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...

A Different Independence Day

Two years ago today, we found out that Johnny was coming to us with an extra chromosome. July 5th had held a lot of anticipation for us, friends, and family who had prayed over our doctor appointment and waited with worry and concern along with us. We had made the difficult decision to find out the results of our amniocentesis in person, at my doctor's office, in order to be together and to have control over the setting and manner in which we learned more information about our growing baby. As much as I had worried and fretted over the weeks leading up to this appointment, the night before found me increasingly anxious and nervous. At the appointment itself, I continued to feel this way until Dr. Norton walked in. In that moment I felt a sense of peace and if you had asked me if I thought my baby Raptor had Down syndrome or not, I would have told you yes. We had prepared ourselves to hear the news and even though I felt that this was the case, actually hearing it confirmed was still devastating. I know I cried and needed moments to collect myself. I also know that, like my appointment 8 weeks prior in which we discovered the first markers of Down syndrome, I felt a little numb. 

The day continued on hard. We had our girls to come home to, Matt had tests to prepare for that evening for graduate school, and life still needed to go on. However the hardest part of the day was yet to come. Telling people, many, many people that cared about us and our sweet baby was more difficult than I ever imagined. It took us time to figure it all out. I wanted to close the door on the day, move on to the 6th, and just have some miraculous way of making everyone know at once in their own perfect way. That wasn't possible though, my mom was first since she was hearing watching the girls, phone calls to Matt's parents and my dad came next. More phone calls, text messages, emails, and a blog post conveyed information and emotions to people throughout the day. In fact, I think I was in the midst of all of that at this very moment two years ago while trying to deal with my emotions and sadness at the same time. If I had known how hard it would be to tell everyone, I would have never said when we were finding out so I could have spaced it out differently and I would have had someone make some of the contacts for me. It was really overwhelming at the time. 

I think this feeling stemmed from multiple things, but the largest was the fear of rejection. I had entwined my heart to this baby when I found out that he or she was on the way and that bond only grew stronger when I found out that he or she may have extra needs. I was sad about that, but ferociously protective of him or her immediately. I would literally cling to my stomach as I talked to people about my worries and concerns for Baby Raptor, subliminally and consciously fearful that something could happen to take him away from me. But others didn't have to feel that way and each phone call I made opened me to rejection and disappointment from whomever I was telling. I was afraid of the "Oh" laced with dashed dreams for our family. I was afraid of the "I'm so sorry" paired with a choked gasp of air. I was afraid of the "Are they sure? Surely this isn't right?" hoping that the doctors were wrong, that there had to be something better for our child. I was mostly afraid of the silence. There was no reason to feel this way, it just scared me. I was fearful and sad in those hours and felt more vulnerable than I probably should. 

I didn't know what Down syndrome would mean for us, neither did most of our friends and family. But people would have to love and accept my child or move on from friendship with us. We loved this child and wanted all the best for Baby Raptor "in spite of". Additionally, we were going to meet all of this baby's needs, whatever those may be. 

It was a hard day, not the first of Johnny's life, and surely not the last. I have held on to this day as being momentous in our lives. However, like I just said, we didn't know a lot about what Ds would mean for Johnny or for our family. We knew he had an extra chromosome that day, but we didn't know anything about who he is and who he would be. I have looked at July 5th as being a defining day in our life and it would be, if all we needed to know about Johnny is that he has Down syndrome. That extra chromosome impacts a lot of what we do on a regular basis right now because we are pushing towards some specific goals, but it doesn't impact everything we do and it isn't all that Johnny is. He is more than the diagnosis, so I release this day back to the calendar. Will I think about his diagnosis more throughout my life? Probably. Will I remember this day as being the day we found out? With my memory, definitely. But I'm giving back the hold the day had on me, I'm taking it off the pedestal, I am filing it away to a bit of normalcy. I don't think Johnny would want us to file July 5th away as a day that was that important in his life. I think he would rather we remember July 5th for a thousand other reasons, mundane, normal, post Fourth of July reasons. I think he would rather we went swimming, are leftover BBQ, gave him Popsicles, and spent time as family, than remember the hardships of two years ago. For Johnny's sake, I declare my independence from his diagnosis day.