Monday, November 29, 2010

11 months

Dear Dylan,

I can't believe that in a mere month, you are going to be a year old. I just don't even know where all the time has gone. I can't believe that a year ago, I was anxiously awaiting your arrival. You were crowding my right side because that's where you loved to nestle. You didn't move much... rather, you were probably moving fine, but I had so much amniotic fluid that I couldn't feel you.
So, what are you up to these days?

~At your last doctor's appointment, you weighed 17 lbs and some ounces. I'm preeeetty sure you're going through a growth spurt right now, because you have been gobbling everything in sight, so you probably weigh more than that now!

~Oh yes, my friend, you have been eating like mad! You never showed interest in eating until this point, but now you want to taste EVERYTHING. This past weekend alone, you tasted a biscuit from Cracker Barrel and some shredded Monteray-Jack cheese. That is on top of regular ol' baby food!

~You're getting stronger every day, too. You're not sleeping as much, you're flip-flopping out of diaper changes... gone are the days of my content little munchkin sitting still for diaper and clothes changes!

~Speaking of which, you still wear 6-9 month clothes and size 3 diapers.

~You went to your first Festival of Lights this past Friday. You missed Christmas by a mere 4 days last year, (and then of course you were in the hospital for a month, so the Christmas lights were all gone by the time you got to see daylight.. or should I say nighttime) so this was something special for you! You were all bundled up, and we laughed and laughed at how you yelled at the lights in the park!

~You are still sweet and loveable, but the stubbornness shows itself quite often too. You still refuse to sit up unless it's your idea. And in fact, you've decided that tightening up your entire body and refusing to bend and yelling is the best way to NOT have to sit up!

~You're making more and more noises... but still no "mama." Although sometimes you will sign it. It's probably just an accident more than anything, but hey... I'll take it!

~We love you more each and every single day.

Thursday, November 25, 2010

I don't write about Ds often.

Maybe it's because I don't think about it very often. Oh, it has changed me. It has changed my entire family, in fact. We are more sensitive people now because of Down syndrome. But I don't think about it often.

I don't always "see" Down syndrome when I look at my son. I see myself (my lips, my chin...), I see my husband (his cheeks, especially)... I see my beautiful son. But I don't "see" Down syndrome often.

I realize it's there. Oh, I've realized that since the moment I found out at around 24 weeks gestation. It was a huge, scary monster to me back then. It was a curse to me. A "why me? Why US?" But it isn't anymore. I can see that my child is delayed, and I know that's all "part of it," but I'm not worried. Ds is just a tiny part of the whole. But I do realize it's there.

When I read other Ds blogs, there are times when I just can't relate to the feelings. And then there are times when I can. And there are times when I can't relate to what their children are going through. And then there are times when I can. And there are times when I can't relate because MY child isn't doing as well as theirs. And then there are times when I read a blog about a child that is the same as Dylan. Don't get me wrong... there are several Ds blogs that I read (when I have time to read blogs, that is) that I just adore. But I don't always relate.

Is this normal? Am I in some weird form of denial? Do I have to respond a certain way to our new normal? The answers are yes, no, and absolutely not, respectively.

I'm writing this down because I'm hoping that someone out there will feel the way I do and stop feeling badly about not feeling badly enough. Or stop feeling wrong about not worrying about Down syndrome all the time. I'm writing this because we ALL have our own journeys in this... we write them so we can vent and just in case anybody can relate. It's not a competition or a contest. It's our lives, and we live them the best way we know how. And the way I know how to live my life is just to live it. To deal with the feelings as they come, and to be okay with the fact that I am responding how I'm responding.

That is why I don't write about Ds often.

Sunday, November 14, 2010

Dylan's boo boo face, FTW

How can we EVER say no to this face?

Spoiler alert: We can't.

Thursday, November 11, 2010

Dear Pediatrician,

A letter to my sons' pediatrician:

Dear Dr.,

Remember when you said that little M had 4 months to clear up his speech or you would recommend testing/therapy for him?! You know, after you had known him for all of 5 minutes? (If even.) Yeah, well... I'm the type of mother that, when you plant that seed of doubt in me, I will worry and worry and worry about it til I'm a nervous wreck. Luckily for us, I happen to have a friend who is a speech pathologist. Her name's Bonnie. Or Dr. Bonnie, as I like to call her. Which is not a joke, since she does, in fact, have the title Dr. in front of her name. And she and I (and our friends Lori and Leilani) went out to eat last Sunday. And Bonnie sat beside my 3-year-old and talked to him. And about oh, 5 minutes into the conversation (that's about how long YOU gave him, right?), she looked at me and said, "oh, you have NOTHING to worry about. His speech is MORE than just FINE." The difference here, Dr.? Bonnie knows a thing or two about speech. Bonnie also knows my child. She also understands that 1) there's a baby in the house, so baby talk is frequently used, and he's a good imitator. 2) Little M's grandmother watches him during the day, and his grandmother is Korean. Little M doesn't know very many Korean words, but again, he's a good imitator. 3) Little M loves the sound of his own voice and loves to be the middle of the conversation, the center of attention, and hates to be left out. (Which is what *I* thought all along.)

I'm writing you this letter that you'll never see, unless you're stalking my blog somehow, because I really think you should, I don't know, get to know your patients better before scaring parents?? I'm nobody special... but I know people who are somebody special. Like Bonnie. Dr. Bonnie. Who made a good week or more of worry go away with a 5-minute speech assessment.

I will continue to use you as our pediatrician for now, because you're great with Dylan and his issues. But watch it.

Sincerely yours,

M and D's Mommy

PS: Thank you, Bonnie, for listening to little M talk... and talk, he does a lot of! Oh, and letting him pat your leg. lol


A huge, sincere thank you to all the men and women who have proudly served our country. Thank you for the freedom to write this gripy letter I've written today. Thank you to my grandpa, the late John (Bud) Sweeney; my papaw, the late Monroe Mitchell; and my father-in-law, Mike Culbertson, for doing your part to keep us safe.

Saturday, November 06, 2010

Because I don't ever want to forget...

A few days ago we had to go grocery shopping. Shopping near the first of the month is always a blast, no? Anyway, I needed to get some new Band-aids, as the three-year-old 1) gets boo boos quite often, and 2) loves bandaids. So I figured I would let him pick out what kind he wanted. As we strolled down the aisle, we saw Cars (one of his favorite movies ever), Spiderman, Transformers... all these "boy" bandaids that I thought he would love. But my child had something different in mind.
This is what my child picked.

...and the first words out of his mouth when we got home were, "Where are the Dora bandaids??" He had a scratch on his chest that he wanted to cover up with a Dora bandaid.

Unfortunately, he seems to be a little allergic to the adhesive on the bandaids (gets that from dear-ol'-mom, as I'm allergic to several types of adhesive), so we might have to get a different brand in the future. But I don't mind that he picked Dora. Daddy peppered the shopping basket with some Hot Wheels cars, but he does that every time, so I don't think he was doing it to combat the Dora. The Dora bandaids' outlines are in pink, but nobody here cares. He's 3. And it's adorable that of all the things he could pick, that's what he wanted. :)


In other news, it's my mom's birthday today.

This is my mom. (Gorgeous, yes?) She is probably THE best woman I know. She is so strong... no matter what she's going through, she comes out on top. She is a loving, caring person.. she was a devoted daughter to both of her parents, and was essentially the hospice nurse for both of them. I know it gave them both such comfort to be in the care of their only daughter, the best nurse ever, in their final days on Earth. How iron-clad you would have to be to be Nurse Daughter instead of getting to be Grieving Daughter in those days, but she did so with no complaint. My mom loves her children, her 9 grandchildren, and her daughter-and-sons-in-law with all her heart and soul. I could sit here for hours typing (one handed with a wiggly 10 month old in the other hand..hehe..) about all the sacrifices she made for us. She was a parent of 5 young children on her own. And I think we all turned out pretty awesome!

Happy birthday, my sweet, wonderful mom. You deserve all the riches in the world... but I hope a blog entry suffices. hehe. I love and respect you beyond measure.

Tuesday, November 02, 2010


Today was long and eventful. Dylan and I started our morning bright and early with an 8AM appointment with opthamology. I pretty much asked to be referred to the opthamologist for Dylan because D's geneticist said he should have his eyes checked within the first year. So when the opthamologist started asking why I felt D needed to be there, it was all I could do to not say "Your guess is as good as mine, lady." Anyway, the opthamologist was very nice... she said that Dylan has a severe case of "cutie pie"... but other than that, his optic nerves look great. She said he's "just the right amount of far-sighted for his age." So no super cute glasses for the boy at this point, but that's okay! I'm feeling blessed that his eyes are great!

Daddy and little M joined us shortly after the opthamology appointment, because both boys had check-ups with the pediatrician. It should be known that little M had never seen this particular pediatrician before... and, in fact, he hadn't been to any pediatrician in over a year because he's just a super healthy kid. (Thank God for that). It should also be known that little M? LOVES LOVES LOVES to jibber-jabber. I think if you've read this blog any amount of time, you'll know that little M has always been a pretty good talker. He says zany, off-the-wall things every single day. Sure, sometimes he talks fast or mumbly and you can't understand every word he says every single time he says them, but most of the time you can understand him perfectly. Except when he's speaking Michaelese. My child has been a champion babbler since birth, practically, and it's a skill he has chosen not to completely give up yet. I suspect it's because he LOVES the sound of his own voice (and hates to be left out of conversation, but doesn't always have the "words" to join the conversation). SO, when Dr. S came in, little M decided that it would be a good time to babble at her. And so this doctor, not educated in the ways of little M, told me that she was giving him 4 months to clear up his speech because by now he should be talking more clearly than that. *sigh*... I just smiled and said "he can talk just fine. WHEN HE WANTS TO." In a little bit, he wasn't paying attention to her anymore, and he started talking about something that was going on out of the window... and using full sentences... and talking clearly. So then she was like "oh, so he CAN talk plainly when he wants to." Yup, lady. (PS: I would have refused any testing or intervention for him anyway. *I* know he can talk just fine.)

Oh, and guess who's "chunky" and we need to make sure he doesn't "get so fat"? Welcome to the world of Dr. S. *sigh* lol

I still like her though. She's an acquired taste, for sure, but I do like her. Plus she thinks Dylan is our miracle baby... and she's right about that. :)

So anywho, on to their stats: Little M weighs 35 lbs (75th percentile) and is 3 ft 2 inches (49th percentile). Dylan is 17 lbs 3 oz (50th percentile on the Ds scale, less than 3rd percentile on the regular scale), and 26.5 inches (25th percentile on the Ds scale, less than 3rd percentile on the regular scale). So apparently I grow 'em short and stubby. :)

Apparently little M's old pediatrician's office let little M get 2 shots behind on his immunizations. So he got the 2 shots today. He did pretty good for someone who doesn't even remember the last time he had to have shots. He only cried for a short moment... just until she put the bandaids on his legs. Because bandaids? His FAVORITE THINGS EVER. Oh, and he had the flu-mist or whatever it is. The up-his-nose one. Dylan only had his first round of flu shot. Lucky ducky!

(Stop right here: Yes, I choose to immunize my children. No, I don't care if you don't immunize yours. To each his/her own. Nope, we're not gonna debate about it. If you're parenting your children the best way you know how, you're doing it right. Thanks!)

Oh, and today I voted. I hope you did too. Because if you didn't, you can't complain. :)