Archive for July, 2006

Bonus Pictures, and a weekly update

July 25, 2006

When, oh when will it rain? 🙂

Just a few words before Scott, Ben and I are off to Escanaba (which I affectionately call Escabanana) for Sue’s wedding. We leave wednesday night and not a thing is you know what Ben and I are doing today. 🙂

Mr. Ben is growing like a weed, something I haven’t reported lately. His weight gain has slowed slightly, but he is looooooong! As of yesterday Ben weighs twelve pounds, six ounces. As of last week he is twenty six and a half inches long! He’s going to be tall and skinny like his daddy. As a consequence, there are several three month outfits that no longer fit his body, but are still to wide around the middle. It’s really quite funny. I think when we return from vacation we will start him on cereal, as a prelude to solid foods. It’s been a little funny around here lately, trying to adjust his feeding schedule so he eats when he’s hungry. I know that sounds crazy, but in the hospital the nurses fed him every three hours, no matter what. Then we sort of settled into an every four hour schedule the past few months. We’re working on stretching that out into every five hours or so, because he is not eating as much at his feedings…and I think he’s not hungry. Well, that and he is “busy and nosey” (the nurse’s very accurate description)…he wants to look around at everything, mostly his hands and feet, and play with his bib instead of eating. I have started offering him water from my cup at dinner, which is a funny experience. He loves it, but he’s trying to figure out how to keep it in his mouth. Thank goodness it’s only water, because it usually winds up all over his front. I know, this is just the beginning of the mess. 🙂

I got some more pictures from the fourth of July from our friends, and some are just too funny not to share:

party animal


July 20, 2006

I have to share the cathartic way I spent today’s nap time. It’s about Ben, but not really, hence the friends-only entry.

One of the things that scares me about staying home is money. I’m petrified about money. Why? We have very little debt (house, cars, things that most people have….without the debt that most people have in credit cards and etc.). We live simply. We don’t go out to eat much, and what we do now will be scaled back. We don’t mind that, because food is so expensive out, and it’s so cheap to eat at home. Scott brown bags it. We travel cheap. And we are happier than pigs in slop right now.

I have never thought of myself as a materialistic person. I have recently (last two or three years) realized that I make myself miserable comparing myself to others, and in a certain way, i do try to keep up with those around me. It is a fault, but there it is. I know, consciously, that this is absolute madness. First: people who tend to “look the part” do so at some expense: debt, low self esteem, etc. But there you go, I try to look the part. About three years ago, right before my wedding, I lost a ton of weight. Close to fifty pounds. I looked and felt great. I have since gained it back, most of it through my two pregnancies (one ectopic/miscarriage which led to depression, the other one ben, leading to enormous highs and lows). I know what it takes to loose the weight again, in a healty way, and I am not doing it. I have no excuses, I’m just not right now. BUT I”m also extremely hard on myself about it.

So here I am, comparing myself to others. One way I tend to do this is through my appearance. I have always loved clothes and makeup, but I’m also a bargain hunter. Clothes I am very reasonable about, I love to find something on a ridiculous sale, see that it is good for me, and buy it. I get caught up in that. When I was heavy the first time, I bought stuff I didn’t need and would never wear. I have since broken myself of this habit, and my wardrobe is very sensible. I am careful about what I choose, and I pride myself on looking good on a budget. Makeup is another issue. I love the “free with purchase stuff”, and with more disposable income after my master’s degree, I would indulge myself by being able to buy good makeup.

Dont’ get me wrong, I am not sitting here with a glut of makeup I never wear. Yeah, I have a few mistakes, but most of what I have is stuff I do actually wear. I just don’t buy it at drug stores. I do have a lot more than I actually need day to day. There is no need for me to have all that I have. That will have to change. My habits, much as I did with my clothing habits, will change. Here’s the kicker.

I spent about fifteen minutes today combing every nook and cranny of my house. Every pants and jacket pocket, every purse, every drawer for lip balms. Most women I know….maybe not all, but most, have about sixty gajillion lip balms. And why. How many do we need? Three. One for your nightstand, one for your purse and one for wherever you get ready in the morning, to put on after you brush your teeth. how many do I have? About twenty. Some that cost a dollar, some that cost twelve. Who pays twelve dollars for lipbalm, what, am I thinking it will make me look like Angelina Jolie the minute I put it on? I think that most women really do have this chapstick issue, and we need to get over it. Let’s not start on lipsticks, because that is a separate, shameful class of it’s own.

So when I get nervous about the budget we are now on, this is what I am going to do. I am going to look at that little bag, and I”m going to realize, as I did today, that living on a budget will be easy because what I am changing is my attitude about what I really need versus what I want. I have gone from being a compulsive shopper to a sensible one with my clothing…and now I am looking at other areas of my life and realizing that I can do that too. Who in the HELL needs twenty tubes of chapstick, for the love of all that is good and holy! Living on a budget will be easy, because there are so many things that I was able to do because we had a double income. Cutting these out will not be a sacrifice. If I don’t get that by looking at the magical lip balm bag, Ben is right there next to it. I would cut off my right arm for ten dollars if I knew it would make him happy.

I know that this seems crystal clear to others, but for me it is cathartic, and writing it all down makes me feel great. 🙂 It makes me sound ridiculous on some level, but I don’t really care. I always throw the money issue into conversations with others about staying home, and it really does make me sound desperately worried, and I have no reason to be. I’m slowly coming to terms with that, and it makes me feel really really good.

July 19, 2006

Hi everyone.

What a week. We’ve been spending a lot of time indoors because the heat and humidity are sooo hard on little Ben. Thankfully, it’s starting to cool down now, so maybe we’ll venture out for a walk tonight.

We’re gearing up for our trip to the UP next week. I am amazed how much STUFF it takes to travel with a baby. I’m not really a LIGHT packer, but I’m a lot better than many people I know….but Ben, Ben is high maintanence. 🙂 So we’ll start packing now and hope I finish by next wednesday. Scott and I have set up ground rules, whereby I pack and he is not allowed to ask any questions until I tell him I’m done. Then he can ask anything I want and make sure I haven’t forgotten anything. If he asks too soon, I lose all track of what I’m doing and my mojo is totally thrown off. And it’s so much easier if only one of us packs Ben’s stuff. Any other road leads to madness, people, MADNESS.

If you get Time magazine, there is a sweet article this week about a couple with Down Syndrome who got married. It talks about many of their hurdles pre and post matrimony, as well as how public attitudes are starting to change about Downs. It’s a great article. You can find a photo essay here: and the article here:,9171,1214946,00.html

I finally loaded up some pictures of the family reunion and Ben, so those are posted below. I’m working my way through a roll of film which I’ll have dumped onto a CD so I can put it into the computer, so you’ll all just have to be patient. Until then, however…

finally, here are pictures

Happiness Runs in a circular motion…

July 12, 2006

Hi all.
In the good news, we had a fabulous weekend at Scott’s family reunion, I will be posting pictures later this week. Ben was passed around and fussed over, and that made him happy to no end. 🙂 He also met a lot of new cousins and relatives that he won’t remember….but not to worry, I tell him, everyone with big familes has this problem. haha. He is having a good week, although his breathing has been heavy and he’s sweating a ton more than he normally does (which is more than a normal baby anyway). I”m a bit worried about the heat and humidity this weekend….that always tends to be hard on him. We’ll just keep an eye on him and see what happens. We are going to the park today and walking at the mall, so it’s a big day!

Last night Scott and I had a date night! Nana (Scotts’ mom) and Aunt Beth came over to stay with Ben and Scott and I got out on our own. Amazing. 🙂 We saw Pirates of the Caribbean part two (thoroughly entertaining!). It was fun….our anniversary was last week and we went out to dinner…with Ben…he was a great baby throughout dinner, but it wasn’t very romantic. 🙂 Last night, then, was a fun adult night out. 🙂

In the bad news, our camera broke!!!! I do have pictures of the reunion, I’m just too lazy to photobucket them right now…but we are looking for another camera because we can’t possibly be without a camera for long with Ben. 🙂

Ben is starting to laugh more often now…it’s always random, we can’t make him laugh very often, though we can make him grin. The other day I was driving and heard him laugh in the back seat for no apparent reason. It cracks me up. It’s this little chuckle that comes out of nowhere. He is a totally strange little man. 🙂

A long awaited long update

July 6, 2006

Happy fourth to everyone. The past week has been crazy busy!

Last Thursday Ben and I went to see the “music lady”. The Parents of Down Syndrome (PCDS) group, which is a parent support group for familes who have children with Down Syndrome, has programs twice a month in the summer with “Miss Paula the Merry Music Lady”. Miss Paula does music, dance and activities for the kids. The programs are attended by not only kids from the PCDS group, but kids from the early on programs at the Wing Lake facility in West Bloomfield. Well, Ben is a little young for dancing and parachute playing, but he had a great time hanging out in the Bjorn while I met some other moms and talked with some I had already met. We had a fun day, and we’ll be back in July…maybe Ben will stay awake for the next trip! I like taking him to things like this, but I’m always aware of where we are and who might try and touch him….we wear the Bjorn carrier because it is less likely that people will poke at him while he’s on my person. And Ben likes it. So far he has only been facing me….he has enough head control to be facing out (the structure of the carrier gives him the torso support to do this, too), but every time I talk he cranes his neck backwards to see me, and it just gets ridiculus. We’ll work on this around the house in the coming weeks. 🙂

The fourth of July was sooooo much fun. Scott and I always go to Ludington, as I stated before, to stay with some friends at their cabin. It is relaxing and fun, and we look forward to it every year. We were a little nervous about Ben traveling on a three hour tour (haha) in the car, but he did well. We stopped halfway to change him, get him out of the carseat and make sure he was okay….Ben slept on….as usual. 🙂 As for the cabin time, he did SO well….we went out on the boat, he went swimming (kind of..) and just had a great time. We bought him a small PFD (personal flotation device…a lifejacket), which he doesn’t mind…and he was really cute in it. For some reason we only have video of that, though…hrm….. Next weekend (saturday morning, in fact) we will be going to Scott’s family reunion near Coldwater, so that will be another big landmark in Ben’s summer.

In more every day items, Ben is ALMOST twelve pounds….eleven fifteen, he has recovered nicely from his cold and is back to normal activities, which include sleeping, eating, smiling, and being cute. He is getting much stronger with his neck….most of what limits his mobility right now is his lack of torso control, but we’re working on that. when he is held up, his neck os pretty stable, and he is able to look around. He is too snuggly to lift his head when we hold him, so I’m trying to hold him away from my body more often….he just likes to snuggle into my shoulder too much. How can that be a bad thing? We have been talking with the nurse about getting Ben immunized…originally, when we talked to the Cardiologist, it was left up to us…we decided to wait…but Ben is going so many places and doing so well that we have decided to take him to the pediatrician and get him immunized….I already know he is NOT going to like this. 🙂 The hospice nurse and doctor are working on contacting the pediatrician to let them know about Ben’s history before we go. Who knew we would get to this point?

As for that, I know that a lot of people are saying to us “Isn’t there anything they can do” with a lot more frequency. As long as we know that Ben’s heart is not changing (which it is not) and the outlook for surgery is no better (it is not)…then yes, there are things that can be done, but in our opinion, they are not things that SHOULD be done. I know that people make these comments because they have come to love Ben as we do, but remember that for us and for Ben life is all about what we are doing right now, it is all about today, it is all about being normal for as long as possible. Medically, the only thing that has changed is that Ben is stronger than we thought. Scott and I choose not to spend whatever precious time we have with him traveling from place to place every month looking for answers that we want to hear, rather than facing the truth and living life to it’s fullest as long as we can. I know you love Ben. Believe me, I know it. The best thing to do for him is to make memories and teach him that life is to be lived to it’s fullest, and that is what we are doing. Ben is surrounded by love and he is thriving on that. He is living life with so much joy and grace. Please do not be sad for him, share the joy and love life with him while he is here.

On a lighter note, There are new pictures

Happy fourth!

July 1, 2006

Ben is feeling so much better this week! He is eating again, and gained back the weight he lost this week. So in honor of this, we are taking our first Ben-vacation….or vacation with Ben, as it may be….we are going to Ludington for the fourth. We’ll surely have lots of pictures when we get back, and lots of stories to tell. I hope everyone has a great fourth of July. When we get back, I”ll tell you all about the music lady and Ben, the Fourth, and all Ben’s new tricks. 🙂