The Future

This article came out last spring, yet I didn't read it until about a month ago. I immediately started this post, but it's taken me forever to get all of my thoughts out..... Head's up: they are still jumbled!

As with anything in the medical field, new drugs, new technologies, and new studies are continually affecting life as we know it. Sometimes it's for the better, and sometimes, not so much. A new drug, RG1662, has been found to improve memory in mice, which in turn allows for improvements in their ability to learn and retain new knowledge. Scientist and doctors hope that clinical trials on adults with Down syndrome will provide the same results.

This sounds like great news, as improved learning and thinking can only improve overall cognitive functioning. However, no change comes without consequences. In a perfect world, improvements in medicine and technology offer only positives to the individuals who are affected by them, but how often is that the case? Many times side affects come into play. With this particular drug, there have already been tests on humans which resulted in no side affects. But sometimes those side affects are not as cut and dry as symptoms like headaches or decreased appetite. Sometimes the side affects are behavioral. Sometimes the consequences are changes that can't be undone.

Don't get me wrong, this could be really, really great. If this drug helps people with Down syndrome integrate into society more readily so that 'typical' people can be touched by their awesomeness, rock on. In addition, if this drug gives adults with bad stereotypes and questionable judgement a better feeling about those with Down syndrome in general, therefore increasing the chance that they or someone they know will choose to NOT terminate a pregnancy suspected to produce a baby with Down syndrome, resulting in an increased amount of awesome Rubys in the world...double bonus.

But I have to think about the 'what if'. My main concern with any of this is how will it affect Ruby. Even at her young age, she spends so much time intently studying those around her, especially those she loves. And she gives kisses so freely and lights up at the mere chance of a snuggle or hug. I have to think that's because her love is totally unfiltered, even more so than my other babies' love was at this age. I know with them, that love has remained awesome and 'more' than most adults I know, but it has slightly changed and become more guarded, less 'free'. Many things point to Ruby's love not changing in that way; she will likely love freely longer than her siblings. What if the improved cognitive ability she gains from this drug or another like it causes her to see the world differently? What if her new thinking leads her to the same slightly jaded view of expressing love that most 'typical' people have? Not trying to perpetuate the stereotype that all people with Down syndrome are happy and love to give hugs, but most people would agree that, in general, the Rubys of the world are a loving bunch. How sad would it be do compromise that amazing quality?

So here I sit, on the fence. Excited about advances, but scared about how far their effects will reach. Pandora's Box....

Maddux and Flat Stanley

Just before the holiday break we got an email from Maddux's teacher. Seeing an email from her teacher didn't raise any red flags immediately because Maddux's teacher often checks in with us about various things via email; it's one of the many things I love about her. Once I read the email though, I have to admit that my instinct was to chuckle rather than get mad...that girl....

...for our reading assignment, the kids were to pick books to read that are on their level, yet still challenging....She chose a Flat Stanley book. We did the same thing before she started reading and I felt the book would be okay for her to try and read independently. When she went to fill out the story elements for the book, I was amazed! The vocabulary and spelling were not what I usually see from Maddux. Come to find out…. She copied the summary on the back......When I asked her about it, she said she had trouble with the book and could not remember what happened or she did not understand.....Of course I will not force her to read a book that she does not comprehend, but I also want her to persevere and build that reading stamina. I want her to learn that if she starts something she needs to finish it, even if it is challenging. With that being said, I am going to send the book home with her to read with you guys......I will also send home a story map for Maddux to complete when you guys are done.
 
When Maddux got home I had a serious talk with her about this and explained the concept of plagiarism to her; my choice was to assume that she was ignorant to the concept and meant no ill-will. We then talked about her consequence, given by her teacher: she was to read the whole book and complete the homework for it over the break. Maddux didn't like that, but I reminded her that had she done what the teacher asked, she would have completed it in class over the last week or so instead of on her time off from school.

While Maddux has shown a lot of progress with her reading, she definitely gets distracted easily while around others. If she's in her room reading books, I watch her read one completely and then move onto another, never breaking her focus, but when she's in the classroom full of other kids, I know she doesn't quite know how to 'tune out'. And she is perfectly capable of reading most anything she wants, she will pretend to struggle sometimes if she doesn't feel up to it. Too bad Mommy's on to her.....

Let's All Go To The Movies

With two weeks off from school, and a few visits from Grandmas (to help after Lehr's surgery), I thought the holiday break would be a good time to steal away with the two older kids without Ruby. Don't get me wrong: that girl is a rock star and has yet to limit our ability to go to the park, the river, even the movies. But with her nap schedule falling more solidly into place (and there being only two of those each day), I thought it would be fun for Eli and Maddux to hang out, schedule free.

A few months ago when I took the kids (all three) to see "Planes", we saw a preview for an upcoming Disney movie: "Frozen". They asked me right then and there if we could see it at Christmas. So today found the two 'big' kids and I at the theater! What a fun movie; Eli and Maddux LOVED it. (So did I!)

As with most outings with the kids, funny things were said and realizations were made. I think I noticed them more because I was less distracted without Ruby.

• Eli saw some random preview over the summer and commented that he thought the actor that played some part was the same one from another animated movie we saw, just with his hair cut. Kinda funny, since he wasn't saying that the voice was the same, but the actual person (animated) on the screen. When Frozen started, Eli leaned over and said, "I think that's the same actress as in Rapunzel, just with shorter hair." Smart boy, as the two movies do have the same drawing style for the faces, but once again, I was reminded of my little boy's innocence.
• We had to park rather far away due to the large number of people who had the same idea as we did for the day after Christmas. As we were walking (and walking and walking!) to the ticket counter, Maddux chatted along the way but stopped when we got within throwing distance. "Mommy, I'm going to look to see if I know anyone here." That sounds about right because Maddux is *slightly* social and does tend to know a lot of people. Then wihtout missing a beat she said, "Oh, HEY ADDISON!" Yup....of course she saw a friend right away.
•  If you've see Frozen, you know there is a scene at the end that hints at the main character's death. This storyline plays out for about 1 1/2-2 minutes. Just long enough for Maddux to totally tear up and lean on my shoulder. When the character starts to 'melt' and come back to life, I watched Maddux wipe away her tears (many, many tears) and smile. Love love love that sweet girl.
• This one is unrelated to the movie, but it was awesome and I don't think I blogged about it yet. A long while back we were having a conversation about horses and unicorns (and maybe some other horse-ish animals). While we talked, I made some comment about unicorns being horses, but with a horn. Maddux insisted they were not the same at all, horn or no horn. We went around and around about it, but in the end Maddux's defense was that they are different because 'horseys are giddy-up' and unicorns aren't. I guess that's that!

Christmas 2013

Lehr had surgery two days before Christmas this year, so our holiday break didn't look quite the same as years past. No Christmas Eve service and no family bikes or hikes, but we still had a great time. One of the biggest highlights for me, as always, was the kids' gifts to each other. As usual, they picked out great gifts that they knew would be well received: Eli got Maddux a bow and arrow and Maddux got Eli a basketball. The older kids both picked out clothes for Ruby, which was odd but completely their choice, and Ruby got them each a framed picture for their rooms.

We did the Jesus stocking a little differently this year. Instead of me collecting all of the ways we've served in the name of Jesus this year and going through the items on Christmas day, I had the kids work with me leading up to Christmas. First, they helped me make a list of things we've done to be the hands and feet of Jesus. Then on another day, they wrote and drew on a piece of paper for each item. We never actually went through it on Christmas because I felt the prep time had been more impactful. Lehr and I planned to also make our annual Samaritan's Purse or Buy Less to Save More purchases online with the kids on Christmas Day this year, but between Lehr's knee and me feeding Ruby, we ran out of time.

While we weren't sure if it would be the case or not, we did have the magic of Santa for another year. The kids wrote him notes and left him cookies, and Maddux even left him a chalkboard note in the backyard. She seemed more skeptical than Eli this year, asking several times, "Is he really real?" Ruby woke up at 1AM on Christmas and when I walked to her room, I noticed Eli's bed was empty. Immediately I heard scampering up the steps and Eli's sheepish face appeared. I told him to go back to bed, but didn't follow up with him until later the next night. He said he was just so excited and he had to look. I asked him what he'd seen and he detailed the scene left for the kids by Santa. I do love the innocence in that boy's heart.

The kids had a great day, playing with the gifts they'd given each other and their two other homerun gifts: a skateboard for Eli and roller skates for Maddux. We played a few family games with Mom-Mom and finished the night with our traditional spaghetti and meatballs and birthday cake for Jesus.

Traditions

The kids and I have a bucket list every holiday season.

We don't call it that, nor do we physically make a list, but in the months of November and December we always:

• fill some Operation Christmas Child boxes
• make chocolate covered pretzels for teachers, bus drivers, my OBC instructors, and a few others
• watch typical Christmas specials (Charlie Brown, Christmas Carol, Prep and Landing, etc.)
• complete a wish list of holiday gifts for a child with an terminal illness (and their family)
• address holiday cards with decorated envelopes
• cut down our own tree
• prepare cards or notes for our Jesus stocking
  
• house decoration
• drive around and look at lights at least 3x
• make gingerbread house and cookies
• read our many Christmas books, again and again
• write notes to Santa on Christmas Eve
• make homemade spaghetti sauce, meatballs  and pasta for Christmas dinner
• put Jesus in the manger on Christmas morning
• purchase items for others on Samaritan's Purse or Spend Less to Give More
• make a birthday cake for Jesus for Christmas dessert

We love going through each of these items, and the kids always remind me of ones we have yet to do. This year we missed a few, but kept the tradition going for the majority. I love love love that both Eli and Maddux already know the tradition of how we do Christmas in our house, and I love love love that they look forward to it each season.

Gifts From The Heart

As we are in the season of Christmas, gifts are on everyone's mind. Because Maddux is who she is, she thinks at least about giving gifts to others as she does about receiving. This, I love.

When it came time for me to make my annual chocolate covered pretzels for my instructors, Maddux and Eli always ask to give some to their teachers as well. This year I asked if they could think of at least one other staff at school to give them to, preferably someone who may not have a specific class that would be showering them with gifts. As expected, Eli didn't think of anyone, but Maddux immediately asked to bring some to 'the lady in the lunch room that always helps me'. This could mean any number of people, as I have to imagine that Maddux receives help many times each day. But Mad Dog did have one specific woman in mind: the cafeteria staff worker who consistently helps my girl with opening her milk or her orange or her cheese stick or anything else packed in her lunch. Love it. Of course we made them for her and Maddux delivered the next day.

While Maddux made a card for her teacher and we sent in pretzels, the day before the holiday party found Maddux scurrying around for another present for her beloved teacher. She took one of the plastic bags i used for the pretzels and found a variety of gems from around our house that Ms. W may like. The items that made the cut were (overly) scented lotion (only used once by Maddux), two unsharpened pencils, an eraser, and a small page of stickers. While inwardly I cringed at the gift, especially the (overly) scented lotion, it warmed my heart to see Maddux thinking so intentionally about what her teacher may like or need.

When Maddux got home from school I asked if she'd given the gift, and if Ms. W had liked it. Of course, she did. When I touched base with her teacher letter, she sent me this awesome note:
Ah it was absolutely precious. Maddux is one of the most precious children that I have ever met. She may drive me up the wall at times, But I love her more and more each time. She has a beautiful personality and an even bigger and more beautiful heart. Not to mention she is as cute as a button. You and your husband have done an amazing job with her. I wish you all a very merry Christmas. Enjoy your Jesus cake and spaghetti and meatballs :) Maddux wrote a beautiful and very structured story of your special family tradition. I was a very proud teacher!

Therapy Update

Ruby has officially entered the phase of NOT liking therapy. She does great with me or Lehr, but when the Babies Can't Wait physical therapist comes, she has started crying close to the whole time. Not fun. Especially for Mommy, who knows that Ruby is not a fussy baby at all, and she really doesn't have 'fits' outside of the therapist's time.

The main focus in therapy right now is encouraging Ruby to bear weight on her straightened arms, like in an up-dog position. She has been up at 90-degrees on tummy time for months, but only on her elbows. And she often shifts her weight to use one straightened arm, but she rests on her elbow with the other arm. This will not help her crawl or cruise, so we are working on it. But she doesn't love it, nor does it come naturally, so much much much is to be done.

The specific exercises we do daily are:

• her chest over my lower leg with arms underneath her. (I'm bearing most of her weight on my leg, but it allows her to be in the correct position and get used to it.)
• side sitting on the balance ball. (I sit her flat on the ball and then shift it to one side, which throws her hips to one side and her body to the other, she then has to lean on the 'other' arm. She does not like this one.)
• supported sitting on the ground. (We sit Ruby with a couch or other supported surface behind her and she must use her arms to 'catch' herself as she tips forward or to the side. She does ok with this going forward, but still doesn't catch herself to the side.)
• ball rolling. (This is the most fun and she usually 'gets it' towards the end. I put Ruby on her stomach on the ball and roll it away from me. I roll her until her head is just inches from the ground. The goal is to trigger her protection instinct, as in she should throw her hands out to touch the ground before her head. She does not do this initially, but after I show her a few times, she will do it on her own.)

We also have a fun little arm 'splint' that the therapist left with us. It gets wrapped around one arm and it prevents her from bending at the elbow. We alternate which side it's on so she gets equal opportunity to have to weight bear on straight arm(s). The problem with this is Ruby will just lie flat down (no arms) and just raise her head to play (like a superman position). That girl's crafty!

Basketball

We've talked about some of the perks of an 'off-season' that we've realized in our family, but now Eli is enjoying a different kind of perk: a new sport. By the time we are done with baseball most Novembers, we are so ready for a breather that basketball is not even up for discussion. This year, however, we decided to let Eli give it a shot.

The church up the street has a great league that only has one practice and one game/week AND the schedule is totally laid out at the beginning of the season. Eli's never played formally, but he does a lot of one-on-one (with next to no rules) and shooting in the neighborhood.

As expected, Eli is not in line to be the team's center, but he can dribble and shoot at least as well as all of the other boys. Practice has been great for him, teaching him some of the positions and strategies....and he always looks forward to the next practice. This afternoon was the first game. Eli was point guard 3/4 of the time and did fairly well. The sense of urgency of the game took him a bit by surprise the first time down the court, and he had the ball taken from him by a few more seasoned players, but he loved every second of it.

RSV

Wow. What a fun title!

Ruby has been so healthy since she was born. No colds, no sniffles...nothing. Unfortunately last week that changed. On my way to bootcamp Monday morning, I heard Ruby cough on the monitor and it did not sound good. That morning I called the nurse and walked through what was happening, but based on no fever, no runny nose, no anything other than a few random coughs (that sounded HORRIBLE!), she told me to wait it out and not bring her in yet. Reluctantly I agreed, but Tuesday morning I was at the doctor's office before they opened. Even though she didn't have any big symptoms, those coughs were just not 'right'.

Ruby and I got in to see the doctor pretty quickly; she checked her all over and asked me a bunch of questions. Nothing set off any alarms with her, but she said they'd swab for RSV, just to be sure, and then send me on my way because Ruby was fine. As she walked out of the room, Ruby finally coughed and the doctor turned around immediately and came back in. She checked a few more things (still fine) and said that they'd swab, but it was likely RSV, based on the sound of that cough. Sure enough, the test came back positive.

Since this was our first experience with RSV, I read all kinds of things about it on my phone every time I sat down to feed Ruby. I kept watching for all kinds of other symptoms, totally aware that there was a possibility of Ruby's cough developing into bronchitis or pneumonia. Yikes. My biggest fear was her breathing and the possibility of us ending up in the hospital. My other big fear was an ear infection. With Ruby's ear canals being so small, the doctor cannot see her ear drum to see if it's inflamed or not. I'd asked the doctor a bunch of things about that, so I knew what to look/listen for, but at 11PM, your mind plays tricks on you. Lehr and I spent more time than we probably should have watching her breathe, watching her sleep, just watching her..... The doctor also told me that she would likely 'peak' around day five. We waited those five days, but her cough only got slightly worse; no other symptoms. After seven days her cough was significantly better and by Thanksgiving, there was no trace of it. Glad to have that behind us.

The Sweetest Cry

Ruby is crazy easy-going. She does not fuss often, unless she's absolutely exhausted, and she's only given really 'bad' cries a handful of times, most of which were when she got a scare. Tonight she was beyond exhausted, but gave me a few great laughs. We decided to push our luck and have Lehr hold her in a way that always makes her giggle so that I could get it on video. While that was not the footage I got, I still had to post this. Seriously...the lip at 0:22 is one we've seen just a few times, but it is adorable.

Roll, Ruby, Roll!

It's been a while since I've posted about Ruby's therapy. She is still rocking and rolling through one-on-one physical therapy once each week with the therapist from Babies Can't Wait, and we go to a group therapy at GiGi's Playhouse a few times each month. She has started to put lots of weight on her legs and feet through use of the exersaucer, and her favorite activity to do is to stand up when you're holding her. Ruby's core is crazy-strong; the therapist is always amazed at how she 'crunches' if/when she's on her back. And her head control is really improving constantly, especially with the increased amount of 'sitting' she's done in the bumbo in the last month.

Ruby has been rolling from her back to her stomach for a while now. She has always done better at that transition, rolling almost as soon as I put her down when I put her on her back. For a while it was almost like she got 'stuck' on her stomach, because she would fuss a little if she was on her stomach for too long sometimes. Just this week she started going back to her front-to-back motion though. The other night the kids and I watched her go back and forth no less than five times in the span of a few minutes. This girl is a rock star!

Gettin' Wiggy With It!

So I found an awesome hat for Ruby on etsy a few weeks ago.

This girl already looks like a real life doll, but this just makes it over the top.


Love that girl.

Operation Christmas child

We participate in Operation Christmas Child every year. Eli and Maddux have helped me fill shoebox sized totes every November for as long as they can remember. The past few years they have also helped me shop for the contents of the boxes. Unfortunately, with school and Ruby and, well, life taking up so much time, I had to shop on my own this year so that the time I had with the kids oculd be spent putting the boxes together. I had the kids divide up the contents of my Target bags and then pick the contents so that all boxes were even.

It should come as no surprise that Maddux wanted to add a personal touch to the boxes: she drew a picture and wrote 'I love you' for two of the boxes. But when I asked Eli if he could think of anything else a 5-10 year old boy would like in his box, he ran and found a handfull of brand new tennis balls. Then he disappeared upstairs and when he came back, he had for Lego action figures in his hands. He wanted to give each boy two figures so that they could play if they were by themselves. Be still my heart.

Food Drive

We are so glad that this has become at least an annual 'thing' for our family. This last weekend we held a food drive in our neighborhood for a local outreach program. Another family helped us with the manpower and we collected a LOT of bags of food.

The kids are always involved in this process with us, from stapling instructions on bags to passing bags out, door-to-door, to collecting the filled bags on the final day. Yes, there are always some groans along the way, but there are also some cool moments too.

This year was slightly more challenging because we had to figure Ruby's feeding schedule into our morning AND her location in the car. (The kids and Lehr always ride in the back of my Pilot and collect bags from there. We push the seats down so there is plenty of room; that would not leave a space for Ruby's seat.) She rode up front with me (in her seat) and she napped and ate perfectly. We collected the bags all morning and then drove them to our church where the program is setting up shop. The kids all unloaded the bags up the steps, up the elevator, and down a hall to the storage room. They were hard workers! We then came home for lunch and outside play (they earned it!) Another food drive success!

Tell Me About It

Best Buds

I mentioned before that we've had more family time this fall, in large part due to the lack of baseball. One thing that has developed in that time, related or not, is the relationship between Eli and Maddux. They get along, and they play well, and she adores him. But in the last few months, I've started to see him seek her company out more and more often. He asks her if she wants to play, instead of ALWAYS the other way around, and he has started to compliment and build her up while they are playing, which is a totally new thing for him.

Last week, the kids had Career Day at their school. One of the speakers in Eli's class worked for Home Depot and brought DIY boat kits for the kids to take home and make on their own, with nails and hammers and such. Eli asked the guy if he could have two so that he could bring one home for his sister to make also. Joy does not even begin to describe what I felt when I saw him asking her if she wanted to go outside and build a boat with him. He even got two hammers so they could work at the same time.

Gifts vs. Presents

It would be silly for me to recreate the wheel here for two reasons: #1 - I have no time (I still haven't blogged about things that happened almost a month ago!) and #2 - the mom/author of this post writes it way better than I ever could.

We plead with friends and family every year to scale waaaaay back on the actual gifts given to our kids. Not only are they typical privileged American kids who really don't NEED anything, but we don't want them to associate Christmas with presents, nor do we want them to associate some of the key people in their lives with 'stuff'. Instead, we love the idea of a well thought out gift; bonus points if it was handmade or it is the gift of time.

As I started talking to the kids about the holidays this week, we discussed gifts for Ruby. Of course both kids have a list of things they want to get her. Gold star for them because they talked about her and never once talked about what they want AND they both mentioned using their own money. Then we moved on to what we thought would be good gifts for other people in our lives....some random ideas got thrown around by the kids, none of them bad. I stressed to them the importance of putting some real thought into it, and reminded them that the gifts they make or spend time on are the ones their grandparents, friends, etc. will like best. Eli agreed, saying his favorite birthday gift was tickets to the Braves game with his dad. While that obviously cost money, the ticket was not what made it stick out in Eli's mind: the quality time with Lehr was key.

Hoping to continue this trend in our house and have it spread more through our family this year :)

Open Calendar

Since Eli turned four years old, we have only skipped one baseball season (the fall that found us in the middle of a renovation and partly out of our house until Thanksgiving). And while we love baseball, and we do, it is taxing on our calendar.

Every season comes and we sign Eli up again though. He loves it; he seriously comes home from practices and games and asks us to pitch to him in the yard, or throw the ball with him. This is after a minimum of 90-minutes spent at the ball park. (Games are closer to 2 1/2 hours between pre-game practice and game time.) And we do, not because he has the potential to be a player in the MLB one day but because he absolutely loves the game. And we do too. Lehr and I both love watching baseball, and Maddux has grown up at the ball-park; she had just turned 2 when Eli started playing and I have chased her all around that place during games and practices. It's just part of who we are. Even though Eli is on the field, it is a family activity that we do together. He knows we are there supporting him, Maddux interacts with him through the fence, we get some individual time with Maddux, etc. Also, we love the confidence it gives Eli. He is not (nor will he likely ever be) the biggest, or the fastest, or the best. But he loves baseball and we see cool changes in his 'game' every season. And even though he knows he's not the star player, he has success on the field or at bat each and every game, and I know that helps him balance out being a small boy in a big-boy school and league.

Fast forward to this summer; we were busy. Having another baby will do that to you! Between the addition of Ruby and some behavior issues with Eli that started to pop up more often last spring, we started toying with the idea of a season away from baseball. I really didn't want to do it, but trying to imagine getting all three kids to the field (plus snacks or meals), half of the time on my own (during the week, Lehr has to meet us at the field) was stressing me out. Then I'd also have to feed Ruby at the field many times. And Eli's behavior stuff that we were struggling with definitely escalated when he was tired; weeknight baseball games start at 5:30 or 7:30. That means the earliest Eli is in bed is 8PM. Difficult for our sleep-needing boy.

So August came and we did not attend the baseball evaluation. The first few weeks of practices came and our friends all went to the fields and we did not. I definitely second guessed myself a few times; I already missed it even before the games started!

Then I started hearing the calendar adds of our friends, the two-practice, two-game weeks. The rescheduled-for-rain nights. At that point I felt a little better because I knew how hard it was some nights just to get dinner on the table for three kids and that was without that extra 'schedule conflict'. But that was just about me; I still had some reservations because I wasn't sure if taking ball away for the season was having a positive impact on Eli (and Maddux).
Then I started noticing something. We were playing more family games. We were having whiffle ball and badminton tournaments in the backyard. We were able to run last minute errands one-on-one with kids after dinner. The kids had books read to them at bedtime EVERY night. Eli and Maddux were spending time together willingly, and being creative with their time.

 We were doing some family workouts and therapy for Eli. The kids would disappear for 30 minutes here or there and come back with random kid art or a random project started. And (the biggest) Eli was having many less meltdowns. His anger was waaaay more self-managed. And when he did start to blow up, he was able to get it under control more quickly. I realize that does not mean Eli was the problem and taking away baseball 'fixed' him; it is very likely a combination of Lehr and I being less rushed and stressed AND Eli being less rushed and stressed.

As with many things in life, while we were in the middle of the season of no-ball, I didn't notice much difference. But once I looked back over the last week, the last month, the last few months, I realize how many weekend pockets of time we had together as a family. How many bonfires with friends we had in the backyard. How many crafts and holiday foods the kids and I got to make together. All small things, but all so big in the grand scheme of things.

So we will likely join back into baseball in the spring. And I'm excited for it - REALLY excited. But having a no-ball season was a really really great thing for our family. It created just enough margin for us to really stop and pay attention to each other, to play after school most days, to have NOTHING on the calendar some Saturdays.... Even though we knew we were busy with the baseball schedule in our life, I don't think we realized HOW busy until we took it away.

Pipe Down!

So Ruby likes to make noise. Just for the sake of making noise. This is familiar territory as Maddux was the same at Ruby's age. Ruby's is less loud though...more of an 'exploration of vowels'. Lehr caught a few moments of it while I was sleeping off my surgery last weekend. (Yes, she's on a hardwood floor; no babies were harmed in the filming of this video.)

Halloween

In true present-day-Nicole fashion, we carved our pumpkins two days before Halloween. And we visited the Atlanta Botanical Garden's display of scarecrows (an annual tradition for the kids and I) on October 30. To say I'm running behind these days is an understatement.

Costumes, however, were done way in advance for once. Both kids had their entire costumes ready to go two weeks ago, in time for the Little 5 Points parade. So at least I wasn't running around this week doing THAT!

Eli and Maddux did a great job with their pumpkins this year. Yeah, we bought them at Publix less than a week before Halloween instead of visiting a pumpkin patch, but they didn't seem to mind. For several years now they've picked out the design for their own pumpkin, and last year Eli even helped carve his. This year I told them it was ALL them. They were pleasantly surprised that I'd let them cut their own jack-o-lantern, but the little 'carving knives' they sell around every corner are so kid-friendly it would be a crime to deprive them the joy of carving. Since I'm all about giving the kids the best possible experience, I also let them clean the seeds out of their pumpkins. They are LUCKY! The one thing I did was cut open the top with a real knife, but then it was all up to them. So they scraped and scooped and scraped some more. Maddux was a little hesitant to start, but she got over it really quickly. Eli ended up designing an 8-eyed spider face? and Maddux tried to duplicate a face she saw on a pre-made jack-o-lantern. Both kids did really well! Seriously way better than I expected and I'm so glad I had them do it all themselves because they turned out to be at least as capable as I am (if not more!). They gutted, cleaned, designed, drew, and cut everything on their own: NO help from me. Ruby hung out with us most of the time, just lying on the ground near the crime scene.

The scarecrow display was awesome, as usual. I'm always blown away by the creativity of some people!! The kids were extra excited to see the scarecrows this year because they helped create one. Some creative minds at church landed us a spot in the line-up, so Eli, Maddux and a handful of other kids got together for a Sunday afternoon about a month ago to construct Mr. Tumnus (Narnia). He turned out very cool and the kids were super psyched to see him at the gardens.

Halloween was on a Thursday this year, so the kids got to come home from school and pace around the house and yard for two hours before we could get started with our neighborhood festivities and trick-or-treating. Once Lehr got home, they were ready to go. We loaded Ruby up in the BOB and set off for the Halloween parade. Eli looked awesome in his Lincoln beard and top hat. Maddux looked, well, Maddux-like in her wings and pink tutu. And Ruby rocked the ladybug costume like no other. The kids meandered from friend to friend on the neighborhood walk down to the clubhouse. We all got a piece of pizza just before the costume contest started. Eli was eagerly anticipating this; he thought he had a real shot at winning. He ended up taking second place, which he was grinning ear to ear about (even though there was no prize).

And they're off: 6:15ish we left the pool to trick-or-treat home. Eli and Maddux did pretty well staying with us and using manners at each house. Our neighborhood has so many kids that the first dozen or so houses get absolutely mobbed once we all leave the clubhouse area. At one point Eli got really hot and wanted to take his beard off, but we convinced him to keep it on. He wasn't too focused on the candy this year, so he'd go to a few houses and then skip a few and walk with us. Maddux did the same, but it seemed like they never picked the same houses to skip. Ruby was a rockstar, watching, snoozing, and eating on our mile long walk back to the house. Never an upset peep came from her in the BOB or the bjorn.

Fancy Maddux

The kids' school holds an "I Love A Book" parade for the first graders on Halloween each year. Eli chose Mr. Popper's Penguins two years ago, and this year Maddux chose Fancy Nancy.

This seems like a no-brainer, as Maddux dresses like Fancy Nancy pretty much every day, but we actually struggled with her costume. She did a fantastic job drawing, coloring, and writing on her book ends (to be worn the day of the parade), but when it came to picking clothing and accessories, Maddux wanted to be a bit conservative. In fact, I remember a rather heated discussion between Maddux and Daddy regarding sunglasses: Maddux was dead-set against them. And her choices of clothing all blended together, much unlike her daily clothing choices. Go figure!

Halloween Traditions

We don't have many. Really just one that is out of the ordinary: the Litte 5 Points Halloween Parade. It is a bit more 'adult' than you might expect for something we would attend. Especially because we are so strict with TV and movies, but it's something we've done as a family every year since Eli was 1 year old. And (to date) the kids have never been scared by it!

This year was Ruby's first...no worries about her fear level yet; we'll check in again next year. The kids like to dress up for the parade now, and it's a good chance to test drive their costumes. Maddux was a pink butterfly-ish thing, Eli was Abe Lincoln (but we didn't get the beard to work for the parade), and Ruby was a ladybug. The kids had a blast and Ruby's checked off another first family tradition.

Thinking Back

I've been thinking a lot lately about when Ruby was born. The labor, the delivery, the hours after, and then the after-after.  So many emotions, so many frozen moments, so many realizations. One thing I keep coming back to, again and again, is our reaction. I don't have any regrets or bad feelings about our reaction, as I know our initial disbelief and grief is to be expected,  But I have been analyzing (or over-analyzing, as Lehr would say) it lately.

The more I think about it, I have come to realize that our reaction had everything to do with us and nothing to do with Ruby. I think this is something that would be true for any parent receiving unexpected news about their child. Even those that expect a boy and get a girl, or vice versa. The news is not necessarily bad, but when it goes against our expectations, we feel confused. As if we were somehow in control of the outcome.

To me it seems as though my expectation of what Ruby would or wouldn't be was a way of me saying "this is what my family should look like". I imagine God looking at me and shaking his head as He chuckles. Not In a spiteful way, as if to "show me " with His ultimate plan. Rather, in a loving way. Just as a parent would shake their head and chuckle when their child piled a plate full of cookies for dinner. That's the thing about God. Sometimes we may think He isn't giving us what we want. But what we, what I, need to remember is that He always gives us what we need. My family needed Ruby. I needed Ruby. I'm so glad He gave me what I needed!

My Precious Mad Dog

Oh that girl. Let me count the ways in which she rocks. I have been realizing more and more over the last few months how amazing that girl is. Even though I usually just comment on her 'crazy', her amazing spirit and helpful heart are definitely her biggest qualities.

A year or two back we received a book as a gift that was full of prayers sealed in tiny envelopes. We read it with the kids a few times, but honestly it has sat on the shelf for some time. Quite frankly, getting the prayers in and out of the envelopes is a tricky process and I ended up stressing out and pestering the kids more often then not during storytime. (Didn't want to rip the papers and ruin the book.) So much for fun story time, so away the book went.

About a week ago, said books surfaced again. Seemingly out of nowhere, it appeared at Maddux's bedtime.  Lehr read the book with her. On the last page is a slightly larger envelope and blank paper.  The page directed the reader to write a small prayer to God on there. We never got that far in the book when we used to read it.  But as Lehr got to that page and opened the envelope, he found that Maddux had been reading that book and wrote her own prayer. Amazing. And her prayer could not have been more encouraging. I love that with no direction, and not even during the holiday time of year, she thought to talk to God honestly about Christmas.

(Translation)
Thank You God,
I love the presents but I know that you are more important to me and I know your birthday is on that day.
Amen 

Perfect Gentleman

Yesterday Eli made my day. Maybe my week or month too. I already included this in my Honor post, but had to elaborate a little.

I woke up to feed Ruby at 7 and then went outside to workout when she was done. Just before I finished, Eli came out to say good morning...we chatted for a few minutes and asked if I would eat with him when I was done: "Mommy, can we sit and eat, just you and me?" I told him to let me shower first, but definitely; I would love to eat breakfast with him. On my way up to the shower he asked if I knew what cereal I wanted and I told him Cheerios. Never thought anything of it...

Fast forward fifteen minutes later when I come downstairs and Eli yells out, "Close your eyes, Mom!" I do so and he leads me to the table. I open my eyes and see a mug with cheerios and banana in it (my favorite combination and my boy knows that I eat cereal out of a mug), a bowl with cut up green apple, and some PB (two more of my faves). My jaw drops. He set up a little 'date' for us. The best part? He also had a little note next to my food that said, "I love you! Love, Eli"

For about ten minutes, Eli and I got to sit and chat about nothing. And he asked me how my breakfast was, and if I liked what he put out for me and it was perfection. He even got a little upset when Maddux came down about halfway through and tried to join us. Even though our date only lasted about ten minutes, you better believe I'll be holding on to that moment for a long time.

Honor

What an amazing morning. I got up with Ruby just before the rest of the family today. After I fed her, I left her in bed with Lehr and went out side to grab a quick workout. Just before I finished, Eli came outside with me. He wanted to eat cereal with me, just me. I told him I had to grab a quick shower first, but then I'd be right back downstairs.  He said, "what kind of cereal do you think you're going to have, Mommy?" I told him Cheerios and a banana, and then went upstairs. When I came back down, Eli told me to close my eyes and then he walked me to the table. Set out perfectly was a mug with Cheerios and milk, and an apple sliced with peanut butter, his mug and cereal, napkins, spoons, and a small little note that read "I love you mom ".  Insert my jaw hitting the floor. We proceeded to have a great little breakfast together for 10 minutes or so. Just me and my little man.

Fast forward an hour later when we get to church and the kids go into their worship set. As our first service of the month started, we quickly found out that the virtue for October is honor. It was quite easy to show kids examples of honor later that day. Eli's was a no-brainer. Maddux had a good one recently also. The day we returned home from the beach, she rushed upstairs and drew a great picture for the family we traveled with. She added some words to say thank you, and ask if we could deliver right a way. I asked her why she made them a thank you note, and she told me it was to thank them for sharing the trip/time with us.

My kids rock.

Beach Trip 2013

This year's trip was slightly different than ones in years past, in more ways than one. The first being that we had a not-yet-four month old with us. We went to the beach with Maddux when she was little too, but Eli was still little, so it didn't feel so foreign. These days, our kids are so self-sufficient when it comes to eating, sleeping, swimming, biking, etc.....going back to having to physically hold a child the whole time felt very new. That being said, Ruby was AWESOME....not fussy at all and even slept a full eleven hours one night!

Another new aspect of this trip was the family we went with. Eli's best friend, and a family that has become our good friends, traveled with us. They have three kids too. That's right, we had four adults and SIX kids, ages 8, 8, 6, 6, 3 and 4months for six days. Kelly (the other mom) and I discussed this at great length ahead of time and prepared ourselves for inevitable meltdowns and arguing and other typical kid stuff. We also tried to prepare ourselves to just let some stuff go (we are both a bit Type A when it comes to our kids). Maybe it was because we set the bar so low, but we were very pleasantly surprised at how well the week went! There were some meltdowns, and there was some disobedience, but all in all, everyone got along really well and was pretty well behaved!

One more new thing was the element of surprise. Our kids knew we were going to the beach, but the other family's kids did not. And NONE of them knew we'd be together. We have two other families we've traveled with in the past, but neither could make this trip. I told the kids that since the houses are so big and we usually share with 1-2 other families, we may be 'assigned' a sharing family this time. (I had them convinced that they don't rent out houses for just one family.) So we talked manners and whatnot beforehand. About ten minutes after we arrived, I called the kids downstairs because the other family had arrived and we needed to greet them. Talk about excitement! Their kids burst out of the car and Eli couldn't stop saying, "DREW!!" Good times.

The week was a possible wash as a hurricane was approaching the beach just as we were, but we were very blessed to only have one partially rainy day. The rest of the days were sunny and gorgeous! The older boys mostly did boogie boarding each day (lots of waves thanks to the hurricane), Maddux and Davis and Emmaline swam but also built many sand creations. Ruby slept and ate. She did get her toes wet several times, and she sat in the sand a lot also.

Awesome times at the beach, great company, and memories to last a lifetime....we had a great trip!

These Are The Days

I'm about to brag here. Not about my parenting, not about the kids, but about the experience we had today. I often blog about our crazy times and our not-so-good times; I'm very excited to blog about the good times also.

My main reason in posting this blog is to 'pay forward' family time ideas. When I am struggling with my parenting or in a rut with family stuff, I am often looking to other blogs for ideas or parenting gems. Not that I consider anything we did today a 'gem ', but hopefully it will give an idea to another family.

Today was the first day back to school after a week break. The kids woke up happy and gave Lehr minimal backtalk during their morning. It was National Walk To School Day. Lehr was a great sport and let them ride their bikes. (It should be said that I would not have let them do that, simply because I'm a stick in the mud.) Them riding their bikes meant that I would have to deal with the riding bikes home part on my own. I told the kids to ride the bus home and we would figure it out from there. They got off of the bus and Ruby and I were ready to go, stroller and all. I told them we would be walking to school and they would ride their bikes home. That would normally produce some groans: Neither one absolutely loves walking for the sake of walking. Not only did they not complain, but they both cheered.  

The walk and ride whore uneventful, except for Nagging Mom calling after them on their bikes to watch out and stop and stay to the side. Once home we started on homework. Some whining from Eli regarding one of his assignments, but all in all pretty uneventful. I even managed to feed Ruby, make dinner, put Ruby down for a nap, and still have food on the table when Lehr arrived. 

Dinner was one of my favorite dishes, but it's no one the kids consistently like. However, when I told them what we were having, more cheering. I had them both set the table and prayer cards.

Sidebar: I started prayer cards about a month ago. I made four cards out of foam paper, each with a letter on it spelling out ACTS (Adoration, Confession, Thanksgiving, Supplication). We each have one at our plate at dinner to indicate what part of the prayer is our 'part'. The kids have done really well with this. I first brought the ACTS prayer to them several years ago, but it fizzled out quickly. This time it stuck. 

I asked Eli to pass out the cards, which resulted in some complaints from Maddux over not getting the card she wanted. That resolves quickly and we went on to have a great dinner. We had our prayer and then ate dinner with both kids complimenting my cooking and talking voluntarily about their day. Then I brought up a few things I wanted to start with them surrounding dinner and they both were involved in the conversation AND excited. The first thing I told them I wanted to do is have one of them help me make a dinner from start to finish once/week. We talked about possible dinner ideas and they both got really excited. The second thing I want to start is a once a week family Bible study at dinner. I told them that we would take turns each week. When it is Eli's week, he chooses the story, he chooses the Bible (we have several), he chooses the presentation.... Same goes when it is Maddux's turn, or Lehr's turn, or my turn. They can make it as big or little as they want. Of course, they were talking props and all, because they have such amazing lessons at church. 

At this point, Maddux asked if we could read the family rules. (I ordered a large family plaque a few months ago that hangs in our eating area.) Not only did Maddux want to read them, but Eli did as well. What? Reading rules about obedience AND cooperation in doing so? Crazy.... Then we cleaned up dinner and even had time for a quick bike ride.

It may sound like a very normal, boring night, but for us it was epic. Yes, epic. We sometimes have one or two of the above 'events' happen in a night, but never all of them. NEVER. No major arguments. No bickering. No timeouts. Happy family conversation. Faithful plans. Joy and Happiness. Epic.

Superstar

Once again, I'm here to brag about Ruby and her amazingness.

Ruby's physical therapy is still going really well. She is sitting up (assisted) so much better, holding her neck VERY high for longer periods of time, rolling and rolling and rolling, and grabbing onto (and holding) beads and shirts/blankets constantly.

This week we introduced a new seat for Ruby. In the past, we've worked on her neck, back, and core muscles for sitting by having her straddle my leg and supporting her rib cage. Then I could place my fingers under her chin to assist her head control as needed (usually not until she fatigued). That was a big step for us, but now she is even stronger! Her therapist brought us a bumbo-ish seat that has a support/play-area that moves all around (very similar to an exercauser). We stuffed the seat a little to help make up for the gaps, added a stiff magazine behind her to allow for head support when she got tired and away we went! I keep that seat upstairs for her to play in and downstairs I keep her regular bumbo, with the tray, for her to hang out in while I cook. The combo of using those seats at least once a day (and we're talking about no more than 10 minutes at a time) has strengthened Ruby's midsection so much, in just a week!

One of Ruby's newest tricks is one she didn't even pick up in PT; she just came about it like any other baby would. Ruby is doing crunches! When I put her on any surface that is not 100% flat, she contracts her abdominals and pulls herself up, as if to sit up. Check out her moves!!

This morning Ruby's therapist (Sherri) was blown away by the progress Ruby had made in such a short time. We started working on a few more things (mostly supported knee sitting while leaning on a sturdy flat surface) because of how strong she has become. Sherri couldn't believe how well Ruby supported herself in this new position, without assistance, for such a long time. And her free play wiht her hands is comign along too - go pectoral muscles :)

What If We Knew...

Many people have asked me if we tested for Down syndrome before Ruby was born. We opted to not have any of the prenatal tests: I thought about doing the screening, but quickly realized that it was not totally accurate and we knew it wouldn't change the outcome anyway.

With Eli, we knew about his clubfeet at 20wks, and it helped us to research and prepare for doctors and casting. It was a huge blessing for us to know ahead of time so that we could hit the ground running with his treatment. Not that all clubfeet are the same, but the initial protocol for our chosen path of correction is pretty straight forward for all clubfeet. I am so thankful we did not know about Ruby's diagnosis ahead of time for the pretty much the same reason. Her diagnosis does not have a 'standard' treatment plan, nor does it have typical presentation. Had we known, we would not have chosen a different outcome for her, but the stress endured would have been bad for my pregnancy and all for naught, as we wouldn't have known what *exactly* we would be dealing with. We still don't. Just like with Eli and Maddux, we have to watch our kids develop, one milestone at a time. We know of things Ruby will likely struggle with, but there was nothing we could have done while she was in utero to help her during her first few years.

When we first found out about Ruby's extra chromosome, one of the main things that kept me strong, that kept me joyful, that kept me from giving in to the fear was having Ruby physically present with me. Her soft skin, her baby smell, her little fingers and toes, her big eyes....all of those things made it much easier to focus on the baby and not the diagnosis. Had we opted for prenatal testing to determine if she may have Down syndrome ahead of time, I think everything would have been so different, and not for the better. I think the diagnosis would have overshadowed the baby. I think we could have easily over worried, over stressed, over planned, over researched. All for scenarios that didn't end up applying to Ruby. I think I could have succumbed more to grieving for the baby I'd planned on having. I could have spent days, weeks, months disconnected from my kids and husband, struggling with fear and sadness...time wasted. (That is not to say I have not grieved, or struggled, but I think it has come and GONE in smaller chunks here and there because every time I hold Ruby, the joy outweighs everything.)

Something we were not afforded (outside of the first hour) but we tried to give to some friends and family was the opportunity to see Ruby via pictures and videos, or to meet Ruby and get to know her before knowing her diagnosis. Our intention with that was to establish a connection, a familiarity, a bond, without anything else getting in the way. And when I say 'anything else', I mean the baggage most of us have tied to so many medical conditions or diagnoses. I had it...I still have it. When I heard the words "Down syndrome" certain thing immediately popped into my head: physical characteristics, delays, handicaps. Because it is something that I had no prior personal connection to, stereotypes are all I had to base my reaction on. Without that prior experience, we are all guilty of that when we see or hear about a particular condition. I think it's why termination rates are so high in pregnancies where DS or other abnormalities are detected. Sky high, actually. I can't help but grieve for those parents because of the amazing children they are missing out on due to fear. Because of ignorance. While termination would not have been our choice, the fear and ignorance would have still been there. And they would have been a much bigger part of my reaction to Ruby had I known about her DS before she was born. They may have gotten in the way of me really seeing her when she was born. Of course, my 'vision' was still clouded in the hospital.....I still had many dark moments of fear and ignorance. But there is something about holding a tiny squirming ball of warmth that softens any news.

Thankfully, I've been able to learn more about Ruby AND her diagnosis one step at a time, all of the while holding my baby in my arms. Realizing, as I read about some possible outcomes, that she is Ruby above all else. Just as Eli's clubfeet are just one thing that makes him up, Ruby's DS is just one of the many things that make her who she is.