Johnny at 10 Months

Johnny,

Today you turn 10 months old and we simply cannot believe that you will be a whole year old in two months. The time has flown by and we can't help but relish in what an amazing little boy you are, the perfect addition to our family. We celebrated today by watching the Aggies BTHO Rice, with Johnny Football entertaining the Aggie fans and ticking everyone else off for part of the game, since he was suspended for part of it.

You are eating like a little champ, taking baby food with solids for two meals a day and snacking on puffs, yogurt melts, green beans, and gnawing on waffles and toast some too. The waffles and toast are great for oral development too. I love throwing food on your tray and watching you work to grab it and move it towards your mouth. Today I gave you a bite of cake which you seemed to be a little thrown off by, but I think you will learn to love cake (hopefully in the next two months). You take four bottles a day, from 6-7 ounces each. You prefer them cold and will actually get mad and refuse to drink them if they are anything above warmish. You generally take a short nap in the morning, a longer nap in the evening, and would like to be in bed between 7 and 7:30 every night to sleep for 12 hours.

You are enjoying playing a lot and easily move yourself from laying down to sitting up to look around and be a big boy! You like playing with light up, musical toys and grabbing for books the best. You always love to stand in your exersaucer and look around and all the action. You are moving more and more, getting close to making those first army crawl movements by reaching and stretching for toys as you pivot around. You are also building a lot of arm strength in hopes of being crawling soon. When we go out and about, you happily sit in your seat or in our arms and you are getting better about clinging onto us like a little koala. You love to see people and smile at most people you see. You still frequently say "mama mama" and "dada dada" along with a ton of other repeating sounds and Jennnifer Faulkner insists that you repeated "nononono" after I said it today. You understand the signs for more, food, and milk, but aren't doing them as much as I would like, although you have started moving your hands a little more if I ask you if you want more. You love being tickled, held upside down, and to have kisses everywhere. When I change your diaper, I will say "WooHoo! Peepee diaper!" and you get a big smile on your face. Then I will lightly bounce my head on your tummy and say "boop" over and over again until you laugh. I love your deep, slightly raspy laugh and voice, it makes me smile in amazement over having a little boy!

You had your first surgery yesterday and you are doing fantastic. I will post more about the surgery specifics another time, but you did fantastic and I couldn't be more proud of you and the way you handled it.

 We love taking you out places and you seem to be fairly flexible and agreeable to shift your naps or bedtime around and not being overly upset when your mealtimes get moved back a little bit. You are so laid back that having you, a third child, has hardly caused a hiccup in our schedules. You are easy going and happy to just be around other people which makes your presence in our life all the better!

We love you so much little Johnny. We find it funny that we ever worried about our lives with you and wondered how you would fit into our family. You are perfectly matched for us and we thank God for the chance to know you, be with you, and raise you.

Love always!

Mommy and Daddy

Schedule

We are very busy people and we like it that way. We love to be together and both get a little restless if we aren't out and about doing things. We relax as a family too, but we find a lot of time for running around and socializing as well. It works for us, we know it isn't for everyone. 

We frequently sit down to synch our calendars. It's one of my favorite things to do, especially when there is coffee or a beverage involved. Today we got that done and realized we have almost completely full weekends until next year. That means that besides church, we have at least one if not more big events going on each weekend. Technically the last three weekends of the year are not booked, but its the end of the year/Christmas, it's kind of a given!

My calendar, note taking, and memory is crucial to staying on top of things! The best thing I could have done was to color coordinate our calendar. We each have our own hi lighter color. I used to write things out in the color, but you can't do that when it is an event for two or more members of the family. Plus, I want to carry my calendar around with me, but leave my dorky, former teacher pencil case at home. So everything gets written on the calendar, then hi lighted with the appropriate colors for those  participating in the event, preferably with the "main person"'s color on top.  All that gets written, besides the event itself, is time (if that), address and detail go on the appropriate day in the back of the calendar book. I need to get better about taking notes and making lists in the pages of my calendar. 

This is pretty typical for us, this was this summer. I love our life, but I am thankful for the tools to keep it all together!

MacKenzie Prayers

I had to giggle at overhearing MacKenzie's prayers with Matt the other night. She said thank you for God and for Jesus, and prayed to play outside, for feathers because they are so soft and tickle-y, for ice cream, to sleep with their door open, and for hugs and kisses from Mommy and Daddy. It's so interesting to hear her honest and simple prayers.

Both girls like to sing "Jesus Loves Me" and the "God our Father" blessing at night. They sing the latter twice, the first go around ending with "all our men" instead of "amen".

Delays

This Sunday was a bit rough in terms of Ds. I told a friend it was a tough "Ds week". I know there will be ebbs and flows, ups and downs, happy times and hard times, and thankfully, the happy times and gladness far outweighs the struggles for our family.

We have been working really hard in OT to prepare Johnny for crawling. He is great at rolling around, going from laying down to sitting up, and pivoting on his tummy to get where he wants, but we want the crawling. Crawling is so important for activating different muscle groups and for triggering the brain to work in a coordinated left/right movement.

Thus, we work on getting him up into a crawling position, we build those arm muscles, activate core and trunk muscles, entertain him so he doesn't get bored, give him rest time, dangle toys for him to reach for, and practice, practice, practice for the one day when it all connects together and he takes that first little movement towards independent crawling. I love working with him, I love seeing him struggle. I love encouraging him and seeing his frustrated crying face melt away into a smile. I love watching the progression over days, turning things he couldn't do into things he does with ease. I love when he tests me, Matt, or our OT, trying to figure out how far we are going to push him that day. We work several times a day and I love that special, deliberate time with him. It is work though and we have to be diligent about it.

Which is why Sunday was a little rough. Johnny has several "buddies" in his nursery class that were born right around him. Two of his buddies are twin brothers born 3 days before he was. It has been fun to hear the nursery workers comparing the three boys, the twins having beat Johnny in size, unless you look at Johnny's big feet! Well the twins and one of the other kids have all started crawling and are beginning to pull up. Which means they get to move on to the next class at church. I am so proud of their accomplishments and that they are doing such a good job. But it is hard to have Johnny "left behind" for the first time. It is hard to think that we are really working on the crawling and other milestones and it will still take some time before he gets there. I am so thankful that he is healthy and happy, but at the same time, I can't help but want more for him. So I get a little sad, then try to refocus on what we have accomplished so far, what we are working towards, and how happy I am with my little guy. He makes me happy, he is happy, and what more could we ask for at the end of the day. We use that hope for accomplishment to drive us in our interactions with him and we encourage him each step along the way.

Sisters

The girls have been exceptionally funny in their relationship wise. We have entered the days of "No, sissy, leave me alone!l", "She's touching me!", "Don't hurt my mommy", "you have to share!!!", and one particularly bossy big sister. At dinner on Sunday, Mac informed us that she didnt love Keegan. Knowing better than to make a huge deal about it, I carefully inquired as to why. Mac made us both laugh by saying, in a very exasperated manner, "Because she is always talking, I don't want her talking all the time." We let that one slide, one because we were laughing too hard and two, because she doesn't stop talking most days when we are with her. Fast forward to Monday morning, when Mac told me, unprompted, how much she loved her sister and then pulled her into her lap and snuggled with her, stroking her hair. And fast forward to this morning when they played together at the CFA play are and were hugging and squealing with delight, playing slumber party. Kids are funny that way, I'm so glad they have one another!

Baking Gingerbread

I have a random memory of kid-dom that has been lingering with me for years. It had to have been the spring or summer entering my 6th grade year because I think the mix in the memory was from one of my mom's students. In it, my mom baked warm and delicious gingerbread on a rainy day. The memory has stayed with me in the way that memories do when they are movie like. Dark clouds, thunder rolling, sweet spices lingering in the air, and your mom making a special treat for you to share, what else could a director ask for? My mom baked, but this was different, random, and without a purpose. In that, it became all the more special. We didn't often have gingerbread (usually only at Souper Salad), so it was a special treat too.

This was the summer bucket list memory I wanted with my kids so I jumped at the chance to bake some gingerbread cake from scratch this afternoon as a light rain shower pushed through our area. The girls had a blast, helping me measure out and dump things into the mixing bowl, and smelling all the different spices that went into the cake. MacKenzie took one teeny lick of the batter and Keegan had to be peeled away from it, she enjoyed it so much. The cake was good and I would use the recipe again with some minor tweaks (a little less molasses, a touch more salt or butter). I love baking with my girls and the fact that it was waited for, but still rather spontaneous (lucky to have the ingredients on hand though) made it fun. I enjoyed sitting with them, watching the rain, and eating our cake together too.

It also helped get me further into my anticipation for fall and think a gingerbread and pumpkin cake would be amazing, as would a gingerbread and dark chocolate chip cake!

Tomorrow

Tonight I am thinking about all the teachers and other support staff at schools who are just as nervous, if not more so, than their students, wondering what tomorrow will hold. I think about the countless hours they spent planning, practicing, learning, decorating, and more preparing for their kids. I think about the money they have invested and the care they took to pick each item that hangs on their walls and is places on their shelves. I think about the care taken to choose their outfit and how each item was probably chosen with a purpose. The first day of school is an amazing day for students and teachers and I am praying for each educator this year to have a meaningful, purposeful, and positive impact on the lives they come in contact with. A majority of teachers are amazing people who want good things for their students. I was honored to be among their ranks for a time and wish them a fantastic first day and a remarkable year.

Learning How to be "the Mom"

One of the scariest things about receiving our prenatal diagnosis was the thought of how to interact with others, "outsiders" specifically. I was anxious about how to talk to people about my son and I still don't have all the answers figured out. Do I blurt it out, "This is Johnny and he has Down syndrome."? Do I wait for them to ask? Do I try to find a clever way to integrate it into our conversation?

I've tested it all out, except for the blurt it out way. It can be pretty awkward sometimes. There are times that strangers mention things that are Ds related and I feel that angry mama bear rile up inside me, defiant and protective, ready to rip their heads off until the (very small) calm part of me comes out and brushes off their comments that so far come from the form of ignorance that is truly not knowing what he has or what that means. There are times that people say or ask something specific about Ds and I have to trace in my head if I have told them or if it is obvious in the way he "looks" that day or if they know someone that may have informed them ahead of time.

It's challenging and I don't know the answers yet.

Sometimes you can tell that Johnny has Ds and other times you can't. Even our OT mentioned that sometimes his features aren't very prominent. Sometimes I am thankful for the "stereotypical" look because it automatically gives people a framework to set expectations in. Other times, I am grateful for his unique take on "Ds features" because it may mean that more people give him chances that they may not have otherwise. More often than not, strangers comment on how cute Johnny is or how amazing his eyes are or how neat his hair is which makes this mama very happy.

I find it harder too, to talk to outsiders that don't know us personally. I can talk to strangers who are raising a child with special needs and feel connected. I can talk to people that know and love us personally and feel connected. But it is becoming increasingly difficult to talk to people who don't know us and aren't a member of "the community" about Johnny and Down syndrome in general. It is making me increasingly frustrated to hear stereotypes come out of people's mouths about Down syndrome because I am working so very hard to learn about my son and what his needs are and what he may need from me. And I know it is well meaning and comes from a sincere place, but sometimes it doesn't hit happy parts of my heart. To some degree, it hurts, to hear people reducing my son to an anecdote. And regardless of how they mean it, that is how it feels. Especially when they don't know us or they don't have first hand experience in day to day life with a kid with special needs. I find myself getting impatient with "God gave you a special gift", "They are such happy people", "They will teach you something great", and other comments that I have probably said myself in the past. The truth is, we try to view each of our children this way, so it feels like people are just compensating. So I nod and smile and try to be gracious, all the while looking for ways out of the conversation.

I don't know what to "tell" people to say though. I think it helps when people make more specific comments about Johnny because it helps emphasize that, although his diagnosis is the same as 400,000 other Americans, he is still unique and how that extra chromosome will manifest itself has yet to be determined. I like when people comment about him making a connection with people around him ("Look at him looking up at you!" or "Oh, he is giving me such a great smile.") because those personal connections are and will be so valuable to us along the way. Even asking specific questions about his diagnosis or his progress is helpful because it helps us stretch our brains and share some of the vast multitudes of knowledge that we have gained over the past year. I don't think I would mind if a stranger came up to me and asked if he has Down syndrome, but I can see how hard that would be in case you were wrong. But if someone felt fairly certain or overheard me talking about it, I wouldn't mind the segue into asking questions.

I've been thinking a lot about what happens when the comments turn from sheer not knowing ignorance into discriminatory and hurtful ignorance. I've been thinking about what stance to take and how to handle the type of situation that, more likely than not, will happen at some point. I've been thinking about how to manage my pain and hurt while protecting my children and formulating some sort of educated retort to put someone in their place. I definitely don't have the answers to that. For now, I just implore our community of those that love us and care about us to not allow that to happen to others around them. I charge our friends and family with standing up with the families of kids with special needs so that their parents can protect their pride and their children's feelings without worrying about the jerks out there. I know that we have a strong community to fall back on and rely on for strength and comfort in those times. But others may not have that, and it is important.

I am still learning a lot about what it means to be Johnny's mom, but I am pretty sure I will never have it all figured out. Instead, I am hoping to become more comfortable with not knowing and becoming secure in the learner that I am.

 Very proud of himself, he is consistently going from laying down to sitting up

Pumping update almost 10 months in...

After the past few months of pumping, I have gotten very discouraged. My supply has had major issues taking leaping on a cliff declines in the amount available to pump in the later part of my cycle and taking a week to recover which meant lots of pumping with little yield. After trying a few "helpers" to no avail, I decided to finish out the cycle month to see what happened. I could have tried more herbal help or other milk supply boosters, but you have to balance out how much money and time you are investing into something that may not work. Plus, at that time we were 9 months in, I had done an amazing job so far and Johnny was tolerating formula well.

So we haven't given up on pumping entirely. But after another round of supply issues and me crying as I pumped for my 5th 1 hour session that day with barely a yield, I made the decision to cut down again. I am now only pumping once in the morning and once in the evening and I will be honest, it has been hard to adjust to. I feel anxious if I am out and about in the afternoon when a large amount of pumping would take place. If I am at home I find myself wandering over to my pump and starting to sit down figuring that I am due for another session. It has become such a habit for me that it is hard to break. My body has adjusted fine, it's just my mentality. I am happy with my decision though. I am happy for the extra time in my schedule and not being locked down to the house even more. I am getting four ounces at each session which is perfectly fine with me at this point. Johnny is getting 3 ounces or so of formula at each feeding with the four ounces being fresh pumped or frozen pumped milk. I find it interesting how the "profile" of my milk has changed, the pump parts don't need a "deep cleaning" as often because the milk fat content is definitely less over the past two months.

I have been so blessed by my friends. So far we have not needed to purchase any formula due to donations of sample cans given to us by friends. We have received a lot and have coupons as well for any purchases that need to be made. Additionally, this week brought us a donation of pumped, frozen milk from a friend who is having to clean her diet for her newborn son. If you had asked me several years ago if I would have ever given someone else's milk to my kid I would have scrunched up my nose, shook my head, and told you that you were crazy. Once I began donating though, I realized how grateful I was to be able to give my milk away and now, I get to receive a little bit of that back. Which means so much to me since it wasn't my decision not to "feed him directly from the tap" and it means extra nutrients and vitamins for him (especially since it is newbie milk).

My hope (as it has always been) is that he will receive some breast milk until a year. I will do my part to make that happen and I am so proud of our work up until this point. My advice to anyone wanting to exclusively pump is to go in knowing that it is really hard, to make sure you get even more rest than a breastfeeding mother, and to cut yourself some slack from time to time. If I could do it all over again, I would have kept an early pump to build up my stock (and probably wouldn't have donated the big batch that I did before I had issues). I also would have gotten a little bit of formula (enfamil has these fantastic to-go packets that are nice for emergencies) to have on hand in the diaper bag for times when we were out and about but had to cut things short to get back home to pump. There were a lot of times that we were having fun with the kids but I was tied to getting back home for pumping. On that note, invest in a lighter adapter for your pump so you can take it with you on longer trips.

I am here for my limited advice to give anyone who wants to undertake exclusive pumping or who needs breastfeeding advice. It takes help sometimes because it can be hard to get the hang of, but I promise, if it is important to you, it is so worth it.

He is so worth it!

Easy and Normal

Today was a day that you can just relish in. I got a handful of things done around the house, a bit of work done, some time spent with friends, time spent with kids, a great OT session, and I am about to snuggle up with my hubby and watch one of our favorite shows, Top Gear.

Nothing was remarkable, in fact our day was pretty ordinary, but that is good. We need ordinary and normalcy. Not every day can be an adventure, not every day can be a fairy tale.

I love our family and our lives so much. We are so blessed in countless ways. And it isn't even the material things we have, although we are grateful for those, it's just the way things work in our lives. The way that my girls have been asking to sleep with the door open at night, which I thought would be a pain, but has gone really well and has led to them crawling into bed with me at 7:30 for morning snuggles. The way that, as we play, Keegan stops, cradles my face in her hands, and says, "Does that make you happy?" and then gives me a kiss. The way that Johnny giggles at us with contentment and will also give us looks like, "You expect me to do what?!?" The way that MacKenzie says Lady and the Cramp instead of Lady and the Tramp. The way that Keegan laughs maliciously like Stitch from Lilo and Stitch. The way MacKenzie narrates every single part of her favorite movies as she watches them. The way that MacKenzie and Keegan run to meet Matt at the door every day. The way that we all sit to a meal together to enjoy one another's company. The way Matt patiently helps the girls do little chores, or builds things, or reads to them, answering each of their endless questions. The way Mattie and I get time every night after the kids go to bed that doesn't involve endless kid questions.

I have so much to make me happy. And I am. So what more could I ask for? While our journey continues on, our lives will change, but I am sure relishing in small things that make us happy will be found every step along the way.

Educational woes

I so fret about the kids and their educational needs. I see so many advantages and struggles to each and every educational system. I have a vast amount of knowledge about the education system, educational theory, and have several years of experience on the front lines. I also know my kids, in and out, backwards and forwards, and I know what is best for them. I have researched through several ideas, reflected and prayed over each of their needs, and discussed it with multiple friends and family members, most importantly, Matt. I am very deliberate in my decision making process, I really think these things through. Thus, it is infuriating to me that several people I have encountered lately, in the educational systems and programs that we are checking out for MacKenzie make a blanket assessment of her based on age alone without asking me my thoughts and reservations about their (or my own) desired placement for her or without speaking a single word to her themselves. I am so frustrated with the walls that are being put up and the doors that are being shut without even having a ten minute conversation with myself or with my child.

In all fairness, there has been an attempt at some middle ground being made on some people's parts, but the language that was used did not feel conducive to setting my child up for success. I know the key words, I sat in enough meetings with parents to know what certain phrases and terminology means. And everything that was said may have been well meaning, but I want someone who is excited about challenging my child and being ok if she needs a boost or even if she doesn't succeed 100% of the time. Instead of starting her at a lower level and seeing if she needs to be moved up, we really wanted to throw her in ahead and see what happens.

So I refuse to let a door shut before my daughter has the chance to walk through it. I will do the same for Keegan and you better believe that I will do the same for Johnny. I will find a system that is willing to work with my child for the person that she is. It may be hard work, but that is why I am her mom. That is why I am her mom. So that I can figure out what her needs are and find a way to meet them. This year, her schooling may look very different from what I thought it would be, but I am going to do what I can to lift her and her sister up where they need and want to be. I am excited to see what is in store for us and hopefully a new program awaits our exploring this weekend.

The Night Fury

Our new vehicle search had, unsurprisingly, taken some time. Matt is meticulous in his research and assessment of cars and for a family car that needed to last our family quite some time, he was even more so. A few weeks ago we had it narrowed down to the Toyota Sequoia or the Chevrolet Suburban. We made a quick pit stop at a Toyota dealership to check the Sequoia out and it became painfully and clearly obvious that our decision was made for us. A Suburban was in our future. Matt settled on the Suburban for build quality, size, and to some degree, overall aesthetics. We gave our "car broker" friend a call, did some searching around, and found one that fit our needs.

In short, I love it. It is roomy (especially with the captain's chairs in the second row), has several features that I love (remote start, heated seats, a "tap the turn signal for lane changing" feature that I liked in my Jetta) and will soon be getting a DVD player system for longer road trips and post big car days when the kids (and Mommy) need the veg time. It is black so I feel like a secret service agent and is shiny and new and way more fancy than I feel like I deserve. It has ample room in the cargo area for my stroller and other stuff and should last our family for quite some time.

We are sad to have to trade in the truck, but it makes so much more sense to keep the Jetta for Matt's long commutes into town. The truck has been a great vehicle for us and we hope to purchase a truck for Matt again in the future. The girls really enjoyed the truck too, but are very pleased with the "Night Fury" or "Toothless" the name bestowed upon the Suburban in honor of the black dragon in the movie How to Train Your Dragon. We are grateful for such a luxury in our lives and hope this car serves us well!

Goodbye to a good truck!

Attitude change

Today I needed attitude help. I was exhausted and cranky and taking it out on everyone around me. At one point I told myself that I didn't want to be like that. I took a minute, prayed for help, and resolved to change. I can't say that I was chipper for the rest of the day, but it did help a lot. Especially with the kids. As I reflected, I thought of something interesting. It really is a three part process. You have to recognize the need for change, ask for help in changing, and then resolve to make it so. You have to be an equal partner in changing your perception or your attitude about something. It takes humbling yourself and bolstering yourself to do so.

I am hoping a good night's sleep and prayers for lots of attitude changes help make tomorrow an even better day.

New Delicious Chocolate Cake

As many of our friends, family, and readers know, we are always on the lookout for a good chocolate cake. Last night, Matt's parents were in town and we had already arranged for an overnight babysitter (a great benefit of bottle feeding), thus we all went out to eat at Morton's. the food was pretty good, the spinach salad was amazing, and dessert and coffee was my favorite. I loved the texture of the creme brûlée we ate, but it needed an extra dose of vanilla. It was pretty bland. But the chocolate cake more than made up for it. The server kept trying to get us to try the molten chocolate cake (which I am so over that foodie trend) and we are glad we got the traditional chocolate cake instead. It was super soft and slightly fluffy, good quality, intense chocolate, and the perfect amount of dark chocolate ganache between the layers. It was a lot like The Palm's cake but with four layers instead of twelve thin ones. It's a must try for Matt's sister and brother in law next time we see them and I foresee Matt stopping to get a slice occasionally in the future to bring home for us to share!

It wasn't until the cake was almost gone that we thought to get a picture. Delicious!

Great Video

I know what you are thinking...Ashton Kutcher giving a great motivational speech...really?!? I want you to give it a chance. Four and a half minutes of your time that you would be hard pressed to find a better video worth your time. I always thought the guy was a joke. Sometimes funny, rarely serious, hardly an A-list actor, but he has now propelled to my favorite celebrities list.

http://www.youtube.com/watch?v=oU5pR6o6HTA

I love so much of what he says...

Opportunity looks a lot like hard work

I never had a job that I was better than

Each job was a stepping stone to my next job and I never quit one job without having the next one

The sexiest you can be is to be smart, the rest is crap, and is being sold to you to make you feel less than

Be smart, be thoughtful, and be generous

You can build your own thing, your own life that other people can live in

All of this and more in just four and a half simple minutes.

Wedding Rules

Don't throw tortillas. Tell your photographer and DJ that they can't eat until everyone else has eaten. Don't take off shoes, someone will break something and you could get hurt. Don't piss off the person serving your food, smile and say thank you. Wait to ask for seconds when everyone else has had a Chance to go through the food line. Let the grandparents go through the food line first, better yet, get their plate for them. Don't get drunk, this is a special day, nobody wants to worry about the drunks at the wedding. Spend money on good food and good cake, nobody likes yucky cake. Make sure you know what your caterer and venue takes care of and what they don't, nobody wants to beg for cake cutters or floor sweepers. Be careful over open flames- paper napkins, cloth napkins, plastic plates are all very flammable. Don't blow out candles so the wax splatters- it ruins the linens. Don't steal the centerpieces unless told that you can take them home, often times they are rented and can be very expensive. Tip your bartenders. Leave when your time runs out, if you want to stay longer, pay well. If chairs need to be moved from the ceremony to the reception, you don't have to help move them, but move when the workers are trying to do it quickly. No, you cannot serve yourself when there are servers there to serve you and you definitely cannot reach your bare hand into food being made to put on your plate. I'm sure there is more.

Enjoy Every Moment

I have a friend who doesn't really care for the phrase "enjoy every minute" when it comes to raising kids. First, we hardly think the crying, screaming, blow out, throw up, breaking things, pulling hair, fighting with siblings moments count. Second, the good moments are enjoyed. Most mommies don't need to be told that. She says to enjoy every moment as if it is the last because you don't know when it will be the last time they do that thing. You don't know when it will be the last time Mac says "Chicky-ray-ray". You don't know when it will be the last time Keegan signs "bug" with her finger up her nose. And you don't know if it will be the last time Johnny naps on your chest. There are few things in this world that beat a baby napping on your chest. The way they fall into you, the way they twitch every so often, the way they sigh with perfect contentment, the weight of their body pressed up against yours both curled up and spread out, the way time actually does seem to linger are all so wonderfully combined for a great moment. I was afraid that we had our last sleep session with Johnny a few months ago. He would get antsy and fussy if we held him while he was sleepy so we more often that not would put him down to sleep. A couple weeks ago I was treated to a short nap with him and I was happy to have that, even if it was the last time. Today I was treated again, I lazily enjoyed visiting with friends while sharing little moments with my son that I hope I never forget. If your memories really do flash before your eyes before you die, I want that memory included, for all of my children. Thank you, God, for this.

The Giant

I always sympathized with my mother as a child. I knew that I was crazy tall as a kid and I knew that must have been frustrating for a number of reasons. Even though it was mainly a blessing, after all, how else would she have reached anything in our house without my sister and I, but there are odd problems that come with raising a tall child. She had it worse than I ever will, I passed her up in 3rd/4th grade in height, and from that point on, she had to tell me to sit down so she could yell at me the few times that I messed up. She also swore that there were times that she could see me grow. I didn't believe her until middle school when I was walking with some friends and the ground suddenly felt a bit further away from my head than it had moments before. I always grew in spurts and while they may not have been that abrupt, they were awful sudden.

Her biggest frustration (and my dad's too, but he rarely actually went with us, he just had second hand frustration) was shopping for clothes and shoes. I hated clothes and shoes shopping and still don't particularly enjoy it. I was in middle school with a size 10 shoe in women's, I wore pretty much the same size as I do now (non pregnant/postpartum) then as well. I grew quickly and rapidly and would rarely wear the same size for multiple years until I settled out in High school.

Today, I realized more levels of worry with a tall preschooler. I went through all of our kid clothes last week to see what we needed for fall/winter. I make a note in my iPhone ensuring that as I see sales, I know what sizes, colors, or things to look for. Mac surprised me last week when I saw that she had outgrown all of her shirts in addition to her pants. I knew the pants would be short, but I had no idea that the 5T shirts would be so tight on her. I made a little note of it and tried on shoes. When we tried them on it seemed that a kid's 11 or so would be more than acceptable. Fast forward to today when the child needed a 12 1/2 or 13 in sneakers (a 12 in dress shoes was a little big, but not much with tights) and was filling out the shoulders on size small (6/7) shirts. I went ahead and held up leggings and while a small will definitely work, I may try on a medium as well so we can get a little extra use out of it! How does a kid grow like that in one week?!? Some of the sizing is due to cut and styling, but it was consistent at a few different stores.

The most worrying part of moving up in sizes is finding things that are appropriate for an almost 4 year old to wear. Many shirts have sayings about talking on the phone, about meeting up after school, or other things that are technically fine, just not in the realm of what a preschooler is doing. And I want her to have "fun" shirts, not just plain colored shirts. Don't even get me started on some of the dresses for this new size grouping though. And the clothes are more expensive too. AND. AND. The big kicker. If we get Mac medium sizes, there is a pretty good chance that we are going to have to buy size small for Keegan at some point so we are going to have to buy it all anyways!

So here is where you guys help me out. Where can I buy good quality clothes for a good price that are appropriate for a giant preschooler? In the mean time, I am going to go thank my mother (and father) for being patient in my clothes shopping endeavors.

Pico Snapper

I only like to get fish the day we are cooking it, so the last few grocery trips have included fish for dinner that night. Today, red snapper was on sale so I departed for my original plan of salmon in favor of the snapper.

The method was super easy, I seasoned the snapper with salt, pepper, and olive oil. I only used a sprinkle of salt and when I make it next time I will be a little more liberal with my usage. I baked it at 475 for about 10-15 minutes until it is almost done (you will see the flesh turning white and starting to flake). I then took the snapper out, topped it with a pico made from tomatoes, cilantro, red onion, avocado, salt, and a splash of vinegar (or you could use lime juice, I was out). You could stop there and it would be light and delicious.

I didn't stop there, I added monterrey jack cheese and broiled the fish for another 5 or so minutes. It wasn't super heavy and tasted really good. Almost like an omelet with all of the toppings and melted cheese. This was 2/3 of a pound and was a good amount for Matt and I.

Give it a whirl if you are looking for another easy topping to add to your fish.

Curing Ds

A friend recently sent me the link to this article.  It is an interesting one, if you chose not to read it, basically, scientists have started figuring out ways that they can "silence" chromosomes. The thought may be that, somewhere in the future they can silence the extra chromosome that is the cause of Down syndrome. Scientists don't believe that it could be used to silence the chromosome across an entire life, but in isolated portions of the body in order to help prevent or cure common ailments or diseases that can be found in high correlation with Down syndrome.

This article is hard for me to think about.

On one hand, I think it would be fantastic to make sure that Johnny and other's like him, live a long and full life, absent of as many problems as possible as far as heart disease, leukemia, Alzheimer's and other massive health problems are concerned. My question with this however would be wondering why there isn't more research being developed to treat those concerns for the general population. Because these ailments are found in large numbers regardless of chromosome enhancement, I would encourage researchers to look for cures that are not chromosome related. If they could effectively isolate a chromosome in that way, it would mean great things for the Ds population, but would not be able to help the general population in a meaningful way. Do I hope for a cure for these conditions? Of course. But I want a cure that all can use.

I am concerned as well because there could never be research done without potential serious consequences in altering who that individual was. If you begin isolating and silencing chromosomes, will that alter other aspects of behavior, tendencies, and personality? While I would love for Johnny to be healthy, I wouldn't want to change the core and essence of who he is. I wouldn't want to lose the boy who has stolen my heart every day of his life. There is no way that science could guarantee that parts of him wouldn't be lost with this silencing occurring. It feels like such a slippery slope in trying to control genetics to that large of a degree that you are isolating 1/47th of the chromosomes found in millions (if it is partially silencing) or billions (if complete) of cells in his body.

Further, while I want him to be wonderfully successful in all that he tries to do and to never have a pain in the world, that isn't reality for any person. I cannot write his story for him and I cannot predict what plan is set out before him. That isn't my role. While I fully believe that God gives us cures and scientific research for all sorts of purposes, to go in an alter chromosomes to that degree seems a step to far for me. There is a point where I have to accept that there isn't "that much wrong with him" that I would alter cells within his body.

Interested to hear what others have to say. It is hard to collect my thoughts on this article because I enjoy reading the science and may have thought it fascinating years ago. Now the personal side of things hits too close to home and it is hard to wrap my mind around. Feel free to comment, message me, email me and let me know what you think.

Small Group

I never intended to join a Sunday school class at church, but in order to meet other people our age at church, it was the best way to go. Fine. I never intended to join a small group though. Three hours of church/fellowship in the am was all I needed. Then God kind of threw a small group into our laps. Fine. But I'm not meeting every week- oops. And I'm certainly not interested in small grouping long term- oops. We are now on version 2.0 of small group and along the way I have been blessed with amazingly wonderful relationships, teachings, and support. Tonight, I'm especially thankful. As my small group girls and I shared worries and concerns, life changes and normal goings on, I was happy that I don't have to trudge through life alone. I can pass along part of my worries and woes and take a bit off of friend's shoulders too. And with the load redistributed, it feels a little bit less like trudging and a lot more like a journey worth taking. In the end, we are all blessed beyond measure, but it's nice to talk through job concerns, money issues, things you said wrong, things you did wrong, worries over your kids, victories with your kids, questioning where life is going, and refocusing on what is most important. Even in a meeting where prayer requests are mentioned in passing, it means a lot to know that a group of women has your back.

LoveLand

When I began working at Cy-Ridge as a World History teacher, I was introduced to an amazing team filled with all sorts of wonderful people. One of those people has a daughter with intellectual disabilities. We have kept in touch over the years through both of us moving on to different phases of our life and I have very much appreciated her friendship, insight, and support.

This past year, her daughter was cast in a brilliant new film. Love Land tells the story of a group of people placed in a community home for people with special needs. I won't tell the whole story because I really want you to go here to check out the trailer yourself. If you watch the trailer, you will see that instead of telling the story with actors portraying people with special needs, the director and production team cast people with special needs acting. And we aren't talking about token one line speaking parts or background parts, the main cast all have special needs.

Right now, the film is in post production. They have started their KickStarter campaign to try and get the money to edit and re work the sound to make it the quality it needs to be to show on the big screen. It would be fantastic if this movie could be finished to this level and be given the opportunity to make it on the big screen.

I can't tell you how encouraging it is to see a film not shying away from the compelling stories and lives that all individuals have. I can't tell you how my heart ached and tears sprung to my eyes to see a boy, who like Johnny has Down syndrome, and pursues a loving relationship with a girl in the film. A boy who, from what I understand is just as charming and personable in real life and who makes girls giggle and smile when they say his name. I think, at the heart of this film, there is a very real message that can be taken away. And there is a strong desire to show the similarities and differences that this population of people have with the rest of the world. I am proud of my friend's involvement in such an amazing project and hope that more people get to see the amazing work that is being done.

Wow.

Maybe I shouldn't put this out there...but I am. Today, one of my children, who will remain nameless, went to the restroom at Chick Fil A and walked out and into the dining room holding her panties in one hand and her dress hiked up to her head in the other hand. Needless to say, the high schoolers sitting nearby could not stop laughing at the spectacle. It was an embarrassing and funny moment, way better than being "the mom who's kid had an accident in the play area" which I have totally been before. And, I'm pretty proud that my older two kids can scamper off in a public place that they know pretty well to use the restroom independently. These are moments that I will never forget!

Pizzadillas

A long time ago, I was in a girl scout troop. After the girl scout troop disbanded in middle school, some of us would still meet up once a year to catch up and see how life was. On one such occasion, we went to TGI Fridays for dinner. It was there that a delicious appetizer caught my eye. The pizzadilla. Instead of a traditionally Mexican flavored quesadilla, they had brought forth pepperoni and Italian cheeses to be grilled between two tortillas. I gave it a try and was delighted in how delicious it tasted.

Fast forward to being an adult and having complete control over what we eat on a regular basis. The memory of a pizzadilla would flit in and out of my brain throughout the years, but never at a time that I was menu planning, at the store, or even remotely near the position to make it happen. Instead of writing it down to make sure it happened sooner rather than later, I would let it flit back out, lost in the depths of my mind until it made it's tantalizing presence known once again. This week as we searched for fun ways to enjoy Mattie's two week hiatus between semesters, sandwiched between a date night for us and going to bed early came the concept of having a fun movie night with the kids. We tossed around the idea of having pizza (which we love) and then, there it was, the memory at the perfect time, the pizzadilla! It was awesome, delicious, amazing, drool worthy, everything I had hoped it would be...and more. The concept is simple enough: Italian cheese blend, chopped up pepperoni, place between two tortillas, heat, cut, enjoy. I do have a couple of tips though. We used these tortillas that you cook at home:

We get them at HEB and they are perfectly light and chewy to make "fun, non-Mexican quesadillas". Some tortillas taste too much like Mexican food and would have distracted from this. Also, the texture made the quesadilla taste more like a pizza roll from Double Daves or Gumby's which equaled extra yumminess.

I would make sure your pepperoni is separated for easy spreading around the tortilla. Also, don't chop it smaller than fourths. It needs the extra meatiness of larger bits.

Serve with marinara sauce for dipping. It's good and fun, plus you will get extra vitamins and nutrients from the tomato based sauce.

We contemplated adding other "toppings" into our pizzadilla. I think that small, slightly sauteed or roasted mushrooms would be good or thinly sliced and slightly cooked onion would be ok. However, I wouldn't do much more than that and frankly, these are so good on their own that the extra work isn't really necessary.

We served these with a salad and were plenty full. The girls gobbled them up which I was slightly surprised by, they are pretty plain when it comes to quesadillas. We will definitely be adding these into our "treat meal" rotations more often.

Balance

I am working on the constant balancing act that we all have in life. Working on finding time in my schedule for my at home job, working on two or three mega blogs/writing posts, spending time with my kids, cleaning (I think I'm getting better although anyone would laugh if they saw my house right now), giving each kid the help they need to grow, spending QT with Mattie, and finding recharge time for myself. I do know that there is always time in my schedule for pizzadillas and a movie with my family, QT with the hubby, and when a friend shoots me a text asking for wine and dessert that I can be there, followed by four hours of chit chat. I haven't found the solution to global hunger, warming, or wars, but my heart is content. It's a good place to be, despite the mess, we are blessed!

Family Pictures

We had family pictures taken with some of Matt's family this spring. It was a really nice day and we are so grateful to have captured some happy faces! We have had them for awhile, but haven't had the chance to put them up. The pictures were taken by Butch Ireland, the same photographer that did Matt's sister's engagement photos. He has a lot of talent and I love a lot of his photos and not just the ones of our family. I am also thankful for this little snapshot to include Matt's sister and the kid's cousin, Titus. We don't get too see them as often as we would like, but we are very glad for the times we do!

Celebrate!

Mattie is done with his second to last semester of his MBA as of 7:20 tonight!!! He has two weeks off from school and after that, 15 weeks of school until he is done! And some of those weeks he won't have class because they are counted for him when he goes on his international trip to Dubai and India. This semester was draining for him, lots of math in his head, and I'm so glad that the end is definitely in sight. He has worked hard and I am proud of him. Plus, he got Coldstone ice cream for us to celebrate on his way home, so I love him all the more for that! Now to start planning a graduation celebration! Still mad that he refuses to walk...

The Cure All

Very, very sick with this crazy and silly stomach bug that has been going around. There is no predicting when and where it will strike. It made for a very interesting road trip from Stephenville to College Station yesterday and today. Thank goodness it seems that I am the only one to have caught it this go around. Prayers that nobody else gets it!

However, it did provide the excellent opportunity to prove, once again, the end all, be all in cures for stomach bugs. Once the puking stops and you can hold in liquids without using the restroom as soon as you take a sip then you are ready for....wait for it...a...bean and cheese burrito from Taco Cabana. Matt's dad recommended the fiber trick to me back when I was subbing in 2007 and it has worked every single time in giving your stomach and digestive system something to hold onto as it "heals" from the bug. It definitely worked it's magic today!

A Good Day?

Today WAS a good day. I promise. But it was one of those days that's hard to classify as a good day. One of those days that you are feeling led to do, that's the right thing, that's good for everyone involved, but you keep running into roadblocks on your way to accomplish it. We had been trying, off and on, to see Matt's grandparents for the past six months. Finally the stars aligned for us to spend the weekend in College Station and use that as a staging point for a quick trip to Stephenville to see them for a few hours. We had it planned out and got the call yesterday that grandpa was in the hospital. After checking with Matt's dad, the doctor, it was determined that we could still visit and that grandpa was in his own room too. Yahoo! So we load up the expedition, grab snacks, plug in some movies for the girls, and listen to Johnny squeal and babble the whole way there. He has decided he is too big for a morning nap and is trying, relentlessly, to fight it. No biggie. He will be tired when we are there, but we will make it work. The trip took a bit longer than expected, but we wiggled our schedules around and stopped to get lunch to take to grandma. We picked a nice little deli and figured some cold sandwiches wouldn't take long to get. Wrong. Wrong. Wrong. We placed our order and thirty minutes, an emergency bottle feeding, and 100 MacKenzie questions later we had our food to go. Ok. Almost there. Except Matt gets a call that grandma and grandpa are not at the hospital one block away, they are back at their apartment. Sigh. Ok. Plug in their address to Apple maps and get directions to an abandoned parking lot where Siri tells us we will have to walk to our destination. I told Matt that Siri has AI and is out to kill us but he doesn't believe me. We switch to Google maps and get led on a wild goose chase around Stephenville to go back to where we were at the hospital and then only slightly misled near their house. Once we finally got there it was a good visit. A worth it visit. But I really had to ask God for some help. Why was something so purely good, such a challenge towards the end?!?

Showin' Love

Gonna make this short and sweet... Today the girls and I showed love by making an Italian cream cake for my mother in law. Cake making equaling love is a life lesson I learned from my mother and is a lesson I am honored and blissfully excited to be showing my girls. To show them the care that goes into making someone's favorite cake from scratch, it's good for them to see. It's good for me to do. As a friend and I decided this week, if someone has something going on, your response should be, "I'm praying for you and bringing you a lasagna." It a casserole. Or gumbo. Or cake. Lots and lots of delicious cake. How do you show love?

Mac's confusion

When my grandmother, MawMaw passed away, we explained to MacKenzie the best we could. Her little 3.5 year old mind hasn't dealt with death in a large degree. We explained that we wouldn't be able to see her anymore because she died and went to heaven. The inevitable question of if we would be able to go to heaven came up and I explained to her that, hopefully, she wouldn't go to heaven for a long time.

We have been trying to see my other grandmother, Nana this week. When I talked to Mac about going to see her, she looked at me with a puzzled look on her face and ask where she lived. I said that she lives at her home and we haven't visited her at this place yet. She then said she thought Nana lived in heaven. I had to explain to her that she was thinking of MawMaw and that Nana was still with us here and we could still see her.

Funny how those little minds work. And very glad that we can still visit 3 of Mac's great grandparents!