Home at last

We are home, everyone is doing well. Oddly, all 3 of them now have a cold and I'm feeling great. No one bothered to take a photo of me letting Cupcake suck on my left pinkie while she sat in her bouncy chair as I fed Biscuit a yogurt with my right hand at lunch today. (Why was I doing that if there were people here that could have taken a photo, you ask? Well, my husband brought me lunch and was on his way back to work and his mom dropped off some lasagna on her way to work. They took a moment to watch me, but then they took off.)

Today is my first day home with 2 KIDS. Who the heck let me have 2 kids??? Heehee. It went pretty well, but it sure was nice to have last week to just get a rhythm with Cupcake. She is a pro-breastfeeder. Doesn't like to burp though, so some meals come back up. I've learned to just keep going and insist that she burp. No point in sitting there and her working so hard and then having it all end up on my shirt.

I decided to go ahead and put a few photos up on my Flickr account.

Homeschooling for kids with Ds?

I'm really loving this discussion over on Kerflop. I'm one of those people who was gifted and yet never bored in public school because I could find something to learn (not to mention that since parental disappointment was my greatest fear I never would have acted out if bored).

Now I'm faced with this same kind of decision with my son at the ripe age of 2. I've already been asked twice by his educational team if I've thought about what I want to do with him next year. Since he has Down syndrome he is eligible to start in the public system at age 3, but I'm not sure that even early school with trained professionals is the right way to go with him. Every child is an individual and he is (thank you, God!) at the far end of the spectrum of developmental delays. He probably isn't going to be reading above grade level like I was, but that doesn't mean that he won't be bored and unchallenged in a special ed class. I'm concerned that we will lose all the gains we've made if he's put in a situation that expects him to be slow in areas where he is not just because of a label that has been applied to him.

Really, our concern is that he will start on a path that will lead to an attendance certificate when he actually could earn a diploma. I don't want to squelch any of the joy that he has, for life or for learning. Now if it turns out that even with the best help he isn't capable of earning a diploma then (while heartbroken) I will accept it. But I'm not going to give up when the boy isn't even 2!

SO, (blah, blah, blah) I love the links and advice that I've been able to read on Kerflop, but does anyone out there have links and advice for kids that are not geniuses and gifted and skipping grades?

Autism Speaks video from Five for Fighting

"Yay" to Heather from OMSH for her post that led me to this video about Autism by Five for Fighting. I didn't see the info on the video page about the band donating money, but I'm willing to take her word for it. Besides, I heard a great song and learned a little, and what's so wrong with that?

I have to admit that I do have one concern though: do we really want a world where everyone with every kind of difference is cured? I've been through this with deafness, I've been through this with Down syndrome. I haven't yet learned how Autism would be different. In my opinion it would be better if we could accept people who have differences and learn to value their outlook on the world as equally valid to the "normal" way of seeing things. On the other hand, I can imagine that Autism can be (emotionally if not physically) painful for those who have it. I certainly wish that pain could be removed, but... I want a world with unique people who have interesting perspectives.

View from my bed-chair

I don't know what happened with Beth and her blog, but I wanted to put this up to show that I really did put her poem up in my son's hospital room (with permission of course -- and that's Gumball the Kitten next to it). This was my view when I would get up in the morning. Well, when I would get up the second time. They sent a tech and a mobile x-ray machine around at 6am every morning and since I'm pregnant I always had to get up and wait far away until they were done. Then I could go back in, help The Biscuit settle, and we could get a bit more sleep. But by the time I was awake and my husband was there with my Starbucks' hot chocolate, this is what I saw. Pretty nice view if you can forget that you're sitting in a Pediatric ICU.


Here's a close-up of the poem. It's big enough to read over on Flickr if it isn't here.

Real Moms meme

Thank you Kerflop for pointing me to this particular entry in the Real Moms meme. It's beautiful.

I was just walking my almost-2-year-old Biscuit to sleep for his nap, and thinking how we are going to do things differently with The Cupcake. I'm going to try the advice I read (I think in The Happiest Baby on the Block) and start laying her down to nap when she is drowsy around 6 months old instead of rocking her until she's completely asleep. And that made me flash on how some day I'm going to have to explain to her why we did things differently. At first she'll probably only be old enough to understand that Mom and Dad learned from the first time and so she got the benefit of our experience. But there will come a day when she'll think that she didn't get special cuddling treatment because (Oh, please, God!) she doesn't have Down syndrome. And that's not really why. It's because of that heart surgery which loomed so large from the time he was 3 days old. I was so afraid that he would not survive the surgery or that it wouldn't be enough of a help for him and so he wouldn't live; I thought that the days I had with him before his surgery might be the only ones. So I sat in the glider and sometimes napped with him for every nap and every night before bed.

After laying him down for his nap about 20 minutes ago I came downstairs to my computer to read a bit, so amazed that after almost 2 years it can still hit me so hard how much I love him. I kind of got over that by starting to read and BOOM there was the link on Kerflop.

I don't have any photos of me walking him or rocking him to sleep, so I'll just post this of our glider.




Real moms rock their babies to sleep, even when the parenting books tell you that you shouldn't.
(They also use $20 chairs from Ikea as side tables.)

The Mommy-Brain is not full of junk -- or empty!

I just read Meagan Francis's article on The HUB and was amazed at how much better it made me feel. Like a spring breeze on a warm day (yes, we are having some great weather recently) I feel validated and renewed.

If you want to read more of her writing check out her blog. I think I originally found her through an article about Mommy Bloggers in Parenting Magazine. I think. Some details are foggy. I'm still going to use Pregnant-Mommy-Brain as an excuse.

So much to do!

I went for my week 33 prenatal exam today and was given a sheet of paper with my daughter's birth date on it. It felt so weird, like I had just been told what day was going to be special in our lives for the rest of our lives. It made me forget half the questions that I had wanted to ask on this visit. But I guess that's normal when you are scheduling a c-section.

The Biscuit is doing well post-surgery. He seems to be waking up in the night teething, not with any pain left over from the actual operation. Poor guy has one tooth after another moving with no breaks.

I am doing well, other than feeling sleep deprived no matter how much sleep I get. I'm very much looking forward to this lull-before-the-storm that is this March. I can feel the frenzy of The Cupcake joining us in late April coming now, and I am appreciating the moments of quiet (like now) when The Biscuit is napping and I can just sit and write. Although lately I have been sitting and reading. I don't think I read any email last week at all unless it was from my husband. I got really behind there.

We will spend the next few weeks moving furniture around (we are trading bedrooms with The Biscuit) and throwing away clutter. Last pregnancy I was all about "do we have to buy this?" and this time it is "we can throw this out, right?" I just want to get rid of everything. Too bad I'm the one with no energy and am more of an idea person now. Poor Hubby has to do most of the actual throwing. But I'll get that cake baked for him today, which should make him feel a bit better!

Exhausted, Part 2

We are home. Everything went well. So well that the surgeon told a joke. This was a few days after the surgery when The Biscuit was still in the hospital. Thank goodness I had nurses who know his personality to be amazed by that with me. Otherwise I might think that I was imagining things.

Basically, The Biscuit is great, but I am whacked. I get exhausted to the point that lifting my arms seems like this huge effort. I think that only cat-napping all night long for about a week probably has taken it's toll. And then coming home where for most of the day 31-week-preggie Mom is here on her own is really hard. I always forget how comforting it is to know that if things don't make sense or you need another pair of hands you can just press a button and someone comes to your rescue. Heck, I hardly changed a diaper on my own the whole time we were there thanks to all the tubes and wires (and the temperature probe that I was completely afraid to re-insert because what if I put it in too far and hurt the poor guy?).

Thanks so much to everyone who commented and sent their good thoughts and prayers our way. I'll be able to respond to those more coherently when I can shake this exhaustion. I just wanted to post about where we all are for memory's sake and to say that we made it home ok.

Exhausted

I am emotionally exhausted from today's pre-op events and really, we haven't even started. It's only going to get worse.

The Biscuit is having heart surgery on Thursday. More than that, I'm not comfortable sharing. My husband and I want to protect his medical privacy so have decided to be very guarded about what we share and where. Obviously, I've mentioned that he has Down syndrome, because without that so much of what I say here and leave as comments on other blogs just wouldn't make sense. It's a big part of where I'm coming from. And he had a congenital heart defect that has been repaired. However, that just made them able to see that there was more that needs fixing, hence the second surgery. The main problem we have is that the Down syndrome will follow him his whole life. He will have struggles that we can't imagine. We don't need strangers meeting him someday that know more about him than he does. And we don't need him to not get a job that he wants because they are worried about his heart or something. It's far-fetched, but we are doing what we feel comfortable with.

So, that is why his real name is not in this blog. Nor any photos of him. Nor his detailed diagnosis or details of his surgeries. But thank you, so very much, to the people who have asked. I can only assume that you do so with kindness and care in your hearts, and I thank you. I take it to be the blog-world equivalent of bringing us a casserole. I hope you can understand why I feel the need to protect him as best as I can while still allowing myself a place to express myself.

Today we saw the cardiologist, heart surgeon, had x-rays taken, and had his blood drawn. I knew how he would hate the blood draw, but I had not seen him sitting in the little plastic device they use to hold small children still for an x-ray. His arms were straight up in the air (holding Dad's hands) and he was encased in 2 pieces of plastic that went up both sides almost to his wrists. There was a small opening for his face, just wide enough. It was horrible. I had waited out in the hall last time on the off-chance that I might be pregnant, while my mom stayed with him. This time they had me go behind the glass so I could "stay" but all I could really do was bear witness to the awfulness of what he must have been feeling. I felt horrible for my husband because I hadn't realized what I was asking him to do when I asked him to take the day off work and come, especially since I couldn't stay with The Biscuit for the x-ray part. I just had no idea. If I had known I would have asked my mom to come with me instead.

When all of this was finally over and we got home there was a message waiting for us that they need to re-draw some of his blood so could we call them? Dear Lord. We had already made a promise to The Biscuit that he was done for the day. So I called and asked if the doctors would have their lab results in time if we came back for the re-draw tomorrow and the man on the phone was so nice. "Oh, yes, ma'am. Absolutely, ma'am." He had answered the phone the way anyone would an inside line who talks with co-workers in other hospital departments all day would, but when I told him I was a mom and that I was concerned about surgery being postponed if we didn't come in until tomorrow he spoke to me with such caring and reassurance in his voice. It was really very sweet. Too bad I didn't think to get his name so that I could say thank you. They have little pink cards all around the hospital so that you can let them know when someone does a good job. Maybe I can find out his name when we are there tomorrow.

I don't know when I'll have the time or energy to post again, but rest assured that I'll be back when I can. Tomorrow I get my haircut; one thing I am doing for myself so that at least my hair might look ok after sleeping in one of those chair/bed contraptions. I don't honestly know at this point how I'll be able to leave his room to come home and shower. Maybe this is the hospital stay where I'll use the shower they have for parents on the pediatric floor.

See you all when I get back.

Bloggers are very cool people

Go take a look at this lovely poem that Beth posted today. And thank you, Beth, for permission to print it out! I'll take a photo of it when I hang it up and share that.

Keep them in 5-point harnesses!

I've seen this video once before, but now she's donating money based on people leaving comments. Go look at the video and learn why it's important to keep kids in 5-point harness restraints until they are 80 pounds.

Don't watch without some nice, soft Puffs with Lotion though.

Then leave a comment to up the donation by $3. All it costs you is a little time and you learn so much.

I Missed Blog for Choice Day

But that won't stop me from writing about it!

I first heard about it on Daring Young Mom's blog and felt like I had a lot to say, almost too much. Then when I saw Owlhaven's post, with it's simple and heart-felt message that cuts right to the heart of things I figured out how to say what I wanted.

There are countries in this world that are thrilled to announce that their Down syndrome birthrates are declining. Sadly, the reason these rates are declining is not because they have found a cure -- unless you call very early prenatal testing and abortions a cure. I don't.

I found 2 articles (so far) that share my view that people with Down syndrome are worth giving birth to. Their lives are not so short and empty that they should be aborted. And since there is no cure, what else can early testing lead to?

The first is by Patricia E. Bauer and was in The Washington Post.

The second article is by George F. Will and appeared in Newsweek.

My husband and I were lucky, I guess. My OB/Gyn asked us if we wanted amniocentesis and we asked back weren't the risks of miscarriage great at my "advanced maternal age"? He said yes and then asked the big question: Is there any reason that you would want to terminate the pregnancy? We both said no, so he agreed that the increased risk of miscarriage wasn't worth it. What if we hadn't been so sure of ourselves? I wonder now if his advice would have been different. As I sit here typing this and listening to The Biscuit through the baby monitor, I thank God that we didn't know so that we didn't have to deal with medical professionals that might have prodded us towards not having him.

It seems like the Choice debate always centers around women and their right to choose or the child's right to be born. We are missing out on something and it is quietly slipping by: doctors give pregnant women advice. When the doctors' information is not up-to-date, women get out-dated advice and then make life and death decisions based upon that old way of thinking. The doctors MUST be taught that the best advice is to talk to someone who is living in the situation, whether it be an adult with Down syndrome or the parent of a child who has Down syndrome or whatever. A doctor, just like any other human being, cannot know what it is like to live with something unless they are actually living with it. And we have to learn to be self-advocates and ask to be referred to support groups. Maybe after meeting some adults with Down syndrome and learning about the wonderful things that are happening today it wouldn't be so scary. And maybe then, with this better advice, 85% of these children wouldn't get aborted.

Shame on the Today Show

Have you heard about Melissa Summers "interview" on the Today Show? Well you can get it all on her blog called Suburban Bliss. There have been a lot of entries about her experience, but today's was the best IMHO.

So many have written so much about this that really I just want to add where to send your thoughts to NBC.

Their email address is today@nbc.com and their snail address is:

NBC News
30 Rockefeller Plaza
New York, N.Y. 10112


Check out this post for an example email that I loved.


Update:
Meredith Vieira has a blog on iVillage. Who knew? On Fridays she answers questions from the past week and with so many comments about her behavior during this interview, maybe she'll talk about that on February 2nd? I'll be checking in to see what she says.

Good Ds Info

I found a wonderful blog tonight through a Down syndrome bilingual Yahoo group I belong to. The dad posted a message about this article that talks about bilingualism and delay of the onset of dementia to the group and included his blog URL in his signature. (In case you don't know, dementia is of interest to the group because Alzheimer rates in people with Down syndrome is relatively high compared to the general population.)

After reading the article I looked at his blog. There aren't a lot of entries but they make the ones that are there count. There was an entry about a friendship club at a Southern California high school, another about an article I had already read in the NY Times about people with Down syndrome going to college, and two posts about a couple with Down syndrome that got married.

That last entry really intrigued me so I followed the links off to see the husband's website (classical music will start to play when the site loads -- he's a musician). There I found his page that has a video of his proposal, which certainly made me cry! I'm not sure how I found it but I also read the story on Time Magazine's site about their wedding and looked at the photos too.

I found so many treasures at this blog that I just felt a need to share. There was more, not necessarily as uplifting, that I found through their blog, but these were the wonderful parts that had me crying and smiling.

Inspired by Owlhaven's Little Skater

This was such a beautiful post! I am so looking forward to the day when The Biscuit is ready to be independent because I think it will probably be a long time coming. Right now at 19 months old he is still wearing clothes that say they are for 9 months. I keep telling myself that there are other moms who are sad because their little ones are growing up so fast and really I'm lucky. But I want him to get to that point some day.

Because of the new pregnancy and finding out that The Biscuit needs a second heart surgery, I think that I have recently started to go back through the grieving that we did when The Biscuit was born. More precisely, when he was 3 days old and they took him from my room to the NICU because of the problems with his heart. This was the same time that we found out he has Down syndrome (Ds). Oh, the tears. How could they give me this news and then take him from me? But he is such a cool little kid! He would not have this personality without the Ds, so it has made it easier to accept -- and to accept him for who he is both good and, well, not bad really, but as his mom I can't help but worry. I worry about the things that the moms of typical kids do and the things that they don't. I don't know which bothers me most. I know of a mom who got upset when her son was just a baby because she was thinking of how someday a girl was going to break his heart. Once I had The Biscuit I remembered this story and fell apart thinking "What if no little girl ever loves him?" I have the fears that other moms do -- and I fear that he'll miss those things that "everyone" experiences.

Now I worry that there will be something wrong with The Cupcake. And if there isn't? Oh, a whole other pile of worries. Will she resent her brother and the possibility that he will outlive us so that she will have to help take care of him? Will she think that we had her just so there would be someone to take care of him later? Or will he think he isn't good enough and we wanted her because he's "broken"? Some days it is just too much. Luckily I can just go sit down and play with him and all of the worry & sadness falls away. He is so cool. He makes jokes, gives hugs and kisses, and really seems to enjoy hanging out together as much as I do. And really, what more could I wish for?

Blog Portrait

Blog Portrait
Originally uploaded by KYouell.

No matter who I pick for a host, when I try to update my blogger profile it says it can't find it. Arrrrrrgh!

Update:
I figured it out, I think. I did it the way they said to in Blogger's help, even though Flicr's help said that I could do it that way but it would be wrong. Whatever, the photo's up now!

Whoops

Here's something I wrote mid-November and forgot to actually post.


So the whole blogging-every-day-in-November didn't pan out for me. Between the pregnancy sleepies and the daily care of a not-yet toddlering toddler, I was too tired at night to write. I did have a lot to say though, so I'll try to get caught up.


Frying

I couldn't find it on his website, but Alton Brown did a show on deep frying where he said basically the same thing that Wikipedia did:

If performed properly, deep frying does not make food excessively greasy because the moisture in the food repels the oil. The hot oil heats the water within the food, and steams it from the inside out. As long as the oil is hot enough and the food is not immersed in the oil too long, oil penetration will be confined to the outer surface layer and none will actually reach the center of the food.

He also demonstrated that, properly done, that there was only a teeny amount of oil that did not remain in the pan. It was insane like a tablespoon or something for a batch of fried chicken. I wish I could have found the exact quote, but whatever. So, take that, know-it-all people who think I'm a horrible mother for feeding my son some wok-fried chicken (it was NOT deep fried or battered!!!) on a special occasion when we went out to a restaurant.


Horace and Doris Beans

I can't remember why, but I wanted to blog about this recipe that's been in my family since my grandparents' time. When they were a young couple they had some friends that were called Horace and Doris after characters on a radio show. I think the wife may have been my grandma's cousin, but I'm not sure anymore. At any rate, I thought that my grandpa considered it a big secret so was afraid he wouldn't want to share the recipe. It turned out he was thrilled that someone else in the family wanted to make it. I started taking them to company bbq's and then making them for family occasions so Grandpa could have a break (there's a lot of mincing/dicing involved). It is the special food that will always make me think of him and what he and Grandma must have been like as a young couple.

Sewing

First, we are back from the hospital and The Biscuit is doing well. It was an interesting trip. We only expected to be there overnight at the most and he had to stay 3 nights. Luckily I have a wonderful husband who let his pregnant wife come home and sleep in our bed while he slept at the hospital. That part of this scary experience was wonderful.

What I really wanted to take a second to write about was sewing machines. Very Mom / Kerflop had a discussion about sewing machines and sergers and I missed out on making a comment. Since it's not a topic I want to keep quiet about I thought I'd just write my own post. Feel free to go and read the discussion for yourself if you'd like.

Being from a family that sells and repairs sewing machines and vacuums means I have a fairly strong opinion on this. I wouldn't want anything but a Singer from back when they were actually made in the US and had some weight to them. As far as sergers go, my mom got me one exactly like hers -- a White BabyLock -- and I would be totally chicken to use something that I couldn't call and ask her a question about.

Didn't take much room, but I had to get it out there. Oh, and if Kerflop herself comes over to see who linked to her entry I have one more idea. Why not look for a shop that does repairs and not just a dealer? You would be amazed at what some manufacturers require of a small shop in order for the shop to call themselves a dealer. Very high sales volume and sometimes exclusively selling their products. My uncle's shop started out as my grandpa's Singer dealership, but I'm not even sure if they are able to call themselves that anymore, because of the volume required. And frankly, people want to buy their machines at Wal-Mart and then throw them away instead of have them repaired. It's more of a problem with vacuums, but still, that's the mind-set out there so it's really hard for a small family business to sell enough product to be called a "dealer" -- and I'm guessing that the same is true in Idaho as it is here in Northern California.

Hi!

We're at the hospital right now. If you leave a message we'll get back to you as soon as we can. Thanks.

I'm tired

It's been an day again. We had a home visit from The Biscuit's teacher, which is always wonderful. He thinks she's great. Today she brought a stacking ring toy, something simple that he has only seen once at his cousin's house. And oh does he love it! In fact, he only napped because I put it in his play yard with him. He passed out with the red one in his hand. I could move the others away from his head so he could roll over in his sleep, but he wouldn't give that one up.

Sadly, he woke up very demanding, not happy, and the weather matched his mood. At least after a diaper change and some dancing his mood improved, but the weather is still foul.

I sat down to finish reading today's blog roll and came across this entry from Mom on a Wire. She really hit home today. I so relate to wanting some time off, or at least getting paid minimum wage! She made me cry. I think we'll go have a snack and see if we can't get in better moods before GrandmaP gets here to go grocery shopping with us.

Hope your day is better than we've had.