Tuesday, June 17, 2008
I am over at Segullah today. (shoot, I can't find my hyperlink page..here is the link
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...).
Tuesday, June 10, 2008
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........
Friday, June 06, 2008
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....
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.
Thursday, June 05, 2008
Ok, back to the laundry.
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
Wednesday, June 04, 2008
Really, check out the link HERE .
Monday, June 02, 2008
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.....
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.
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.
Sunday, June 01, 2008
Are you surprised? Didn't you know that my husband and I are wildly wealthy and we only travel by limo and private plane--if we can't fly private we refuse to fly at all. We also have a full time nanny, even though I am a stay at home mom. My house cleaners come each week, but they would rather play with the baby than clean (it is so hard to find good help these days). I don't know what we would do without our gardener Raphael. He keeps the flowers looking so beautiful, but I really need to get after him about the sprinklers. Did I mention that there are only certain brands of clothes that I will wear and put my children in? There are certain stores I refuse to shop in.
What? You didn't know this about me? You didn't know that this is how I live? Do you like me less now? Would you want to read the blog of a woman like this? How ready were you to come back tomorrow and talk about this blogger? I was practically foaming at the mouth and I KNEW it was ME. You don't have to admit if you made a judgement or not, but I bet you did form some kind of an opinion, didn't you? -
I know, I know, cry me a river, right? I hope that my blog doesn't come off like this (or that I come off like that in real life...) but I could because it all depends on how I present it and how you interpret it. I think that all my explanations show me to be normal-ish, but who knows? This leads nicely into another post that has been bouncing around in my head. I have even been emailing with some other bloggers (who might not want to be named) to talk about it. I have spoken about this to my IRL friends (some bloggers, some not). Why do we blog? What is the point? Do we expect the bloggers we read about to be like their blogs? Are we disappointed when they aren't? As bloggers do we feel like we owe it to our "readers" to show all of our selves? Do you struggle with only showing part of yourself on your blog? Do you feel that people view you in a way that is not at all how you are? Do we sometimes forget that bloggers are REAL PEOPLE and not characters in a book or show, even though we get to follow their stories in a chapter by chapter format, just like a soap opera? Is blogging the new soap opera? The book version of reality TV?
I was interested in seeing how far we could take this, but let me be clear, there was NEVER any question that we would even consider this show. We would not do this in one million, billion years. Mainly, we all have skeletons in our closets and ours are ones that I don't want everyone to read about in US Weekly (if the show did well, that is). Our current skeletons are just fine where they are with a very, very small audience that even cares about them. We also have our kids' families to consider. We don't want to put THEM in a position of being "found", especially Norah's mom. Nor do we want to give them (or anyone else) a forum to have any kind of say about our family beyond the relationships that we currently have. Some people have been vocal about certain aspects of our adoption arrangements and I don't want these opinions preserved for my kids to see someday. These are the kids of things that can happen when you put yourself out there for the public to view. Those are the big reasons, but there are little ones too. You don't get to choose how you are portrayed on reality TV. We could be cast as the sweet, religious family, or we could end up being the rich, spoiled family that adopted kids but then didn't bother to parent them and left them with the nanny while we jetted around the world on our private plane. Also, I am not at this point willing to be the spokesperson for Down Syndrome, Mormonism and/or adoption. I am not willing for my choices to be debated the way that I have seen others debate and cast judgement on people that are on TV (myself included..I often forget that they are real people and not just characters...). Not my thing. I started asking around if other people would do a show like this. Most said no. Then I asked if they felt that their blog was the same thing. Most said "no...maybe...sort of......wait.........". Then I wondered if my blog was the same thing. I had certainly put myself and my family "out there". What was the point? Do I sometimes wish that I had kept it all with code names and no pictures so that people didn't really know who I was? Would that change what I would right? (you bet it would....).
Remember before when I said that I was aware of bloggers that were popular in blogworld and came across one way, but that the people in real life were not nice. That is true. I was mostly thinking about myself, but there are others that I would say aren't much like what their blog persona is. Keep in mind that doesn't always mean that on the blog they are "nice" and IRL they are not--some come across much more outgoing or introspective on their blogs than they seem to me IRL. But I realize that I only see a few sides of people. Very few people ever really, really know all of our sides and see us at our very worst and most raw. On a blog we get to CHOOSE what we show. It is like the worlds longest (and biggest) internet dating relationship. We can pick the best pictures to show and tell our stories in a funny and witty way. That is very different from being late to church and still in maternity clothes, having your kids scream all through nursery and then have to deal with one child peeing through his clothes and another biting a classmate. I didn't exactly CHOOSE for that to be the introduction of our family to our new ward, but that is the way it was (what can we say? We are going for the whole "set the bar really low and shock them later when you show them that your children actually CAN act like human beings" thing in this ward...). On a blog we can be the person that has very clever and fun things to say about the latest episode of Top Chef (which is tonight...yay) but you don't see that we have absolutely NO patience with our kids right now and pretty much hid from them all day. It is like being on dating behaviour all the time but I never have to get out of my PJ's. I'd say what Facebook is for my little brothers, blogging is for me. I can interact with people on a level that I am comfortable with and share what I am comfortable with.
OK, this is part one and just some of what is bouncing around in my head. I would be interested in hearing about your view on some of the questions I have asked. Mostly because it is going to be interesting to see if YOU respond in the way that I think you will...from what I know about your blog persona.... I have always wanted to just write down what I think that the people who write the blogs I read are like and see how close I am....