Just don't rock the boat....

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?

Ah ha!

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

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

Ice Cream and free babysitting...






Yes please.

Summer Vacation..

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.

Two years later, part two...

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!

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...

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.

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......

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

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...

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

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.

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