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Learning to walk the tightrope of motherhood...

Monday, November 8, 2010

It Takes A Village...to Raise a Parent

'Tis the season for giving thanks, and, as I watch my friends posting 30 days of thanks on facebook, I reflect on those in my life I am grateful for, especially, this year, my ever-growing support system.
I am grateful for my babysitter, who lovingly cares for Meredith, practices her exercises with her, and offers just a smidge of helpful motherly insight from time to time. (Did you know that diaper rash is more likely to occur when your child is on an antibiotic?)
I am grateful for my boss, and my husband's boss, both of whom have been more than generous and flexible in allowing us, even encouraging us, to manipulate our schedules and take time to attend appointments with Meredith.
I am grateful for the medical practitioners we interact with regularly...doctors and nurses who dote on our daughter and therapists who guide us in supporting and challenging Mer to reach her greatest potential.
I am grateful for my in-laws who have always welcomed me in to their family but whose embrace has been even tighter this year.
I am grateful for my parents who work hard to stay close, despite the miles between us, and who make family get-togethers a blast.
I am grateful for my brother, who has always been fun to be around, but even more so as he gets older and more, dare I say it, mature. Mer is lucky to have him as one of her uncles!
I am grateful for my sister, who is one of my best friends, and who, along with her girlfriend, overwhelm me with their unconditional love of Meredith.
I am grateful for my daughter who teaches me to slow down, relax, and enjoy the little things.
And, I am grateful for my husband, whose patience calms me down and helps me focus on what's important. He supports me in projects I undertake, understands when I need a break, and laughs at me when 2 years later it's still only half finished. :-) I am more and more lucky to have him every day.

Sunday, October 31, 2010

Trick-or-Treat

Amoxicillin is a trick. Blue eyes and beautiful fall days are such a treat!
So, last Friday (a week ago) we took Mer for her 6-month well-baby check at our wonderful doctor's office. She weighed in, in the fly-weight division, at 11 lbs 14 oz, which puts her in about the 35th percentile for weight on the Down syndrome growth chart for girls. This is a little bit lower than her last visit, but our doctor is FABULOUS about reminding us that the curves on growth charts are made of averages of LOTS of babies and that each individual's chart usually looks more like a series of stairsteps, with sudden spikes and then more flat lines. This is, he says, probably a flatline time for her with a growth spurt right around the corner. What he was more concerned about, however, was the yellow gunk that has been coming out of her nose for the past two weeks. He quickly put her on a prescription for amoxicillin.
Now, those of you who have children know that giving a baby medicine is not necessarily the easiest thing in the world. (Those of you who have pets can imagine...it's really very similar!) We were just figuring out a system, on Friday, when Greg discovered a slight rash on Mer's torso. By Saturday, we were on the phone with the doctor as the rash had spread to her face and legs. Turns out, it took a week to show up, but Meredith has her first medical allergy, and we will be reminded of it for the next 3-6 days until it fades away.
The treat for the weekend, however, is that the allergy did not really explode until yesterday evening, so we were able to enjoy 2 beautiful days this weekend out "trick-or-treating" with Meredith. Friday evening we met up with some of Greg's colleagues to explore the Halloween festivities that JMU's Greek population has to offer...mostly bucketfuls of candy for every child in site! But there was warm apple cider for the grown-ups...and lots of 20-somethings ooh-ing and ahh-ing over all the kids in costumes while silently either wishing for cuties of their own or getting a real-life reminder to pick up some birth-control before going out to party that evening. Saturday morning we met up with a friend and her six-month old son to take in the sights in downtown Harrisonburg. Koala Meredith and her bumble-bee friend had a great time hugging each other in their soft and furry costumes and playing with the crunchy leaves around Court Square.

Bonus treat: we also visited the pediatric opthamologist about a week ago. Mer's eyes are in pretty good shape. She has a slight misalignment, but nothing that is likely to affect her vision at this time. Regarding the color, however, he said that a higher than average number of children with Down syndrome have blue eyes. Basing our previous predictions on her eye-color off of the Punnett squares you may have practiced in high-school biology, which said, in short, that brown eyes are dominant, we figured her eyes would be changing over soon. However, it turns out that that extra chromosome does some funny things, including things that affect eye color. Our opthamologist seems to think it quite likely that her baby blues are here to stay! :-)

Monday, October 18, 2010

Pockets and Pocketbooks

It's amazing how much your pockets, and your purse, can reveal about your life. For example, at 4:30 today, at the height of their usefulness, my jean pockets contained: my cell phone and jump drive, a jumbo paperclip, a confiscated paperclip, doctor's orders to get Mer's blood drawn, a post-it with directions and phone number for the hospital where we had to get the blood work done, a baby size hair elastic and hair bow, and a confiscated silly band from school. Not bad, huh?
I've been using my pockets for storage more lately as I'm finding myself torn between bags. Pre-baby I carried a purse and over-the-shoulder work bag every day and that worked well. Work and my personal life were separate, yet I didn't have to sacrifice any of the essentials. Now, with a diaper bag in the picture, the purse has been relegated to a back shelf for special occasions. Even so, it seems like carrying a diaper bag, work bag, and pump into school every day would be overkill, so I'm trying to just switch the essentials (phone and wallet) from diaper bag to work bag as necessary...and often they just wind up in my pockets instead.
I feel like the bag I carry says a lot about the role I'm playing in my life. For example, this weekend, I had the opportunity to be footloose and fancy free with a small black and white clutch a girl-friend gave me as a bridesmaid gift. I felt sophisticated, trendy, and feminine carrying it...a nice break!
With conferences and assessments demanding a lot of time from work over the past two weeks, my work bag has been a constant commuting companion...and my mind has been as weighed down with it as my shoulder has been.
My new favorite bag to carry, however, is my diaper bag. It is one thing, that in preparing for my baby, I picked out and bought with very little input from others. It is my first Vera Bradley and it is organized with lots of baby paraphernalia that leaves me feeling in control and actively involved in being a mother. I loved carrying it everywhere I went this summer...around campus on my morning walk, to the grocery store on the weekend, and to Target every chance I got. I got a feeling of super-mom power when I was able to get the bag, Mer's car-seat, and our dog Ruffy into the car in a single trip when it was time to go pick Greg up in the evenings.
Since I went back to work, there are many changes in our life, and many times when I feel like I'm not as much of a mother as I'd like. Now that most of our weekday trips are limited to to and from work, my diaper bag doesn't always even make it into the car...and, silly as it seems, sometimes I get a little sad thinking about all that simple decision seems to say.

Tuesday, September 21, 2010

Showing off...

I know there are a lot of proud moms out there. And, I know that not everyone is totally into every little milestone that babies reach...even MY baby! (gasp!) However, I have to tell you that I feel a strong need to brag about my baby, show her cuteness to random strangers passing by, and let others soak up a little bit of her snuggli-ness. I may come off as a bit self-absorbed and pushy, but here is why...
I want to build up a "bank reserve of acceptance" of some sort in my heart for my daughter.
Even in this age of increased education about Down syndrome and ever-expanding opportunities for individuals with Down syndrome (and other intellectual disabilities), prejudice still exists. Begin just by considering the percentage of women who, when told that their unborn baby has Down syndrome, choose to abort the pregnancy--a number that I've read is around 90%. Further, consider how you might feel if time and attention was being "taken away" from your child at school because a child with a disability was in the classroom. I hope that you can see how your child might grown in their acceptance of others through this experience, but I imagine it might challenge you in some ways.
Anyway, I mention this because a friend recently shared with me some hurtful comments she overheard being made about her child. I know that in the future I will have my own batch of comments to face. And, I know that there will even be times when I won't be able to shield Meredith from these remarks...there will be some that she will hear and have to overcome on her own.
But...she's so perfect! She is so beautiful! She is making wonderful progress! I imagine that, at this point, unless we've shared with you that she has Down syndrome or you frequently work with children with disabilities, you probably wouldn't even know. So, right now, please indulge me. Listen to me talk about all the little stepping stones we pass along--rolling over, laughing, and maybe even starting food soon! Let me enjoy the random strangers in Target who stop me and say, "Oh, she has such gorgeous hair!" And help us build our "reserves" so that when the difficult times come, we have a cushion of positivity to help us bounce back.

Monday, September 6, 2010

What is love?

WHAT IS LOVE?
Oh baby don't hurt me. Don't hurt me, no more.
WHAT IS LOVE?

Sorry...just had to get that little lyrical break out of my system. :-)
Now, more seriously...
Love has been on my mind a lot lately. I recently had a good friend ask me what I thought love meant, and I have a bridesmaid's dress hanging in my closet for a wedding in October. So, I've been thinking a lot about my relationship with my husband, what our love is, and how incredibly lucky I am.
So, I think that love often gets mixed up with a whole lot of other things, especially lust and romance. You've all heard the lecture given to teenagers about love vs. lust, so there's no need to repeat that. But, I think romance is sneakier, and sometimes it sweeps people off their feet and gets mistaken for love. Chocolate, roses, chocolate roses...that stuff is all wonderful, but it's romance...the glitzy make-up the love wears when you just meet someone or when you're dating. Romance is important and there are days when love should wear that make-up. But I think love is more of a "I just rolled out of bed on Saturday morning" kind of thing. It's not always something you want to share with the public, but it is a simple thing to treasure, and a blessing to be grateful for just the same.
When I think about my marriage with my husband, there are a couple of key phrases that seem to sum it all up for us. This is our love:

"Nobody has more fun than us!" Love is making the monotonous fun. It is those silly little spontaneous moments, on the way back from the grocery store or while painting the living room, that build your relationship. They are inside jokes and plans gone awry. Try explaining these moments to anyone, or even trying to recall one to share with a friend, and you'll be stuck. But, they are money in the bank of your relationship.

"Honey, troubles!" My sister just reminded me of this one this weekend. Last spring, when my hormones were ALL out of wack due to pregnancy, there was this one night where the toilet got clogged. I waited and then gave it the ever-optimistic second flush, hoping that just a little more power would suck everything down. Of course, it didn't, and the water started rising and spilling out over the toilet. This is when I yelled the only thing that came to my mind: "Honey, troubles!" And of course, my hubby came running. I started mopping things up, only to knock over the shelf behind the toilet. The adventure finally ended with glass blobs, that had been sitting on a shelf, splattering all over the bathroom, on to the lid of the toilet (where you can still see the scrapes), and on to the floor. My point of all this, however, is that there will be rough times. And there will be times when it seems like it's just one rough thing after another. However, by calling on each other, and teaming up, you might be able to get through your adventure with a minimal number of tears.

"We make a good team." I feel like we've been practicing this phrase a lot lately, as new parents. In fact, I had thought that it was a relatively new phase of our relationship. But, then I remembered that this is actually how we got together. We started dating while teaming up as RAs to organize activities while in college. One of us had the big idea, the other ironed out the details. One did posters and publicity, the other got the money and bought supplies. We have just taken these practices and expanded them to meet the needs of our relationship. In a relationship, you really have to be able to share things with your partner...the silly little thoughts inside your head, the great big worries in your heart, and even the chores around the house. You have to be willing to let yourself go a little bit and know that your partner will be there to catch you. Often, this is harder than being there to do the catching. But, in being vulnerable, you learn to become stronger together.

So, dear friends, in your relationship, know that there will be moments when you will scream, "Honey, troubles." However, if you work together, and celebrate the fact that you "make a good team", hopefully you'll have many, many moments where you find yourself thinking, "Nobody has more fun that us!"

Tuesday, August 31, 2010

It is TOO SOON to think about kindergarten...

So, I'm having an internal conflict about a student in my class. This child has been a slight challenge for the past week and a half, and it's not his fault. He has some special needs which are being addressed by an IEP right away and his mother is advocating for him to attend a special program in the district, which, I think, can meet his needs better than I can. But I struggle because I wonder if my daughter will be in his shoes in a few years.
One of our major wishes for Mer right now is to be included in traditional classes as much as possible. Of course, we have very little to base these wishes and hopes on, other than being fairly strong believers in the idea that EVERYONE in a class benefits from the diversity that public education offers. We have no idea what her academic and behavioral strengths will be...and so I need to keep that in mind before I borrow worry. But that's easier said than done...
IEP meetings these days fill me with questions, more personal than professional. I start thinking about Mer. I wonder if she will be able to keep up with her peers behaviorally, not to mention academically. I wonder what services she'll be eligible for. I wonder if we will be able to successfully advocate for an instructional assistant for her and if that would be enough of a support to make her successful in a traditional kindergarten placement.
I also wonder how much of a PITA (pain in the @$$) parent I'm about to become...
I already find myself speaking up more in meetings about students than I have in the past. I worry more about whether parents are understanding all of the information that is being shared with them and if they know what options might be available for their child. I imagine myself sitting in "that chair" at a meeting in the not too distant future, having professionals share their assessments of my child with me, sharing information I already am aware of, but that is still not easy to hear. I hear the "discussion" I fear we will have, pushing for my daughter to receive instruction in the classroom, with her peers, differentiated to meet her needs.
I know we will ask a lot her teachers and the staff at whatever school she may attend in the future. How do I ask this of them, though, when I don't know that I am equipped to handle the child that is in my class now?

Thursday, August 26, 2010

Sweet surprises...

I got such a nice surprise today when I walked into the little storage closet where I pump--another mom who also uses that room, had left me a card, congratulating me on (almost!) finishing my first week as a working mom and teacher. And it was just the little boost that I needed!
Wednesday was a rough day. It began with some crazy dreams the night before which made me feel like I was always running late picking up Mer from daycare and enhanced the feeling that I'm not getting to spend enough time with her in the evenings. I then had a rough day keeping up with my kiddos, felt incredibly behind in planning and unavailable to meet with my teammates, and capped it all off by yelling at my students in the hallway while trying to get them on to the bus IN FRONT OF one of their parents.
Elgh.
I was at such a place that when my husband called an suggested we go to a wine-tasting in the evening, I burst into tears instead of responding with a more typical "Cheers!"
So, today was better. I kept my voice down to a dull roar during bus dismissal. I have a planning meeting scheduled with some of my team at starbucks for tomorrow. I got a good-morning-hang-in-there hug from a co-worker. I got the aforementioned card. And, I even left work on time to pick up Mer.
But what topped it all off was that MY BABY LAUGHED this afternoon! Really truly giggled---several times---all because of her mommy's kisses!
These are the small miracles in life and the way God (or the diety of your choice) supports you when you need it the most. I am grateful!

Sunday, August 22, 2010

Movin' on Up...

The great clothes switch--completed!
So, it's only the second time we've had to do this, but I have had such mixed emotions each time. Today I moved Mer's 0-3 month clothes out of her dresser and put in her 3-6 month clothes.
On one hand, this is very exciting! At 4 1/2 months, Mer is starting to fit into the next size of clothing, which really isn't that far behind schedule, especially since she took so long to start gaining weight originally. She also has some REALLY cute and summery clothes at the 3-6 months size that I am anxious for her to be able to wear while the weather is still good.
On the other hand, I'm a bit sad. My little girl is growing up and getting bigger every day and this is just more proof of that. She's holding her head up longer and longer and getting more and more stable sitting with support. She's chatting away and smiling a great big smile when she sees her mom and dad. I can't believe my little baby is learning and doing so much! Sometimes I want to rush her toward milestones and push her into learning new skills. But she will never be a newborn, snuggled sound asleep in my arms, again. This makes me realize how important it is to enjoy every day and every stage.
Tomorrow marks the first day of school and I know that there are lots of parents in our community who are going through the same emotional battle. Their kiddos are getting ready to go to kindergarten, and they are filled with a combination of pride and wistfulness. This must be a constant battle in parenthood...always proud of your child for their accomplishments, successes, and forward growth...always wishing you could hold them again like you did the day they were born. For the first time, I think I am beginning to understand...

Thursday, August 5, 2010

A Red Rubber Ball

Today was our first PT appointment, with C, who we met two weeks ago for the PT assessment. The assessment showed that Mer, who was then about 3 1/2 months old, was doing gross-motor skills at about a 2 month old level. Based on that assessment, we have been working especially hard on her head control and on reaching for things above her chest while she's laying flat on her back...and I think it showed today.
It took Mer a little while to get warmed up and focused as she was very interested in checking out this new person in her house. Then, she did slowly start reaching for toys dangling up above her though and did pretty well. (We knew she could--she's been reaching for her feet like crazy lately and loves some new jingly dangles that hang from her play-gym.) This is such a simple looking skill, but its apparently quite difficult because she has to overcome the force of gravity to lift her arms up off the ground.
We also worked on the beginning steps of rolling over from back to belly. C is really good at explaining how we're going to build up to these major skills from some basic foundations. First we learned how to encourage Mer to turn her head to the side to look at a toy. Then, while she's looking in that direction, we can choose to support either her hip or her shoulder and turn it in that direction. If the toy or object she's looking at is motivating to her, such as a mirror, then she will probably bring the other body part in that direction so that she can reach the object. By rotating which body part we support, she will strengthen them both and eventually be able to to roll on to her side on her own.
The red rubber ball that C brought with her was definitely the highlight of the visit though. C showed us how to put Mer on her belly on the ball. We can help her prop herself up and lift her head (like she does on her belly on the floor). Then, we can slowly move the ball from side to side or back to front. We'll know that she is working because her body is staying fairly well balanced, compensating for the motion of the ball, and not just sliding off.
One of the interesting things about having a specialist to work with your child is, well, exactly that. We have someone we can, and I guess should, consult with on the progress Meredith is making and the best way to continue to encourage her. This also can sometimes seem like someone you need to check with before you do something new...like asking your parents' permission to have a cookie. For example, we are SO excited about the little steps Mer is making toward sitting up, with support. We would love to let her spend some time in the Bumbo chair. However, when we asked last week, C encouraged us to wait a little bit until she is bigger and has more head control. This isn't to say that we haven't experimented a little on our own, but we felt a little naughty about it...kinda like stealing a cookie from the jar! Don't tell! :-)
The comforting thing that C reiterated to us today is the ABILITY that children with Down syndrome have. Even if she were not receiving physical therapy, Meredith would eventually learn to sit up and crawl and walk, just like typically developing children. However, therapy will not only help her learn these skills a little faster, but it should also help avoid bad habits that might let her accomplish these tasks but wouldn't strengthen and develop her muscles as she should. For example, she might learn to roll over by reaching for her feet and using the weight of her body to flip onto her side. However, this wouldn't strengthen her abdominal and hip muscles like she would otherwise...and we want to have those muscles strong so that she can use them for other skills in the future.
So, now we will have some fun playing ball this week and working on rolling to the side...and we'll try to take a picture of Meredith exercising on the ball and get it up here soon!

Tuesday, August 3, 2010

A Crazy Week

Well, it's August, and that officially means that the start of the school year is right around the corner. I've enjoyed my nice extra-long maternity leave (thank you summer vacation!) but now I'm face-to-face with going back to work full time and sending Mer to daycare. But before we get to that, we have an echo-cardiogram, a 4 month well-baby visit, our first physical therapy session and genetic counseling to get through.
Today was the echo-cardiogram, which went well. The doctor essentially told us he doesn't want to see us again--her heart is fine. We are lucky--about 50% of children with Down syndrome have heart issues, but, despite a calcium deposit in her heart that was spotted prenatally at her 20 week ultrasound, everything is fine now!
A more fun visit was her 4-month well-baby visit. It has become clear, through Mer's frequent weight-checks at the office, that she is one of the nurses' favorite patients--and who could blame them?! The staff at our doctor's office ooh's and awww's over Meredith every time she comes in. And, just as importantly, they've held their breaths with me every time we've put her on the scale over the past few months and cheered with every ounce she's gained. (More about that another night.) But today she checked in at 10 lbs 8 oz (a significant gain over last week) and 23 1/2 inches long. This puts her at about the 50th percentile for weight and above the 75th percentile for length. If you're looking this and thinking this sounds small for those percentiles, you're right...children with Down syndrome have a different growth chart that they get tracked on, as they probably will grow a little slower and ultimately be a little smaller than a typically developing child. (The average adult height for a woman with Down syndrome is under 5-foot tall.) The doctor is also fairly impressed with how active and squirmy Mer is--she loves the crinkly paper on the examining tables and wrinkles it all up as she moves about. Of course, there were immunizations to be given at the end, but Meredith took them like a pro and only cried for a minute and has been fine the rest of the evening. What a champ!
PT starts on Thursday and we can't wait!
In the meantime, school duties start to call--we're gathering a group of student to go see a play on Saturday (a rounding experience for them and extra pay for me!). Also, it's time to start planning for the first few weeks of school with a new teacher on my team. As long as Mer is allowed to tag along, getting ready for back to school isn't so bad...I'm lucky to love my job. We'll handle separation anxiety next week...