Well, what do you know?

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

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....

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!

Back to business...

Picture of the extended family = Good (sort of, Lu is sticking her tongue out, Norah is giving the biggest stink eye of all time and Jacob was being forcibly restrained by my father in law--but knowing our family it is the best we were going to get).

Trying to get a family photo of my stinky little stinkers that wouldn't look at the camera = Not Good (check out Norah..she was mad!! As my sister Nie says "there is a large angry black woman in there...")

We had Gracie's blessing at home right after she was born. For those that don't know, in our faith we give our babies a special blessing when they are small to formally enter their names in the records of the church. Baptism occurs at age 8. So the blessing is like a less elaborate christening. I have heard them called dedications in other faiths. Anyway, it usually involves doing it in front of the congregation, having a special white dress and a potluck/party afterwards. My mom was in town when Ace was tiny so we just decided to do it then. The great part about doing it at home was that A) no one had to get dressed up and B) I didn't have to host a big party.

If I have any more kids, I am doing it this way again. We also ended the day the way that all good gatherings should end; with a game of Guitar Hero. Norah is our favorite family member to duel because she totally STINKS at this game....extra credit if you can guess where her hair ends and the TV stand begins...

I am also going to try and blog more. A lot more. It occurred to me that I have things to say and I miss having a place to put my thoughts down. When I blog so infrequently, I feel like I have to do the obligatory "update" post and I have more to say than that. I don't know if anyone wants to hear any more than that, but that isn't the point of this blog. I was re reading all our posts (both the published and the unpublished ones) from our experiences with our adoptions. It is so amazing to see how dumb/naive we were at first and how much we have grown and learned since then. I have just come out of a year of rebuilding and some pretty major events in my family (both good and bad ones). I have been writing this year too. Much of it will never see the light of day in blog-land, and that is OK too. I think the point of writing is so that we can see progress. Sometimes it is in the wrong direction, but it is still movement. Right?

So, check back for more posts. And, I have a few questions and topics that I would like to discuss and would love feedback on, or just a general discussion.

Here is your teaser--which member of my family was picked to be on a reality TV show (almost)? What would YOU tell the Gap in a focus group? Do you know a blogger (or multiple bloggers) that seem to be be very sweet and nice and sunshiny and are quite popular in blogland and have almost made a brand of themselves, but you know them in real life and they are kind of mean or not at all what they seem? Does it bug you? Should it? After all, we choose the parts we want to show on a blog (as opposed to, reality TV where you are at the mercy of the editors....)..... Does it make you want to write anonymous comments to them before you remember that you aren't actually 12? Me neither.

Gratuitous Ace Photo

iPhone

So, my computer is getting "healed" right now and I will be able to upload pictures by the end of the day. Finally. I have to say that having a small camera on my phone has been pretty fun. Here is a sampling of the pictures we have taken lately. These tend to be "A Day In The Life" pictures.

I have a more informative post coming soon, but suffice it to say that we are all doing really well. I am feeling great and already cannot believe that I ever was pregnant. The baby perfect. She is sweet and peaceful and a great sleeper. We are still working on her eating, but I think she is doing just fine. We start therapies for her next week (that should be interesting). The kids are adjusting really well. Jacob is very sweet with her and is the only one that is at all interested in holding her anymore, Norah thinks she is a doll and chants "my baby" over and over when she sees her. Lauren still loves to play with her, but anything over 10 seconds is too long for her. Derek is smitten. He can often be heard saying "she is so cute I can't even stand it". This girl already has him worked. It took the other kids at least a year to get to this point.

These are for you, Heather and Beth.


This picture captures my life pretty well, TV, bread and butter, baby, cooking magazines (I just read, not actually cook these days) and my bed. Welcome to my world.

Jacob--still naked most of the time, still loves his bubble baths and still my silly, funny boy.

Apparently Norah found the phone

Jacob asked Derek for a pen in church. Then he struck this pose and said "what do you need from the grocery store dad? Ice Cream? Diet Coke?". I might be going to hell because I took a picture during sacrament meeting, but at least we weren't in the chapel.

Gracie's Indian name would be "Ace Longtorso"

The "bookends", Lulu and Gracie.....(Cubby and Norah are the "mids", as in mid(dle) kids)

We play music after dinner and the kids dance while I clean up. It gets the wiggles out and helps us leave the evening on a happy note, since they are wild animals at night anyway. Currently we are loving anything Abba, Mika's "Lollipop" and the soundtrack from Enchanted.

Come on, is she the cutest or what? Go Cardinal

But it is amazing how quickly she transforms from adorable to Micky Rooney

Apparently, Cubby also found my phone

Easter -- Part Two

After everyone dug into their baskets, Norah went behind them and took what she liked from the shrapnel on the floor.

Lu got nail polish. Their MUST be a real Easter Bunny because mom doesn't allow that stuff

Norah decided she wanted Jacob's balls.

Derek was showing Jacob where some candy was and look who decided to try and WALK over to help out. She only managed one step before she fell down, but I am still getting used to her standing.

Hunting for eggs outsides wasn't as fun as I thought it would be. My kids aren't really into candy and the idea of finding eggs with candy in them wasn't enough to motivate them at all. Finally, we turned it into a sibling war and be Cubby that he would find more than Lauren. They were OFF.

In the end, they only found about half of them and Derek and I had to go after them and clean up the rest (in fact, we found more candy this morning...). Next year, we are just going to cut to the chase and hide money.

It was such a beautiful day outside that day we just hung out. The big kids got into the hose and got soaking wet, Norah just tried to keep up. It was so nice to sit on our chairs in the backyard. I was holding the little one (who was only 4 days old and now seems SO MUCH BIGGER) and Derek studied. A house, a yard, the baby, healthy kids..there was much to be thankful for this Easter.