Mac-a-doodle-doo!

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Keegan Joy

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Johnny

Lilypie Second Birthday tickers

Big Day

Today I went to my very first nursing school informational. I have been busy collecting information online, comparing programs, and trying to decide when to take the next step. We thought nursing school would be a long way off, something to pursue a bit later, but with a fourth child still evading us, Matt and I discussed it and decided it was time for a little action and exploration on my part. In reference to nursing school that is...


In all the programs I am looking at, the common factor is the type of degree I think I will be pursuing. Many nursing schools have a fast track/second degree BSN which would allow me to obtain my Bachelors of Science in Nursing and prepare me for licensure as an RN in anywhere from one year (after pre-reqs) to two years. Obviously, as a former history teacher, I have some sciences to take first. 

Honestly, I was and am a little nervous and scared. I want to do well, at home, in school, and in a profession. I want to manage and balance it all. I want to be successful in all the ways I perceive myself of being able to be a success. I want something that's mine, a profession that I can be passionate about, and a way to serve others. It my head, and my heart, it seems ideal. To find that convergent point at which passion and commitment meet the opportunity to make money is rare in our society. I know that nursing will be good and that I will make it even better. 

Still, I'm afraid of failure, in application, school, and the profession. I'm afraid of what I will miss by committing to more studies. I'm afraid of not being enough. 

Those fears aren't enough to stop me. On one of my pinterest boards I have a quote that states, "If your dreams don't scare you, they aren't big enough." This dream will take a lot of work and energy. It will take sacrifice and devotion. It will take away from many things as I pour more and more into it. But that nervousness and fear is beginning to turn into adrenaline and excitement. It's a good place to be!

For now, I'm just going to informationals and meeting with advisors and beginning to narrow down my next steps. I am looking at a few schools a bit closer and I may take one of my pre-reqs next semester at a local community college if things are still moving that way later this year. I am at peace with acting upon this goal in small steps and taking the time to drink it in. 

What nursing school informational session did I attend today? Do you really need to ask?


It's on a short list, but may not be at the top. We have more schools to talk to. 

Of course, having the opportunity for some of my favorite CS foods so frequently may be taken into consideration on a pro/con list! I cannot tell you how good this sandwich was from Blue Baker today!


I am sure there will be more to write as things develop. Tonight my tummy (because of the sandwich) and head (because of the school) are full of possibilities on what direction we may take next!

Update MacKenzie

MacKenzie,


It's going by too fast! I'm blinking for too long or you fast forwarded time because you change tremendously each day. Daddy and I marvel at each change and show of new growth and cannot believe how amazing you are. 

It seems odd to update you on your sleep at almost five, but in case you are interested for posterity, you sleep ok. You don't seem to need as much sleep as other children and if someone happens to wake you early, that's it, you are up for the day. Additionally, unless we run you and challenge your brain each day, you have a hard time going to sleep. I think your brain just takes a little while to slow down and then, once it's awake, you are too. The other day we were at Dee and Doc's house and you woke up and were fully dressed at 4:30 am, ready to start the day. I had to insist on you laying back down and "fought" with you the next 2 hours with the incessant "is it time to wake up now" questions. That being said, like all growing kids, when you are maxed out, we know it and try to get you extra opportunities to sleep or rest. 


You are a voracious eater although your tastes change from time to time. I guess it's probably not your tastes, but your preferences each day. You love pancakes and waffles, yogurt, noodles without sauce, chicken of any type, whole apples, broccoli, and CHIPS. You are obsessed with chips and I think it's very good that we don't buy chips very often because you may sneak them all out of the house. The past two weeks we have been putting the kid plates on the table then serving our dinners and by the time we sit, you have cleaned every bite of food of your plate. In fact, last night you were literally shoveling carrots and broccoli into your mouth as fast as you could with your hands. I think a growth spurt is imminent! 

Speaking of growth spurts, I was shocked to look at you helping with dishes one day and seeing this-


You are definitely not my little baby anymore. I know I've had that realization before, but this was slightly shocking nonetheless. You have emerged into this even taller, lankier, funny girl and it's amazing to be a part of. Like your sister, you love to help with dishes, but have to be convinced sometimes to help with the dishwasher itself. You do love to set the table or to help get meals ready so we try to encorporate that in as much as possible. You are also very good at helping Mommy take care of Johnny by giving him little things he needs or singing to him when he is frustrated. In other sibling relationships, you have been playing fantastically with Keegan and it's fun to hear your pretend play. 



You love to play with little animals, especially toy alligators or snakes. You also love to read books and to do artwork. You are very precise and detailed with your artwork and are diligent to make sure it looks the way you want it to. You also love to be outside, to ride your bike, and to run. The running is almost incessant. We will be sitting in the living room, playing, and you will get up and run a few times around the house as fast as you can. You have great form and long strides and the happiest running face I have ever seen! We are trying to figure out more ways to foster that love, keeping you guys active is important! I think you also love memorization and knowing/remembering things. It's uncanny how easily things are pressed on your brain and, again, the gleeful look on your face when you recall some fact or occurence. 



We love you so much Mac! While you present a shy and discerning face to the world, we get to see your silly, kind, and enthusiastic nature. We are honored to be your parents and appreciate tagging along for an amazing life!

Love,
Mommy and Daddy

Keegan update

Keegan,


I cannot tell you how frequently your daddy and I feel the most sincere appreciation that God picked us to be your parents. You make us so happy, you are always sweet and affectionate, and try to make everything fun and silly. There are so many times I think to myself that I want to capture full images of you because you are simply charming and enchanting!



For some of your regular things I like to take note of, you have many favorites. When asked about your favorite color you will reply quickly, "Pink and Purple! Actually, I like all the colors!" Mommy finds that interesting since you will rarely wear anything besides a pink dress. Hopefully you will be happy with dresses and tights this winter, you will have to wear something on those strong legs! Your favorite food is spaghetti with sauce, but you also love yogurt, bagels with jelly, all types of fruit, and lots and lots of milk. You will sometimes eat a lot, especially if there is fruit, but you aren't a voracious eater. You have been like that since you were a baby though, eating your fill, then looking for new and exciting things to do. Interestingly enough, if you are in a growth spurt you eat even less. You still sleep your normal amount, but will sometimes will creep downstairs and snuggle with mommy and daddy early in the morning. While we don't want to make it a habit, we don't really mind because you are a very good snuggler. You really love all of your stuffed animals right now, especially floppy the brown dog, rainbow dash the my little pony, and all of the littlest pet shop pets. We will frequently check on you before we go to bed, only to find you, glasses on, surrounded by animals. 





You love wearing your glasses and insist on wearing them, even at night. If we take them off, you will shake your head and say, "I can't see! I can't see!" The only time you agree to leave them off for a longer period of time is when you are swimming or splashing. It's such a change from even a year ago when you would rip them off numerous times a day or lose them just to make us mad. We had a small tragedy the other day when they fell of in the middle of a game of chase and mommy accidentally crunched them. They were on their last leg anyways, but mommy's big foot sealed the deal. You have been very sad without them and your face just looks so empty without big, spectacled eyes looking up at us. We are in the midst of ordering both a back up pair and a regular pair. I had the good fortune of finding your old pair (broken and less prescription) and we are wearing those until the other ones get here. You seem much happier with a little help for your eyes. 



We often play games at dinner and try to get each of you to do different faces. I love when it's your turn because every face quickly turns into a big smile paired with giggles. You cannot help but laugh at most situations. You will give us an angry face for a few minutes then burst into laughter, you will try to look scarey, but it's not long before a grin spreads across your face. I love your scrunched up nose and big smile that spreads your overflowing joy and happiness. You tend to be a little wild, looking for new ways to do things and have fun. Daddy took you to a birthday party this past weekend and said there was a big water slide. While all the other kids took laps up and down the water slide using the traditional feet first method, it wasn't long before you were trying new ways to go down. You were quickly honing head first, backwards, sideways, turning while sliding, and getting others to go down at the same time you were. This is not an uncommon characteristic of your play, you love being adventurous and making sure you get full enjoyment of everything you do. You seem to have fun in gymnastics and are very good at the climbing aspects of class. You really want to try dance so we may switch you to that next year. You often dance through the house whether that be pretend ballet or shaking your bootie. You do love hearing music and figuring out how to make your body move along with the tune!


While you love to be wild, you also love down time. I tell people all the time that you are either going full out, 120% or you are dead still. You will play elaborate games, both active and imaginative, creating elaborate stories for your animals or dolls, or you will be sitting completely still, resting or, sometimes, thinking. You will gladly give big hugs or sit in our laps to get extra one on one contact. If you sit near someone, we often see you stretching out your hand to touch the person near you. You are very thoughtful and very kind and always look for ways to help others. You love to make dinner with mommy or set the table and you usually scamper bag and forth from the car to bring bags in from running errands. Daddy rarely has to convince you to help unload the dishwasher and we have both commented on what an amazing dishwasher you are. You happily will stand at the sink and wash the kid plates with soap and water. 


When we are leaving the house, you often run towards the door exclaiming, "Don't forget the Keegan!"  How could we ever forget you sweet girl? You have so pressed on our hearts that we love to be with you and near you and nobody could replace that to us. Thank you for being such a large part of our joy!

With love,
Always,
Mommy and Daddy

Johnny Update

Johnny,


You are growing every day and, to be honest, it has kind of sneaked up on us! Some of your pants aren't long enough anymore, you seem more and more like a little boy when you practice standing, and your will is getting stronger each day. I am happy for each day that you grow in our care. 



You are a funny little guy. You love to pull Tupperware out of the pantry and chase it around the house. Particularly if there are multiple pieces of Tupperware that clang and crash together as you throw, chase, and slide with them around the room. You love to make noise! The other day you were making the most hideous noise with a Tupperware lid being dragged against the wall. You will pound your hands and play drums on any piece of furniture and and loudly squeal and grunt as you look for more toys to play with. We have been leaving your short orthotics on at nap time and you love to drag your heels against the crib and knock them on the wall between the rungs. In addition to making your own noise, you love listening to any kind of music. The other day a friend was singing a song to you and you grinned at her and started rocking back and forth. When I told her that you were much more of a Beastie Boys fan, she began singing that instead and was rewarded with a huge smile and dancing. You also love to chase balls around the room and will laugh with gusto if mommy dribbles the ball around you. You love to flip through books and will sit in Mommy's lap to look through books, especially the pet book that has been your sister's favorite at this age too. 




You are a great eater and will feed yourself all of your meals except for things like yogurt or oatmeal. We are still working on using a spoon for that. But you do ok with a fork and great with finger foods so we are happy. You have the same food we do, but love Mac and cheese, chicken nuggets, mashed potatoes, beans, bananas, crackers, and steak. You tried mashed potatoes for the first time at KiKi's house on Saturday and kept pulling at her arm to get you to feed her more. In fact, I think there was some urgent grunting and "mmmmmmms" in there too! You have recently dropped your morning nap for the most part. You will still doze if we are in the car running errands or going somewhere, but you don't need the morning nap and only will fall asleep for a short time. Your afternoon nap varies, but we usually try to get you to sleep for about three hours in that time. You aren't the best sleeper. I say that hesitantly because you are happy to stay in your crib that whole time (and 12 hours at night), but you toss and turn a lot and wake up frequently. I am glad that you are able to get yourself back to sleep. 



We are working on cruising around furniture and standing more independently to prepare for walking soon we hope. You are learning more sounds and signs too. You will tell me that the cow says "ooom" instead of moo which I think is adorable and you will roar whenever we ask what a dinosaur says. You are still a mama's boy and was very sad the other day when you figured out that I had gone for a few hours and daddy was the one to take care of you. That being said, you will sign "dada" and say it more frequently than you do mama. You pick up on what other people say a lot, if we say thank you to someone or tell the girls to say thank you, you will sign it independently. You also will make your puppy sound for any furry animal! We have had to tell you "no" more frequently for things, mainly for purposely dropping food off the table, and you will look at us like "how dare you tell me no!" You also try to play the cute card and will ham if up for us by making your "cheese" face if you think it will make us laugh. 




Johnny, you are an amazing kid and a wonderful son. You are sweet, stubborn, and energetic. I love the way you take everything in, observing everyone you encounter. I am proud to be your mama and enjoy and honor each day with you. 

Love,
Mommy and Daddy

As Natural As...

Recently, a friend asked about Johnny and his many therapies. I am always happy to expand upon and talk about his therapy, doctor appointments, and other circumstances to most people who ask. In fact, as long as people ask in love, I am more than happy to advocate for my son and other's who may face similar situations. Through the conversation, my friend, who marveled at all the stuff we do and work on, asked if it was all I think about. 


It's an interesting question and one I asked myself when I was pregnant with Johnny. I never knew if there would be a day, or even a moment, that I didn't think about DOWN SYNDROME. That's how I thought of it, as big capital letters flashin over our families all the time. It was so hard to wrap my head around that I found that it's all I could think about sometimes. The words would just roll around and rattle in my head constantly. Down syndrome. Down syndrome. Down syndrome. Over and over again, every other thought was Down syndrome. People would ask me a question, "What would you like for dinner?" And my mental reply would be, "Down syndrome. Wait? What?!? No. Pasta. Say pasta. You always want pasta. Yes, but what about the DOWN SYNDROME?!?" I don't think I ever blurted out Down syndrome in place of a food order. But it didn't stop. My own inner monologue was layered with thoughts about Down syndrome. I would think to myself, "I need to take the kids to the store. Down syndrome. We can go to hobby lobby first. Down syndrome. Oooo I have extra money in my budget for yarn. VSDs and ASDs mean potential surgery. That's common for Down syndrome. After we can go to target, I shouldn't forget soap and toilet paper. And don't forget about the Down syndrome." Seriously. It was a lot of thinking about Down syndrome. Thankfully, it wasn't a lot of meaningful thoughts on Down syndrome, it was just always there, in my head, never ceasing or going away. It was almost as if there was a flashing sign following me around (or maybe leading me) so I would never forget that my child possessed and extra chromosome. Sometimes I wondered if other people could see the imaginary sign too. As if they could tell from my swollen belly and thoughts that I was carrying a child with Down syndrome. It was a silly thought of course, but that is how suffocating it was at times. 

Now, it's better. And I don't know that I think about it less, as much as it has become more natural and second nature to have it on my mind all the time. To think about Down syndrome and all that Johnny needs is like breathing. In breathing, I don't have to think about it in order to do it, and for the most part, I don't have to think about his needs, I just take care of them. Picking Johnny up to work on standing and building his quads or stacking items or labeling everything is just what we do, just like inhaling and exhaling. Scheduling all the doctor and therapy appointments and making sure everyone has the best information available to treat him fully is just habit, the same as trading carbon dioxide for oxygen. Being aware of his glasses, orthotics, low muscle tone, and any other actual special need he may need addressed, is easier than even a yawn or a sigh. You just do it. And I am thankful for it. Just as any parent becomes great at taking care of their kid because it is second nature, so too has taking care of the Down syndrome side of having Johnny. 



That being said, just like breathing, there are times you need to focus on it a little bit more. There are times you need to be more deliberate about addressing certain needs, appointments, or milestones. Just as you may breathe a little deeper for exercise, under certain atmospheric situations, or in fight or flight, you may think a little bit more about Down syndrome and how you can specifically address and meet those needs your kid has. On the flip side, sometimes you think about breathing too much and it becomes difficult, almost debilitating to your body. The same goes with letting Down syndrome consume me and my thoughts. If I think about it too much or think about all the bad things, how hurtful people can be or the sadder correlations within the Ds population, the panic quickly sets in. In fact, the labored breathing, quickened heart rate, sweaty palms, and faint nausea that come with focusing too much on breathing is similar to the anxiety from devoting too much of my energy to Down syndrome only. You have to balance your breathing and take in only as much as you need at a time. 



My every other thought is not about Down syndrome anymore. I do think about it a lot, but in it's proper place, tucked away in the rapid stream of mommy consciousness that flows through my brain. It's there, it influences a lot of our life, but it doesn't scream at me any more. At least it doesn't scream all of the time. Sometimes it's a scream, sometimes a whisper, usually it's just a dull roar. Which, when set along side the dull roar made by grocery lists, schedules, plans for school and gymnastics for the girls, budgeting for dates and a new house with Matt, and dreams for a bubble bath and a glass of wine, a dull roar is just fine with me. 

Jury Duty

Today I answered my first ever jury duty summons. Yes, I know, as a stay at home mom, I could have "gotten out of it". But I didn't see it that way. If Matt was unable to work from home from time to time, I would have used that exemption right now. However, he was able and willing to be a work from home dad for me to be able to serve. 


I knew that, if able, I would answer that call. Jury duty has long since been seen as a burden on our society when it is, in fact, a very important civic duty that we should all view with the utmost importance. We have a responsibility to answer that summons in order to be available for selection on a jury, one of our most important and fundamental civil rights. Years prior to the colonization and eventual formation of our country, British citizens were gauranteed trial by jury in the Magna Carta, a unique and unprecedented document that gave citizens rights, binding the government to obligation to the people and not just the other way around. British colonists carried those ideals to the Americas and expected that the waters of the Atlantic would not wash away those basic and inalienable rights. As even the earliest students of American history would tell you, many of these rights were infringed upon and even denied to the colonists leading to the writing of the Declaration of Independence, where our lack of trial by jury is mentioned, and eventually the United States Constitution where it was included in our Bill of Rights. Ensuring that American citizens would have the promise of a jury of their peers and not just a court official or magistrate was just as important to our founding fathers as issues over taxation, the lack of representation in all stages of government, and the famous ascertation that we all have three inalienable rights. So important was a jury trial that it was listed in the grievances against King George and again set forth in the law of the land as the sixth amendment. 

So when I received my summons, it never crossed my mind that I would try to get out of it because I didn't want to serve. In order for this right to be fulfilled, all citizens who enjoy the freedoms and liberties of the country, should fulfill this duty with the honor and dignity that the founders of this country intended it to be. Was serving on jury duty the easiest and most fun way to spend my day? Of course not, there were a hundred other things I would rather be doing. But it was my responsibility to be available to be on that panel, to listen to each side's arguments, and come to the best conclusion that I could. And reporting for duty certainly wasn't the worst way to spend a day. There was a lot of waiting and sitting and had I been selected, I'm sure there would have been more to follow. The system seemed efficient enough for the workers who are merely responsible to herd the available people to their respective areas. 

I cannot speak to the selection process or trial process as I was released just before noon. My ascertation that reporting for jury duty is important and an honor is by no means a testimony of a flawless legal system. My point is merely this, we have been gauranteed a right that many viewed as a privilege and we should take advantage of that privilege by serving and doing our part. 

Awakening

I know I posted about a week ago regarding "releasing" July 5th back to a normal day for us. I wrote about committing to letting go of Johnny's diagnosis and focusing on who he is and what he needs today. I was steadfast in my desire to move on to the present and where we needed to get to with him. 

I was able to stay out of that mentality for a week and a day. 

It isn't really my fault, I was socked into my diagnosis mentality at church this morning. One of the songs that I clung to as I awaited for news about Johnny and until we met him was Hillsong United's Awakening. 

http://m.youtube.com/watch?v=zQcpMfegDsc

It stirred much in me as I anticipated our child. I felt awakened to a new world that I never even knew existed. That world has a vocabulary, acronyms, timelines, and goals that I knew nothing of before. I felt awakened to a ferocious protectiveness that even I never knew excited inside me for my unborn child. I felt awakened to a new level of gratitude for the relative safety and healthiness of my older two and for the baby that grew inside of me. We thought we could lose him, we were grateful that, although not who we expected, he lived. I felt awakened to an adjusted sense of reality, my expectations were cast aside, and the actual needs of my children placed in the forefront of my mind at all times. 

I felt awakened most to wanting to know my purpose in raising a child with special needs. No longer did I ask "why us?" I wanted to know "for what purpose us?"

As the song says "let your will be done in me". 

It was hard. I cried mouthing the lyrics to this song, unable to pray anything except for "please let my baby be ok" and lyrics to songs from church. I didn't know what or how to pray for my baby, my family, or myself, so I had to rely on the words of others to speak on my behalf. I felt darkness and so desperately wanted to move past that to the light and bliss in my pregnancy and expecting my child. How appropriate that the lyrics of this song speak of the "rising sun that shines, from the darkness comes a light, I hear your voice say this is my awakening." I was so fearful of the numbness that I often felt, I was worried that my numbness would carry over into the love and raising of my child that needed and deserved so much more than I felt like I could offer. I played this song over and over again, pleading for my heart to be stirred and for soul to be awoke to provide what I could for my baby. 

Johnny was my sun that shined in that dark time. With his first breath and calm cry as he was born, I was changed, even more so than going through all of the issues during pregnancy. In that moment, all darkness and fear passed and all there was, was my son, my sun, and my awakening. Pregnancy, labor and delivery, and child rearing can be spiritual in and altering in itself, but that moment, where I had prayed for this awakening and received it, was powerful and perfect. Meeting my son changed me in a  way that I cannot explain, but I praise God for allowing me to have that. In that perfect moment, when he was introduced to me, I knew that I could be the mom he needed. I knew that I would have to rely on God and sometimes others for support, but I could and would care for him and provide for him however he needed. And I knew that my fierce protectiveness had been solidified in me along with absolute adoration and love. 

Today our praise team sang this song that meant so much to me during my pregnancy. It took me back to the despair of the bad days and the hope and joy of Johnny's birthday. As tears sprang to my eyes, I gave thanks for the wonderful time we have had raising Johnny so far and how much we have learned together. I gave thanks for the reminder of where we were and the motivation for continuing on. I smiled in regards to remembering how meaningful his birthday was for us, a birth of sorts for  me as well, preparing to not just be a new mother again, but to be his mother. 

I also wondered what God's will is for us now, how we can continue to serve HIm, and how our family will be utilized in His plan...