward a months. Let me assure you that we spent LOTS of time with Norah's family before they went home to the Bahamas. We even heard Grandpa preach a very feisty sermon as a guest preacher at a church in SLC... Her mom, T didn't want us to have a picture of her (boo) but I am sure that in this internet age we will find one someday to show Norah....... I am so thankful for the time we had with them. It was important for me to feel some sort of connection with them so that someday I could tell Norah about her mom. They named her Hope and we called her Norah Hope. I wanted to name her after Derek's grandmother, whom I was very close to. Norah's names represent some very beautiful and brave women. She will understand that someday.

Norah has always, always, always been a very mellow baby. She was so easy to have around. She slept all the time, she ate like a charm (but always was really tiny--she wore her preemie clothes for almost five months). This started out as kind of a joke, but it wasn't too long before I started to sense that something was different with this girl. Different in the bad way. She seemed really floppy--but we kind of chalked that up to just having had Jacob, who is REALLY, REALLY, FREAKISHLY STRONG. She didn't roll over. She didn't raise her head. She didn't crawl. I remember asking my doctor about it when she was 9 months old. She didn't EVER support her weight on her legs. She didn't even try to crawl. Sitting up was still iffy. I kept asking my doctor about it and they kept telling me to wait until she as 18 months old. That seemed to be the magic age. They don't really worry about not walking or talking until then. As a more experienced mamma, now I know I should have pushed harder, insisted on more, but I just didn't know. Her 18 month mark hit right as I found out about Grace and all her potential issues..and those appointments didn't get made as quickly as they should have.

So here we are at two with a girl that has made SO MUCH PROGRESS, but is still very behind. Unlike Grace, Norah doesn't have a diagnosis beyond "failure to thrive". That means she is tiny and doesn't put on weight, she doesn't hit her developmental goals on time and needs help in at least 4 of the 6 developmental areas. These are 1) Language and Communication, 2) Concept Development and Pre-Academics, 3) Social and Emotional Development, 4) Gross Motor (e.g., sitting, walking, running), 5) Fine Motor (e.g., manipulating small objects, toys), and 6) Self-Help or Adaptive (e.g., feeding and dressing oneself). Check, check and check. So what do we do now?

We finally got the referral for an evaluation and lucked out to have a great social worker. She made sure we went to to the right doctors and did things in the right way. We are now knee deep in the early intervention program where Norah is getting (or will be shortly--those pesky waiting lists...) occupational therapy (there are a few sensory issues), physical therapy (gross motor skills and her hypotonia --that is medical for low muscle tone...), blind babies (not totally sure what that one is yet..some sort of eye therapy for after her surgery next week), speech therapy (self explanatory) and some behavior therapy (she doesn't cope too well..she is pretty much a kid that is either a 0 or 100. There isn't much in between. This leads us to think that she has a hard time transitioning). Good times, huh? I have a strong feeling that by the time she is in kindergarten or thereabouts, she will be all caught up and this will all be a fading memory. I think we will still have to help her find ways of coping with some things, but that is as much a function of her personality as anything else. A mellow, easy going kid just is. Motivation is a tricky one..

With all of that background it would be easy to think of our girl as just a bunch of issues, but it really isn't that way. I record it here for a few reasons, so we remember, so she will know and so others that find my blog and have kids with similar issues can either read about our story and progress or offer info and advice. When you get sucked into the "special needs" world, a whole new set of parenting info, lingo and learning curve takes over your life for a little while. It is always nice to have a network that know what they are doing...

The reality is that life with our little Norah is lots of fun. As I have said, she is my mellow girl, but she is also very good at getting what she wants. She shouted "MINE" at Cubby on her birthday when he tried to take her presents. I don't worry too much about her being bullied. I don't worry about how we will motivate her to want to do things that she doesn't want to do (so far, eating and walking....). She also is my sweet child. She loves to give kisses and has never passed a purse or pair of shoes that she didn't want to try and wear. She has the greatest hair in the world and is so patient while I condition it, brush it, braid it and tug at it. She loves wearing beads and clips now (she calls them her 'pretty girls'). She is is the best playmate because she will both roughhouse with Cubby and play "baby" with Lulu. She is my only child that loves "babies". She was thrust into big sister mode with the arrival of Grace, and maybe not coincidentally, she hit some major milestones not too long after that. She stood for the first time. She consistently used words (my baby--meaning Grace" being the first and most frequent). She is now starting to walk and be interested in potty training and sleeping in a big girl bed. The two year old tantrums are in full swing now too. Since I have done this a few times, I just laugh (and occasionally grit my teeth) and wait them out. She is picking up sign language really quickly. The whole family is learning so we will be ready when Gracie gets a big older. Her favorite signs so far are "cookie", "butter" and "chips". You'd think that with favorite words like that she would love to eat!

Hey! She is an Arrested Development fan so this apple didn't fall TOO far from the tree......

In Norah's world the facial expression above is a full on smile. This girl doesn't give it away.

Her favorite way to swim with Dad....

This isn't just another picture of a half naked baby who insists on wearing goggles... this is one with some actual meat on her bones... you can't see her ribs anymore. Progress!

This is a very rarely seen, rarely captured unguarded smile from my girl. She is usually giving us the sideways look that is half amused/half bored. Like this one below...

After her surgery on Friday, she should be able to see out of both eyes. I have to admit that I will miss her sideways looks, but I will enjoy her being able to use both eyes at the same time MORE (and I will NOT miss patching her... it is like patching a wildcat.... ).

Two years later, the story of Norah...

2008-07-20T21:35:00.000-07:00

This picture was taken today. She ALWAYS wears these goggles, silly girl.

As I sit here and type this I STILL cannot believe that my baby girl is two. TWO! (that is a really weird word if you look at it long enough.. it is one of those that you start to wonder if you spelled it correctly b/c it looks so weird..).

Norah and I when she was 4 days old. Photos by Lucky Red Hen.

Two years ago today I know exactly what I was doing. I had just come home from Africa two weeks before and we decided to start the paper work to adopt from Ethiopia. In the mean time, I called a few agencies and told them that we were home study ready and would be willing to take a newborn that was born BEFORE the end of August (when our dossier would go to Africa) and because of the recent trauma with Cubby's family and the "now we have him/now we don't" experience with JoJo, we weren't interested in having much contact BEFORE the birth but would love, love, love an open adoption AFTER the birth.

Check out that chicken skin on her arms. It still looks that way. These are also my favorite colors to put her in to this day. This was the smallest preemie dress I could find at Walmart the day we brought her home......

--Sidenote for new readers... Cubby's mom asked us to adopt her next baby, who was born 10 months after Jacob. She came to us TOTALLY unsolicited and we agreed. She ended up parenting the baby (a little boy that she named Jojo). She made this choice after we had had Jojo with us for about a week. This decision was fine with us (from the bottom of my heart I have no issues with women who end up parenting, that is wonderful as far as I am concerned...). But it still totally stinks. It hurts and it is hard. There was a lot of trauma involved in our relationship with her at that time. We were baby stepping our way into an open adoption and that is never easy. Other circumstances and choices made things very, very hard between us all this point and very little of it had to do with the fact that she parented..so no flames / Trolls please. Read the archives if you are curious, but I am not interested in your opinion on whether we did the right thing or not. I am over it..... Nevertheless, my heart was still a little tender....

Norah 4 days old, at Oh Judy's house for my impromptu baby shower in Utah with Blog friends...

Getting this kind of a situation is almost unheard of. After all, most expectant parents want to meet you, and if they want an open adoption, they want lots of contact before the birth. We knew that we were making a tall order, but decided to put it out there anyway. Shockingly, 4 days later we had it. The agency told us that a little girl from the Bahamas was due at the first part of September and that the family did not want to choose the parents. They wanted the agency to pick. They wanted a family that was religious, middle aged (ouch), and wanted to the baby to fall somewhere in the middle of the siblings. They preferred black parents, but if that wasn't possible, they wanted other black kids in the family. They wanted no contact at all. They didn't even want to know our names or see our picture or know anything about us. They wanted to have the baby and forget it ever happened. The ladies at the agency felt strongly that the family would change their mind later and want some sort of contact, so they wanted to match with a family that was OK with that. We were.

I love this picture because it shows the bracelet her mom gave her as well as how small she was. the bottle is bigger than her head...

After being matched with Norah's family for one week, her mom and grandparents decided that they wanted to look at profiles of other families after all. The agency called us to tell us that our match was "on hold" and that we should submit a file/letter/photos. I was a little bit sad about this, but I understood. I also strongly feel that it is the better in the end for the expectant mom to have a say in the decision, so I was happy to hear that they were being more realistic about the choice to place this child. I stayed up all night doing our file. That was two years ago tonight. The next morning I was awakened at 6:30 by a phone call from the agency and told to get on a plane because the baby was coming NOW.

We packed in a flurry and took the first plane to Utah (lucky us that Norah's family was in the US.. and my parents were available to help us out). By the time we had landed, tiny 5 pound Norah was already born. She was almost two months early. We took the kids to my parents and waited. According to the agency the family decided that since the baby was born before they could view other files, it must be God's way of telling them that WE were the family. They still seemed set on placing and we just waited. Norah's mom, T, is pretty young. She had her parents with her to help her make these huge decisions. T just wanted to have the baby, never hold her, never look at her and just go home and continue to be a teenager. Her parents (especially her mom, who is about our age) was very adamant about her bonding with her baby, and for this I am very thankful. She truly, truly had T's best interests at heart and it was very clear the she was letting T make the choice, but giving her all the info that she needed. T could have parented if she wanted to, but no illusions were made about how hard it would be. She also knew that "forgetting" it ever happened really wasn't an option. Even though it was the hardest thing she had ever done (we talked about it later), Grandma was willing to watch her daughter (force her, even) bond with her child knowing that it would be terribly painful to place her and go home. She felt it would be better in the end. That is a mother who loves her child.

We waited for two days and then got the call that the papers were going to be signed in a few hours. The agency wanted us to go to the hospital because they really wanted to encourage the family to meet us. If we were close by, it would make it easier to arrange. We checked into a hotel near the hospital and waited. T and her parents were very clear that they did not want to meet us before the papers were signed. Around dinner time, the social workers contacted us to tell us that we had another daughter (and at this point we still hadn't ever seen Norah). She filled us in how the paperwork meeting went and indicated that T's parents wanted to see our file. They might want to meet us. Would we bring our family scrapbook to the hospital and wait downstairs?

N pretty much lived in the sling for the first 6 months. She was so SMALL.

The social worker took our paperwork upstairs. We waited for a few more hours. Eventually they sent down word that they wanted to meet us and up we went. LONGEST ELEVATOR RIDE EVER. I'll never forget the sight of N's grandparents. She looks SO much like them. Grandma was rocking a leopard print muumuu. Yes she was. We visited with Grandma and Grandpa and swapped stories. We had a million questions about T and they were really good at answering them for us and telling us all about their family. I tried to memorize the facts, their accents, their faces. I can't remember how it happened, but at some point they went down to T's room and told her about us and asked if she wanted to meet us. She did.

Norah on her first birthday. She still has the cheeks, the afro and the yummy lips. She is the SPITTING image of her maternal grandmother in this picture.

I will also never forget the first sight of our daughter. T was in the hospital bed holding the SMALLEST human I had ever seen. Norah's tiny face peeked out of her white blanket. She had a full head of black hair and a sweet green bow tied in it. As we walked in, she made a little bit of a sour face, pursed her lips and let us out a yell (a look and sound I am now very, very familiar with) and I had a very strong impression come into my mind. The exact wording was "this girl is going to be sassy....".

She is.

These two are my very favorite pictures of her from around her first birthday. Especially the bottom one.

...to be continued.......

Internet..

2008-07-15T18:04:00.000-07:00

I am sorry.

I am a bad girlfriend.

Don't break up with me, ok?

I have a new post that is in its final stages (and by that I mean I have written it in my head and just need to get it on paper). Just to keep you coming back I will tell you the title of it.

"Kacy's blog is so funny I set my house on fire. "

Seriously. It is that funny. And I did. It is all her fault.

http://www.kasm.blogspot.com/

P.S. I can't make my hyperlinks work and I lost the bookmark that gave idiot proof instructions. Anyone?

Do you like...

2008-07-02T09:56:00.001-07:00

how I told you I was going to tell you funny stories and all about Vegas and then I just dropped off the earth? Sorry.It reminds me of the last little blogging break I took a few months ago (because I was too busy, whatever) and then crazy things started happening to me. It was like the universe was DARING me not to blog. I am not kidding. On the same week, in the same few streets I saw a bank robbery, Mark Kate Olsen (really, I swear it was one of the monkey twins) getting coffee and potty trained Jacob. There were a few other things that my sleep deprived brain can't remember, but I remarked to my husband that it took GREAT discipline (or yet unreached depths of laziness) not to blog it all. That is when he remarked that maybe I need a laptop and WiFi.

Today will be a catch up post with lots of bullet points, they are the new parentheses you know. The only problem is that I don't know how to do them yet, so I will do the lazy woman's bullets by using two dashes. Just so you know.

--I know I look/seem old, but the Internet is hurting my feelings. Somehow my e mail address was sold to a list for old people. It has been nothing but wheelchair rentals, step in bathtubs and stair lifters all the live long day in my inbox. I know that I don't LIKE the e mails saying that I have a secret admirer or that sexy singles in my area are looking for me, but now that they have been replaced by the geriatric set of spam, I am a little bit hurt.

--Speaking of internet. Lauren seems to think that it is an all knowing, living entity. She asked me yesterday if I knew how many minutes are in a year (what, you don't know that??). When I told her I didn't, she answered "I'll just ask Internet when I get home". Not THE internet, Internet. I might have to share my new best friend.

--Norah has started the infant development classes. She is fairly amused with the whole thing. They sign and she CAN do the signs, but doesn't want to mostly of the time. If she DOES participate, we all have to be really careful not to encourage her or act happy about it because she will then decide that she will NO LONGER participate. She is a 13 year old in a 2 year old body. Good times ahead.

--Norah gained 1 pound over the last 4 months, this huge. She is still way off the charts and the force feeding regime continues, but this is the first time she has gained more than ounces and even though she is small, she gained the correct percentage of weight over the last 4 months, so if we can do this for another 6 months, I might stop having to bring her in each month to get a weight check.

--In other news, Grace is growing at an alarming rate (she is a Bingham after all). She is huge. Huge cheeks, huge smile, huge personality and huge appetite. I am not used to my kids growing out of their clothes before they have a chance to wear them all. She is already on to the next size. Pretty soon, Grace will be handing down clothes to Norah.

--We are doing our Stay-cation this week. When I first heard that word I thought it was clever, but with in the space of a few weeks I heard it on Regis and Kelly as well as getting it in my mailbox via a Target coupon. So, I am pretty sure that it will be the "talk to the hand" of Summer 2008. We are going to a Giants game tonight (and we get to take the train!! That is the best part!! Garlic fries!!). Saturday we are going to the zoo. No garlic fries at the zoo.

--Pistachio is the flavor of 2008. I love them. I buy them by the bag full at Trader Joes (I can even get the pre shelled) and put them on everything; salads, ice cream, chicken. You name it, I will put a pistachio on it, eat it and LOVE it.

--My husband and I are obsessed with the Bachelorette this season. It is our favorite. Who do you think she is going to choose?

-- As I was talking to Lauren about what we can do to make the spirit in our home be better (there is some hard core squabbling that rules our lives) her answer was that I should punish Jacob more. Looks like we have some work to do.

--the mystery smell that has invaded our home is slowly going away. At first it smelled like dead animal (it must have been under the house b/c we tore the house apart). Now it just smells like half mold/half burning. Weird. I hope it goes away soon. I hope to ignore the problem to make it go away. That usually works.

--California is burning down. Really. There are something like 1000 forest fires. The air is smoggy and heavy with ash for the last few weeks. We even had a few days last week where they told everyone to shelter in place, not just the old people (ehm, which is apparently me now). Please pray for the people fighting the fires and the folks who are displaced. That is scary.

--Kid Movies. In the last two weeks we have taken the kids to see Kung Fu Panda, Wall-E and Kit Kittridge (we were sheltering in place and no one has AC here). They weren't too bad. I would recommend all of them. If you are afraid of Hobo's or the word Hobo, do NOT go to Kit Kittridge. Don't say I didn't warn you.

--The hands free law just passed yesterday. I guess I am going to have to buy a headset. Bah humbug. First they outlaw grocery sacks, now the phones. I never remember to grab that stuff by time I have gotten all 35 of my kids in the car...... so if you never hear from me again via phone, you can just blame California. I know it saves lives (and really is a good law, especially the part that says teenagers cannot use a cell phone or texting device AT ALL in a car...).

HAPPY 4Th. We will celebrate by NOT doing fireworks (California is on fire remember) and by swimming and eating blue chips with salsa and NOT talking on the phone while driving and eating garlic fries while we cheer for our Giants to beat the Cubs (won't happen).....

BE SAFE!!!!

Scribbles..

2008-06-17T13:35:00.000-07:00

Hi,

I am over at Segullah today. (shoot, I can't find my hyperlink page..here is the link
http://segullah.org/blog/

I was asked to write about how it felt to learn about Grace's Down syndrome. I was also asked not to submit the sanitized version. The goal, I think, is to get a real person writing about a real experience. With it you get MY experience I don't (nor should you) assume that another person's experience is the same. This is my story and my journey. I realize that by choosing to share it with the world, I am opening myself for criticism. That is OK, but it doesn't mean that you can't hurt my feelings. Just as you shouldn't assume that you know ME via the things that I write here or on any other blog, I won't assume that I know YOU via the comments you write. I might think you are a big fat meanie and spam your blog if you write something that makes me cry, but I WILL try and remember that there might be more to you than that. Let's just play nice. OK?

If you are coming to this blog FROM Segullah, welcome. I am Rebecca. I wear many hats in my life. Mostly I am a regular ordinary mom that could stand to loose a few pounds and never keeps up with her laundry. I am the mother of four small children. Two of my kids have special needs. Two of my kids are adopted. Two of my kids are black. Two of my kids are biological. It is kind of a grab bag in our family. I have learned along the road that I am capable of more than I thought, to be thankful for the tender mercies that Heavenly Father extends to mothers and to just laugh a lot. It takes as much work as crying, but people like you better if you are a laughter rather than a crier. There you have it.

P.S. Las Vegas update (titled "Las Vegas is NOT an appropriate place for children" by Lulu B, age 8) coming tomorrow as well as the explanation of the famous "sad bath". Stay tuned (and remember, don't write anything unless it is nice, but do feel free to spam the blogs of others that say mean things about me...).

Vegas Baby....

2008-06-10T19:17:00.000-07:00

Why wear just one tutu, when two is better?

Lu and I are crashing in Daddy-o's hotel room for the next few days in Las Vegas. This is a trip that we have been promising Lu for a long time. When she was little she was obsessed with the music from "Mamma Mia". She knew all the words. We promised her that when she was eight, she could go and see it. So now we are giving her the promised trip. I have a feeling that the play might be less appropriate for an 8 year old than I remember.

It will be fun to sit by the pool for a few days and just relax. None of the other kids are going with us. Wish Grandma Jane and Best Babysitter Erin good luck with that one. Cubby has been especially awesome (and by awesome I mean evil). Norah has taken to nudity like her older brother and keeping clothing on either of them is a loosing battle. I always swore that when I had kids I wouldn't let them run around with just a diaper on. Now I have TWO that run around with just a diaper on. Apparently you can take the girl out of the condo........

Have a GREAT weekend. Wish us luck in our taxing next few days of swimming, sleeping, watching Arrested Development and not negotiating any kind of squabbling. I also just made plans with the famous Azucar from The Jet Set to have lunch at Mesa Grill. We are both foodies and she is the perfect person to go on an eating tour of Vegas with (or an eating tour of anywhere with, or just to go anywhere with...). More details to follow.....

Heaven.

Well, what do you know?

2008-06-06T13:44:00.000-07:00

I sent around a few pictures of the baby to my family the other day. My mom wrote back and said something to the effect of "is it me, or does she look like Lu?". I see a lot of Lulu in our little Ace, but wasn't too sure. Then I took this picture.

Maybe it is only when I shoot them straight up the nose, but I'd say these girls were sisters, wouldn't you? Granted, in our family we aren't used to sisters looking too much alike. Before Acie joined our family in person, I was very, very focused on the things that should would have that would make her different. While people with Down Syndrome could all pass as cousins, the family genetics come out loud and clear too. She looks like us, because she came from us. Not even her upturned eyes, lower ears and sweet little nose can mask that. What a happy surprise.

This is the picture that I am thinking of using for her birth announcement. I took some photos of the kids for my husband's fathers day present (don't worry, he doesn't read this blog...so we are safe). It has been a long, long, LOOOONNNNGGG time since I have felt like taking pictures of my kids. One more tiny step in me feeling more like myself these days.....

I spent a lot of time today trying to get a picture of Norah. I kind of lucked into this one.

Nono spent most of the morning looking like this....

She has some teeth coming in and has been a serious cranky pants

This one, on the other hand, is doing a really good job at practicing being defiant. Today he had the following punishments... he had to wear clothes, he was NOT allowed to vacuum, he was not allowed to have veggies at lunch...(these punishments defy logic, I know..but they work)

.....and about 12 seconds after this picture was taken, he had to have the dreaded "sad bath". This is Cubby's version of "the last resort". It is one of the only things that really works with him(this is a child that actually laughs at most consequences....). If you promise not to call CPS on me, I'll tell you what it is....

But he sure is a cute little stinker. Yogurt face and all.

And now I will leave you with the cuteness that is Ace. She has been chewing on her tongue a lot lately, it is pretty cute. Also, look how translucent her skin it!!

Lulu is out of school next week. She has been pretty good lately. There is still the requisite eye rolling going on, but mostly she has settled down a bit. She started piano last month and really, really LOVES it. Her most effective consequence is NOT being allowed to practice. She is really good too, her teacher tells me that she picks up the theory really quickly and is moving pretty fast. She is going to be in the recital this weekend. How crazy is that? She really loves to play and seems to have a talent for it, so I hope this can be something that she can work at for the next few years..... I can't believe she is going to be 8.

It got me...

2008-06-05T08:07:00.000-07:00

I am now the latest lucky host to the evil tummy bug. This is not fun, but could be a good way to kick off my post baby weight loss program. Nothing like a good stomach flu get past a plateau.

** Ironic Update. Our gardener just came to the door to tell me that the vine that D and I thought was so pretty that covered one of our retaining walls has creeped over from the neighbor's yard and is already covering (and killing) the tree in the corner and has covered the roof on the garage. It damages roofs faster than anything. Huh. We had no idea and would have just let it keep growing and growing. He is going to cut it down next week and save us the cost of a new roof.

People like us should not be allowed to have yards. We aren't smart enough.

Ok, back to the laundry.

Look who is so smart??

2008-06-05T06:21:00.000-07:00

This is where Ace lives. I bring her down in the morning and leave her basket on this counter. Poor baby. It is like she is just another bag of groceries. We almost don't notice her...

But at least when she is right here, I know she isn't being loved or jumped on by any of the older kids. They would actually love her to death if I let them (and it would be death by way of crushed lungs from hugging, pneumonia from all their snotty noses on her face, etc, etc).

And, she sleeps so well up there that it really seems to be working for everyone. Sorry for this shot of her giving her best Micky Rooney face. I have to get my camera out and capture more of her "cutest baby on earth" faces.

OK, so I didn't fool you with that last post. You guys knew it was me. See, I have NO idea how I come across. I am sure the discussion will continue over there. For the record, while I am always VERY embarrassed and unsure when meeting people IRL (especially bloggers) I have always been impressed with those that I have met. I don't want anyone to worry that I am talking about them..... usually I am thinking of myself when I compare the blogger person to the real person.

For example. In my last entry I was writing about the strange experience that I had w/ the doctor. I was just putting it out there, but I got back very sweet messages about how I am a good mom and how my kids are lucky to have me. That stuff is hard for me to hear. Not because I don't think that I am a good mom (I think I do a pretty good job) but because I know the rest of it. You guys don't know that I have to FORCE myself to listen to my 8 year old talk about the Simpsons and Hanna Montanna, when I really want to scratch my eyeballs out. Sometimes I don't listen, I just tell her I can't talk right now, and I do this even though I know that she doesn't get much time with me and before too long she won't WANT to talk to me.

You guys don't know that when Grace was born, I couldn't look at her for more than 15 minutes. I wouldn't even open my eyes, because that is when it would be real and I was afraid that I wouldn't have any feeling for the baby that I had been carrying and didn't really feel that connected to. And when I DID look at her, I wished that my eyes were still closed.

You don't know how every time I have to take Ace for an appointment I get really moody and weepy the day before. I am not totally over the whole "I just want her to be normal" thing and it still hurts me to think about this little girl being different. On the one hand, she is so sweet I wouldn't change her, but really, if someone could wave a magic wand, I would. My husband wouldn't, but I would in a second. I want her to be normal. I don't want her to be "special".

I am not in denial about it and I know that Ace is perfect just how she is, but that doesn't mean I don't remember curling up on my bed on Halloween day last year after getting off the phone with the geneticist. I just remember shouting "NO" over and over and over and curling up in a ball and sobbing. Crying. Dramatic, no? I even scared my other kids. Grandma and Grandpa had to come over and take them trick or treating. Great mom, huh? I traumatized them and then bagged on the single most looked forward to event in our house. If I was a GREAT mom, I would have just sucked it up and gone.

You don't know that many, many times I just don't WANT to help the kids do the things that they need to...practice walking, read book after book and practice our "goals" for the week. To discipline Cubby and be consistent--frankly, I don't really CARE if he eats Popsicles all day. I really don't. I would like to think that we all have a little bit of this in us, but maybe I am wrong. At the very least, I don't spend my time dwelling on that stuff.

So, I guess because I know the whole story, I have a hard time hearing about how others view me as a mother. Don't get me wrong, I love the compliments and appreciate hearing them. We all do. Every mother should be told a million times a week how good they are doing. It is good for me to get some of this story out. For a long time there was stuff that I just couldn't revisit because it was still too new and too painful. There are lots of things about the last few years that I still have a hard time thinking about, let alone writing about. I feel it is important to put some of this stuff "out there" because I have learned so much from others who kept blogs about their children with Down Syndrome, their journey to adoption and how they function as a TR family, their relationships and trials with their kids families in open adoptions, etc. I am so thankful that those stories were there for me to read. So I will add mine to the mix.

There was also something that Dalene wrote in the comments about how she wishes she could write some things but can't because it wouldn't be fair to the parties involved so sometimes she just has to processes it alone, and it is lonely. Yeah, I feel that way too (oh the STORIES we all could tell, eh?). Like Citymamma, I also have a blog that doesn't get published (and HELLO? Ethiopia adoption is my specialty...call me, B-Happy is another good resource..). My kids each have a site that their families have access to.

So you see, I am just a mom. I am doing the best I can and even with my help that I have, it isn't enough. It never feels like it is enough for any of them. At least they are getting more than they would if it was JUST me. Who knows?

For now, I am going to go feed the squawking bird that is my baby (she really is SO cute...so patient and happy). She is starting to smile now, but not at me or her dad. She smiles at my sisters, the bishop's wife, the nurse who just gave her shots, the checker at Target. Not us. We get nothing. This girl doesn't know how to work the system yet, does she? I don't feel like I have enough time to just HOLD her and enjoy her. I know that I need to cherish the times like now when I can hold her on my chest and smell her sweet baby breath and rub her little bald head (it's been a long time since I had a baby with a bald head). I need to ENJOY her more. And the other ones. My goal today (since we got the babysitter sick and are home for another day--all appointments cancelled) is to try and enjoy my kids. Respond with love and not impatience or frustration. Be present. These are things that I really need to work on.

Talk to you soon

Tell me what you think.......

2008-06-04T16:10:00.001-07:00

I finally had the chance to catch up one some old blogs and also found some new ones.

I wanted to have you guys take a look at this other blog and tell me what you think? It is the kind of blog we love to hate. It is a woman that is a stay at home mom with a full time nanny. THAT kind of mom. She has a new car, a big beautiful home in a fancy area and they travel first class. I am talking limo's and private jets (since a few of you were asking after my pictures...I thought this would be interesting). You know the type, they have cleaners and gardeners. I think you will find it enlightening and would be interested in your input. We can talk about it tomorrow.

Really, check out the link HERE .

I will leave you of a few pictures of Family Home Evening the other night until then. I think this will be a very interesting discussion. You won't want to miss it (and I want your opinions....)....

Oh, for those readers not familiar with Family Home Evening, it is a program in our church where we take one night of the week (usually Monday) and spend it together as a family. We like to make this night different than other nights, so we tend to structure it differently than other evenings (since we are all home together all the time anyway...we haven't hit the phase where the kids are gone all the time yet). We have a little lesson (about 2 minutes... usually "Be Kind" or "Don't hit your sister"). Then we have an activity (this time we made crowns) and a treat (the kids take turns choosing, shopping for and helping make the treat). Pretty easy stuff, but fun. We also open and close with a song and a prayer. There you have Family Home Evening 101

It is what it is....isn't it?

2008-06-02T22:25:00.001-07:00

Those are words that I have learned to live by.

Yesterday I learned it again. I think.

I took the little girls in for their doctor evaluations at the infant development center. This is step two on a ladder of about 50 steps. Our hope is that at the top of this ladder, they will both have been given the additional help they need to lead productive and independent lives. Both girls have special needs and we needed the doctor to give them a "diagnosis" so they can be referred to treatment. Her Royal Majesty is still a bit of a mystery for all of us. We know that there ARE delays, but we don't know what is causing them. We are just going down the list and trying to rule out things. This doctor asked about a thousand questions and then wrote lots of notes. He ended up referring her to a program for physical delays. This one is what I am the most excited about. We are finally going to get to the bottom of her hip displacement issues and aggressively address her low muscle tone/loose joint issues. There are other things that he noticed. Things like the fact that she doesn't hold her sippy cup on her own very often and when she does, it is with an open hand on each side instead of grasping it. She also doesn't hold onto things and try and walk. She fists her hands instead and uses them to help balance. This led the doctor to think that there is some neurological stuff going on that we haven't ruled out yet. She has very low muscle tone but has great fine motor skills (that is usually not the case). His feeling is that she doesn't know HOW to coordinate her muscles and that somehow the signals aren't going from the brain the to body the way that they should be. Also, with her weight issues, he asked some very good questions and told me that at this point he thinks her lack of weight gain is metabolic, not "bad mommy". She feeds just fine, it just doesn't stick. This has also been my feeling for the last few months. All in all, good questions and good things for me to use when I start my new dialogue with my NEW pediatrician. I liked my last one OK, but I felt that each time I went in I as getting lectured. My concerns about Norah were met with some sort of lecture about how I wasn't being a good enough mommy (you aren't feeding her right, you aren't giving her enough attention.....). I felt that the things that I felt were bigger issues were kind of brushed aside. Things that we are now finding out actually ARE issues. I just didn't know enough to push back.

Socially, Norah is just fine. She bossed around the baby, the social worker and finally the doctor during the whole visit and did her best impression of a two year old by refusing to stand on her own, carry her own weight when assisted with standing OR point to her nose when asked (and we have been practicing that one). I know she can do all these things, but today she just couldn't be bothered. I could have told him that she was on target socially. Her cognitive receptive skills are in question, but since she picked up the words "crazy", "poop" and "shut up" from her siblings this week, I am pretty sure SOMETHING is getting through to her. All of us think that at some point she will catch up and be just like a typical girl.

Ace is much more cut and dried. While there is a large range of abilities within the diagnosis of Down Syndrome, all our kids need pretty much the same thing. They all have low muscle tone--so that means physical therapy. They need help learning and practicing how to do everyday things like feeding and dressing themselves, that means occupational therapy. Our kids are 50% more likely to have hearing loss--usually because of their smaller ear tubes that cause more infections. That means audiology or an ENT. Our kids also often have difficulty learning to speak clearly, that means speech therapy. Our kids are 15 to 20 times more likely to develop leukemia, so there is that check up (so far, that has been our pediatrician). 50% of our kids are born with serious heart defects that need surgery (Ace does NOT have this, thank goodness), that means cardiology. You get the picture and that isn't even the end of the list. There is just doctor after doctor after doctor that needs to be in the loop and as the parent, it is our job to the be the team leader and make sure that we are all working together and keeping each other informed. That feels very overwhelming to me. I am still learning what I am supposed to watch for and fight for.

So, the doctor stuff for Ace was pretty much talking about the programs and what to expect, touring the facilities and trying to decide if I want home care or to take her to the center. I also had to sign lots and lots of papers (ALMOST as many as buying our house). Luckily we have a really great social worker who guides us through this process. At one point in the meeting she and the doctor asked me if we were going to get a medical card for Ace. When you get a medical card for your child, it means that the state pays for her therapies. I actually debated this one. We currently have private insurance and it would cover lots of this stuff. I wasn't sure I wanted to have the state pay for something that we could pay for ourselves at this point. I decided to do it because the social worker pointed out that Ace deserves to have this so that for the rest of her life, she has access to free medical care and free therapies. We will not always be here for her. Also, programs get funding based on how many kids are enrolled, so the more they have enrolled in the state funded programs, the more therapists they can hire, the more they can offer. Fair points all around. The biggest one though? We already paid for this, with our taxes. When you make more money, you pay more taxes, MUCH more--so why pay twice? Why not take that money and donate it to the local center, or hire a better therapist for extra work, etc? Anyway, that was my consideration. Things that you never realize you will be thinking about for your 8 week old baby. That feels overwhelming to me.

I try very hard NOT to think about the battle ahead when it is time for school and we want her to be mainstreamed. What if we have a school district that doesn't want to do that? Do I have it in me to fight that? I try NOT to read the new information about how people with DS are much more likely to have Alzheimer's and now that they are living longer...well, I really, really worry about who will take care of her when we are gone. I really, really try not to think about the time when she is aware enough to know she is different but still wanting to be like all the other kids (typical teenage stuff). I already pray that there will be a nice group of kids in our church and school that will include her and see her for the little spirit that she is and not be like I was as a teenager. All of these things are overwhelming for me.

Here is the strangest part of the whole day. As I was signing the papers to apply for the medical card, both the social worker and the doctor started to look a little bit uncomfortable. They explained that for her to qualify, they needed to give her with a Stage 2 diagnosis. That means that they had to declare that she is mentally retarded. They wanted to know if I was OK with that. They acted like they expected me to burst into tears. I was a bit confused because she is retarded. Isn't she? Isn't that part of what Down Syndrome is? They explained that she isn't retarded yet. To be retarded means you score lower than normal on an IQ test or that you are slower (which is the real definition of retarded--to slow) than typical people at the same tasks. Right now she does everything the same as other babies, so she isn't retarded yet. She is just a baby with an extra chromosome. At some point, she WILL be retarded. It ranges from mild to moderate, but it is going to happen. Saying it doesn't change it. It is what it is. Apparently some parents get really upset at this point. They don't ever want their child classified as this and never accept the help from the state. I understand that everyone deals with this differently, but for me it doesn't change what it is.

I know that Ace, like ALL people with Down Syndrome is going to be capable of learning. Some things will be easier for her than others. I know the laundry list of possibilities. She could be very high functioning or she could be low functioning. I don't know what her package is quite yet. It is what it is. Calling it one name or another doesn't really change anything, does it? Maybe I am just not there in my journey as a parent of a child with special needs. Maybe in a few years I will look back on this and be shocked at how little I know (heaven knows that I do that about adoption, almost daily). At this point, it just doesn't matter to me what you call her, that doesn't overwhelm me, it is DOING it that leaves me unnerved. I guess I just left that meeting with the feeling that out of ALL of the things that are currently running around in my brain and making me feel overwhelmed, calling my child retarded just isn't one of them.

It reminds me of a conversation that I had with Lauren the other night. She is finally getting what it means to have Down Syndrome (for awhile she thought that anyone with flat features and slanted eyes had Down Syndrome--including her Korean friend Nicole and the president of our church, Thomas Monson.....). She was crying and telling me that she is afraid that kids will call her sister "retarded". I told her that it sounds like that is not a nice thing to hear, but that in fact her sister IS retarded but that just meant that she learned things a little bit slower. She would be better (and therefore NOT retarded) at other things, like making friends and being kind to others. It wasn't something to get too upset about because it was true. We just needed to help other kids understand the correct meaning of that word.

I might be the only one here that doesn't have a problem with the label. Just the repercussions....

Two posts in two days. Look at me go!! You can thank the tummy bug that Jacob continues to fight for this one. I haven't left the house yet.

Also, several of you noticed the plane. Man, you guys are observant. Yes it is a private plane. More on that tomorrow.....

So you think you can....

2008-06-02T07:19:00.000-07:00

blog?

dance?

use the computer w/ out a tyrant of a 3 year old hanging off your arms?

Hahahahahahah.

You can't.

So, I have been putting off blogging because I have all these great, thought provoking posts in my head that I wanted to get onto paper, but it just doesn't seem to happen. So, no blogs. The good news is that my brain is still, apparently, working because the posts are still in my head. I have also decided to get a laptop so that I can write/blog/keep in touch on the go. I am never at my house these days, and when I am, Cubby is such a stinker that it isn't worth getting on the computer (that top picture was from when I offered him a snack of hummus, and he baptised the computer in it. So, hummus is out....) I also fall into bed at 7:15 each night (that is 15 minutes after all children are deposited in their rooms--what they do after that, I don't care, as long as they are quiet!). I am just FULL of excuses aren't I?

So, I have vowed that I will post something every day this week to get back into the habit of it. I even got up extra early to do this. I miss this part of my life and my blog friends. Several of you have had babies since I last wrote (welcome to the world Miss Ainsley Jane and Miss Meera Grace and Mr. Chief...), some have gotten married (remember my "manny" last year? He married his sweetie-pie last weekend...) and others have just continued to write witty posts that inspire me. More than three people have also told me in the last week that they depend on my blog posts to keep up with me and I am letting them down. There is also a small fear that my mom might come and steal my kids in the night (well, the baby and Lu and possibly Her Majesty Norah--but not Cubby...) so she can actually see them again.... so here it goes.... here is my post and here are some pictures of the last few weeks.

We have been knee deep in laundry here because the dreaded tummy bug finally got to us. Cubby got it first. He had the nerve to get sick the night we had some of our friends over for dinner and grilled fillet mignon. Doesn't he know how much that stuff costs? The injustice of cleaning steak off your carpets at three in the morning is more than I can bear. I might have been just a BIT more tolerant if he was puking the normal dinner of mac and cheese and hot dogs. Seriously. I have never been more grateful for washing machines in my life. I imagine that the pioneer women didn't enjoy the nights their kids puked up whatever it is the pioneer kids eat any more than we do, but it took them lots longer to get the laundry done (and I can see it now--if pioneers had blogs "today Hyrum vomited after we had a special dinner of buffalo. Doesn't he know how long it took me to hunt/kill/skin/cook that thing? The nerve...). Oh wait, they did have blogs. Except they called them journals.

See. My brain really is gone.

Anyway--here are the woodland creatures over the last weeks. We visited Utah and saw all the family (almost all, HI Kate and Matt!).

We have been taking turns visiting Dad at his office. This is his view. No wonder he always sounds calm at work. You can't see it but Jacob's head is blocking Alcatraz and to the left is the Golden Gate Bridge. Wicked view.

We let the kids use my camera phone during our flight out. They caught some really good shots.

This is one of my favorite pictures of the mid's. They seem like they are the same age now, instead of a toddler and a baby. They play really well together and really enjoy being together. It is really sweet to see (and ABOUT time)....

Hello Lu and the lovely grandparents! They are known as Pappa and Sweetie around these parts. They still think my kids are charming and fun, which is really lucky for us.

Lauren and her beloved cousin, Abigail. This relationship is the best example of hero worship I can think of. Lauren really wishes we lived closer and so do I because Ab's is a great girl.

This must be why I can never find those cute diaper covers for Norah. Lauren did this look for her and then proudly declared "for Halloween Norah should be either Minnie Mouse or Oprah!". I am not sure which part reminded her of Oprah. The hot pink head cover? Maybe?

Yeah, I totally see Oprah.

See you all tomorrow!