Myles Turns Four!

Happy Birthday Myles-Man! Four years ago today you made me a mama and taught me what it truly means to unconditionally love another. Your early days wrought with medical concerns seem like a lifetime ago and I often need to remind myself of how hard you have worked to be the little boy you are today. You are a fighter, a "soldier" as your name means, and we are proud of you.

For those that think all people with Down syndrome are easygoing, compliant, and always happy...well, they haven't met you little stinker! It's true you understand love, acceptance, and compassion beyond your years, but you are also stubborn and persistent (kind of like your daddy!). We butt heads over miscommunications and disagree about who should be in control, but even in these frustrating moments I find myself appreciating your sometimes hard-headed personality. You stick up for yourself and find creative ways to communicate your wants, needs, and feelings.

Your sister and soon-to-be little brother are so lucky to have you to look up to. You are an amazing big brother and I know you will always be looking out for them. You let Sydney have her way when something is not important to you, but negotiate with her when it is. You take turns and include her in all of your play. In the mornings you are so excited to see Sydney that you very often make your way to her room and wake her up well before she is ready. Anytime you hear her crying on the monitor you sign "baby cry" and say "me help" running toward the stairs to get her from her crib.

You are definitely our early riser, typically awake by 5:15 in the morning (this is killing your parents by the way). You don't need much time to adjust to the day and start your shenanigans first thing in the morning. The other week you were up before the sun as usual, so I decided to take an early morning shower. Daddy was awake with you in our bed when you made a dash for the kitchen. By the time he got there a mere few minutes later you had climbed onto the counter, dumped three remotes into a vase of water and flowers, and had stuck four knives in the toaster! (Daddy didn't tell me about the knives until later that day, smart choice Daddy.) This constant activity of yours keeps us going all day long and leaves me exhausted each night. You don't actually do many things to intentionally be "naughty," but you are busy, busy, busy, and still learning to control your impulses. I laugh when we go to friend's houses and they tell me there is nothing you can harm or get into when they see how closely I follow you, HA! I must not have shared with them the time about a month ago when you managed to throw about a dozen toys onto the roof when I was cleaning the windows with the screens off. I only turned my head for a minute! You are sneaky.

Your speech is coming along, and although I know I always mention it is slow progress, you are working very hard. You have several single words, and just this summer have started to try to combine words. You have said, "Where are you, Daddy?" "I did it." and "I got you." Often these phrases are only understood by those who know you best, and I'm sure you are saying a lot more that I cannot make out yet. I'm confident that someday we will look back at videos of you learning to talk and hear clearly what you were trying to say because of how proficient your speech will become. At least this is the goal we're all striving for. Your struggle with speech is the hardest thing for me right now and my greatest desire is for you to be able to express yourself in a way that everyone can understand. I see how frustrating it is for you, and in turn it is very frustrating and sad for me. We have good days and harder days, but your persistence keeps us motivated to stay patient and work hard for you.

I'm looking forward to what is already your fifth year of life and am so blessed to be your mama. Don't let anybody underestimate you little boy, you have amazing things to offer this world.

Splish Splash Birthday Bash

This past weekend we celebrated the kids' birthdays with a pool party! Despite some clouds and a few raindrops, the kids had fun swimming while the weather held out, and a good time eating a picnic dinner and cupcakes while playing inside after the rain came. We were able to use the pool and clubhouse in my parent's neighborhood where our family thoroughly enjoys swimming in the summer. A handful of our little friends and their parents joined us for the afternoon, and we are grateful for their presence in the celebration of our precious kiddos. I had fun planning the party with both Gilby and my mom, which turned out pretty cute, especially considering we didn't even decide to have a party until about 2 weeks before. Some photos from our day...

We continued the celebration the following day by opening family gifts. Neither kid quite understands the concept of their birthday yet, but they sure understand presents! Sydney of course got a couple of new babies, and I now have to read her nightly stories with 5 babies on my lap instead of the usual 2. The one she's holding in our family picture above she calls "yellow baby." I have no idea why. Myles is loving all of his new toys, especially his tool box, and little Toy Story and Sesame Street figurines. For a long while now he has been really into little pretend people and loves to move them from place to place and pretend play with them, so a whole new set of characters was in order.

Happy birthday sweet kiddos! You are loved.

Washington DC

Gilby and I spent this past weekend in Washington DC for the National Down Syndrome Congress' Annual Convention. Although we were both there for work, and spent most of the weekend in conference activities, we did sneak away for a bit of sight seeing.

After arriving Thursday afternoon we took a short subway ride to the Smithsonian and walked around most of the major monuments and memorials on the National Mall. Despite sweating so much (!) in the hot, humid weather, it was really fun to actually take a leisurely stroll with my husband and be able to take in the sights without constantly managing kids. We made our way past the White House and to Old Ebbit Grill, which had been recommended to us by a few people. After a long, but yummy dinner that didn't end until about 10:30, we realized it was pouring rain outside. Earlier I had been so proud of myself having actually taken the time to look at the weather and pack an umbrella for the trip, but I guess it wasn't so smart to leave it in the hotel room! We ran the few blocks back to the metro station and took a very wet trip back to the hotel.

Friday we actually slept in a bit (it's all relative when you have a kiddo that is almost always up by 5:15 AM!), had breakfast a few blocks from our hotel, and walked around the neighborhoods some before I spent the afternoon and evening in a meeting. Gilby took advantage of his free time and took a run around town to see more of the sights.

The rest of the weekend was pretty much spent at the conference, which was equally as fun, educational, and inspirational. We went last year as well, and it was just as great this year to hear all of the talks from the self advocates (adults with Down syndrome), and connect with other parents and professionals.

A HUGE thank you to my parents for staying with the kids over the weekend. It was an amazing break for Gilby and I to have a few days away and come back refreshed to care for our busy toddlers. The kids had lots of fun with Grandma and Grandpa, who took them to gym class, farmer's market, the park, and the swimming pool. When we got home Sunday night both kids started running around crazy doing somersaults and a "happy dance" as Sydney called it after Gilby suggested the name for their wildness. It's great to be missed...

Sydney Turns Two!

Happy second birthday sweet Sydney Belle! Mommy and Daddy are so sorry we are not at home to celebrate with you today, but know that you are going to have a lot of fun with Grandma, Grandpa, and Myles.

It’s hard to believe it has already been two years since your birth. You truly are growing up so fast. You are an independent, strong willed, compassionate little girl with a zest for life. You are so smart and very often catch me off guard with the things you can do, say, and understand with what seems like no instruction. You are protective of your big brother and balance well your desire to look up to and learn from him, while at the same time watching out for him. You spend more time with Myles than anyone else, and if ever separated, you are constantly asking where he is.

Your goofy personality has us laughing on a daily basis, which I’m pretty sure is your intent. You have always been a “carrier,” often having no less than five random items in your hands. Lately you will request your favorite items to carry...remotes, hair bows, keys, books, small toys, blankets, babies....but then say “TWO!” “Two bows please” is a common request, but not to wear in your hair, just to carry. At bedtime you run around the house gathering the items you like to sleep with and we end up putting you to bed with two blankets, three or so babies, 5 books, and probably a hair bow. The funniest thing to me is that each morning you remember everything you had the night before. Like the other day, I came into your room after you had fallen asleep to retrieve the cup of water you wanted to hold (“no, me hold it”) and the next morning the first thing you said was “where water doe?” (go).

Bedtime is one of my favorite times of day (and not just because it means we made it through another day!). Daddy usually puts Myles to bed while you and I head to your room to read “two books” (meaning anything more than one). As I’m nearing the end of our last book you will always request that we “wock” (rock). I usually say we can rock for one minute, but it always ends up longer than that as your body sinks deeper into mine and I’m reminded of how little you still are. After we start rocking you will only speak in a whisper. You usually ask me a few questions, which I also answer in a whisper, but are often content just to sit in silence.

You’ve always had a liking for your babies, but recently you will take care of them throughout the day, telling me “baby nap” and running to lay baby down and cover her (whole face and body) with a blanket. You push your babies in the stroller, carry them in the car seat, feed them, have them sit on the “potty,” and can sometimes even be heard saying “baby naughty.” I’m still not sure what kind of trouble your babies are getting into.

You have a very loving side and constantly ask to be held. “Up, up, up,” is an incessant request of yours closely followed by “yap” (lap). You can be very needy for attention one minute and playing totally independently the next. It’s hard for you when Mama leaves in the morning on my work days. A few weeks ago on my way out the door you were crying a bit, which isn’t unusual, and looked up at me with your big blue eyes and said, “Mama, no work.” It was so sweet I just about quit my job on the spot. Just the other day as I was leaving you were contentedly reading books on the couch waiting for Myles and Daddy to get ready. I said my goodbyes and gave you a quick kiss, and as I was on my way down the hallway, I heard your little voice, “Mama? Tiss mama?” Not fully understanding at first, you repeated, “Tiss?” and puckered up your lips. I happily came back for a second kiss goodbye.

We love you, Baby Girl, and are proud of the little person you are. Have a fabulous second birthday.

My Gym

For the past couple of months, the kids have been taking a class at My Gym. They have had a lot of fun and get super excited when we tell them it's time to go to "the gym." The hour long class starts with circle time, followed by free play for the majority of the class with different special activities each week, and ends with another circle time. 

Myles likes almost all of the activities, but his favorite thing is the ball pit. He loves to stand on the edge and jump in over and over. He thinks it's hilarious to bury himself or Sydney and then pop out. Sydney loves the trampoline and would spend the whole time on there if we didn't redirect her to other things. It's funny, I thought Sydney would be a circle time rockstar, but she is one of the worst! It's not that she doesn't understand what's going on, or can't do the activities, she just chooses not to. She'll sit with us and at least doesn't try to run away anymore, but she does not get excited about the songs, stretches, games...nothing. To be fair to her, she is one of the youngest in the class, and just has a strong little personality. She does, however, know exactly when it's almost time to get stamps on her hands (at the end of class) and runs to be the first.

Myles on the other hand is great at circle time and has gotten so much better each class. He has some practice with this from already being in school, but we are so impressed with how he has learned to follow along with what the teacher is asking the class to do. If we do this again, he'll move on to an independent class with no parent participation. We did the class with our friends and their son, so it's been a fun way to see them, and to spend time with our little family!

One Proud Mama

Myles had his first swimming lesson tonight and I am on cloud nine with pride. I had wanted to get both Sydney and Myles in a family swimming class this summer, but the one I was looking at was full for both sessions. The next option for Myles was a class with his same age peers where parents did not have to participate. We decided to give it a try with the thought that either Gilby or I could be with Myles during each class as we thought he would most likely need more support than the teacher would be able to give.

We went tonight with the plan that I would swim with Sydney in the free play area and Gilby would be in the water with Myles. When Myles and the other five kids in the class sat along the edge of the pool, Gilby backed up and made an on-the-spot decision just to see how he would do alone. He did GREAT! The only time Gilby spoke up was at the very beginning when each kid was telling the teacher his/her name. Myles cannot yet say his name, so Gilby chimed in from behind, but otherwise Myles was all on his own. He paid attention when the other kids were introducing themselves, followed all of the teacher's directions, stayed on task, tried all of the skills, never once attempted to run away, and had a lot of fun. He would occasionally stand up and look around for me or Gilby, shouting "Mama, Dada," but when he saw one of us we would just wave and motion for him to sit back down, which he did each time. After the class I introduced myself to his teacher, and asked how she thought Myles did. She was so positive about his participation and said she saw no reason based on this first class that we would need to provide extra support. I am so proud of him.

Raising a child with Down syndrome has many unique challenges, one of them being the balance between advocating for and providing opportunities of full inclusion with his same age peers, while at the same time wanting to protect him should he not be able to successfully participate at their level. Gilby and I support full inclusion in all areas of life as a philosophy, but putting it into practice can sometimes be scary...more for me than for Myles. We're only 4 years into this journey as his parents and I know there are many, many more learning experiences to come, but tonight something small, but significant happened. No extra supports, no therapists, no special education teacher, no written plans or goals, no parent by his side, nothing different than any of the other kids, and he did great.

Tiny Town

Yesterday, my mom, Gilby, and I took the kids to Tiny Town in Morrison, which is exactly what it sounds like, a miniature town geared toward kids. They have a train ride, miniature town to walk through, and a playground. We had a good time.

But, before I write more about our day trip and post a bunch of pictures of our smiling family, I feel inclined to share that although genuine, these smiles and the fun family things I write about only show part of our life. One of the things I struggle with since social networking has become so popular, is the ability it gives people to publicly share all the great things going on in life without acknowledging the struggles. I read a quote recently that stated,

The reason we struggle with insecurity is because we compare our behind-the-scenes with everyone else's highlight reel. -Steve Furtick

Our family does have a lot of fun, and we are really proud of our kids and the people they are becoming, but we have bad moments, bad days, bad weeks...just like everyone else. I yell at my kids and regret it later, Gilby and I bicker, some days the TV runs longer than it should, Sydney and Myles throw tantrums, hit each other, fight over toys, and sometimes I feel completely inadequate as a wife and mother. But, I intend for this blog to serve as a scrapbook for my family to look back on, and typically people don't write about the most recent fight they had with their spouse, or post pictures of their kids throwing tantrums, and I don't intend to either. But know that it happens.

Whew, now that I got that off my chest...

We left the house yesterday a little later than planned, made a quick stop at the Golden Farmer's Market (one of our favorite places to get summer produce!), and headed to Tiny Town. A mere 25 minutes later we arrived. Gilby looked over at me with a bit (or a lot) of skepticism, and I have to admit it didn't look that great. But, we headed in and after the kids had some lunch they perked up, started to run from building to building, and had a lot of fun. We spent a good amount of time at the park, walked back through the miniature town, and rounded out our trip with the 9-minute train ride (my favorite part!). 

Fourth of July

Happy Independence Day! We had a fun 4th of July as a family this year, the first time Gilby hasn't been on a mission trip since before Myles was born!

We walked to the park in the morning to let the kids and dog run off some energy. We stopped for lunch and ice cream on the way home and both kids fell asleep, Sydney with ice cream still in hand!

In the afternoon we went to our good friends the Murray's house for dinner and fireworks. It was such a gorgeous Colorado night, so we spent most of the time in the backyard chatting while the kids ran around. Gilby brought supplies for everyone to make and flavor their own homemade ice cream in a bag. An old trick from his camp leader days, it was fun!

Sydney watched the fireworks with Daddy while Myles and I stayed inside, he was too scared this year. This morning at breakfast Sydney was still talking about watching the "stars with Daddy." When I asked her if she was talking about fireworks, she said "Yep, fireworks. Tary!" (scary) and covered her eyes. Guess she was a little scared too!

Myles and Sydney

Myles will be 4 at the end of this month and any traces of baby in him are gone. He has turned into a sweet, strong-willed yet easygoing little boy. He finished his first year of official preschool and loved riding the bus each day. He is well liked by his teachers, therapists, and classmates. He didn't quite make the progress we were hoping for, but we're making some changes to his schooling for the fall in an attempt to help him be more successful. He can be very defiant, which is extremely frustrating, although I am glad he sticks up for himself. He works hard when he wants to, and shuts down when he doesn't.

Myles is making steady developmental gains, and excels in anything physical. He loves to go to the park where climbing is his favorite thing. Gilby is really excited to see Myles' natural ability and enjoyment in climbing as this is a passion of his that has been on the back burner since having kids. Hopefully he'll be back at it soon with Myles by his side. Myles also recently learned to jump, which we have been working on for almost 2 years. He is now jumping off everything! The couch, beds, chairs, on trampolines, into the pool, just up and down on the ground...anywhere he can! It's probably a bit dangerous, especially when his little sister follows suit, but seeing the joy and pride he has in new skills makes it hard to put limitations on him.

Myles still struggles with speech, and his progress is slow, especially compared to how fast he picks other skills up. We work weekly with the speech therapist that he has had since he was one-year-old and just this summer we have seen some big gains. Things that others probably wouldn't even notice, but huge stuff for us.

Myles is a busy kid who refuses to nap for me even when he's exhausted. We can struggle with communication and both end up frustrated. He needs constant supervision as he is still pretty unpredictable in his behavior and awareness of safety, which wears me out by the end of the day. But he is a gentle and protective big brother, sweet snuggler, gives full body hugs, and works so hard to accomplish even the simplest of skills. We love our Myles-Man and wouldn't change who he is for the world.

Sydney will be 2 in a few short weeks and truly is growing up so fast. She is talking like crazy and repeats almost everything we say. My favorite is when we tell her something and she repeats the last few words back to us in the form of a question, which is pretty much always. She asks "Why?" many, many times a day and has been for months. We answer her question, which then she follows up with, "Why?" She can count to ten, which often comes out 1,2,3,4,3,6,7,8,9,7. She's also working on her colors, shapes, and letters. Sydney sings/hums a lot, especially in her car seat, or when she's about to fall asleep. The words to her songs are usually family members "Daaadddddyy, Myyyyllles, Mooommmmyy, Naaammmaa, Daaammmpaa" in a sing-songy voice. The other day I heard her saying to one of her babies, "One more cookie, no, no, no, one cookie," after we had told her the night before she could only have one cookie. She truly is a sweet little girl...

But, there is another side to Sydney. The persistent, fiery, bossy side. Around new people she is shy and not many get to see how strong her personality truly is. I love that she is confident and hope to continue to foster that as she grows older, but as someone recently said to me, "Now that's a girl who knows her mind, which is really good. I can see where it would be tough during the twos though." Ha! She's not quite two and it is already proving to be tough at times. There are certain things I want to give her decision making over and don't so much care about, like the fact that she refuses to wear anything in her hair, and won't ever let me put it up, or her preferences about which clothes and shoes she wears. But other things we sometimes struggle over, like bedtime is at 7:30, not 10:30. 

Sydney adores her big brother and they for the most part play really well together. They love to chase each other around the house, jump on the beds, wrestle around on the floor, and work together well. We have a mini trampoline that they take turns on, Sydney of course deciding whose turn it is. She will declare, "Me turn!" and Myles will sit and wait until she says, "Myles turn!" They look after each other and it fills my heart with joy to see such a strong foundation built in what will hopefully be a lifelong friendship.

Father's Day

Happy Belated Father's Day to a great Daddy and a pretty fun Grandpa too! We started Father's Day trying to get breakfast in bed to Daddy, who got up before it was finished. We went to church with Grandpa, Daddy had a softball game, and we finished the day grilling out. I'm so thankful for my husband and his commitment to both me and our children. He's such a hands-on daddy involved in every aspect of parenting, and quick to get down on the floor to play with the kids. My own dad has turned into a really great grandpa and the kids' faces light up when we get to go see Grandpa, or "Dampa" as Sydney would say.

Baby #3

Baby Gilbert #3 is due on October 28, 2012, making me 23 weeks pregnant already. This pregnancy is going by so quickly, which is probably a combination of the demands of our two little ones, working, trying to sell a house, and everything else that keeps us busy. So far everything is going great, although my body is making it clear that 3 pregnancies in 4 years is a lot. I have had back pain since early on and just an overall achiness. My belly is bigger this time around compared to the last two, but thankfully my overall weight gain is about the same. It's as if the ligaments in my abdomen have just decided to give up. I do enjoy pregnancy for the most part, and still the third time around find myself in awe of what the human body can do. There's a chance this is our last child, so I am trying to make the most of it and savor each tiny kick I feel inside.

It's a boy! When we found out a couple of weeks ago that we are having a boy I was really surprised. Gilby and I have both thought from the beginning that we were having a girl, but the night before my ultrasound I was asking the kids, who don't really have any idea what's going on, if they thought the baby was a boy or girl. They kept saying "boy" (Myles with sign and Sydney with her words), which made me begin to doubt my intuition. We're excited to have another little boy, and I joke that Sydney's personality is so dominant that she needs two brothers to balance her out! 

I am having another ultrasound in a few weeks to double check that everything is going as well as we think. I have been with the same OB/midwife office with all three kids, and have had the same ultrasound tech with each. She is the one who first detected Myles' heart defect and led us down the road to ultimately find out prenatally that he had Down syndrome. She's very hyper-vigilant when it comes to my care, which I appreciate, but also has its pros and cons. Regardless, I will be excited to see our little boy again soon!