Christian Taylor Buchanan

Christian Taylor Buchanan

Wednesday, September 21, 2016

Choosing Grace

Christian & Chris Ulmer
My family was honored with a special opportunity this past weekend. We got to meet Christopher Ulmer with Special Books by Special Kids  and be interviewed by him! Christian did a great job being interviewed and Chris really captured Christian's joyful spirit and laughter! (You can watch that interview here.) The video got over a million views in less than two days, which is awesome! But lots of exposure also always seems to bring out those who are jerks not so supportive. *sigh*



It always depends on the situation how I respond to these things. Sometimes I just don't at all, for the sake of our safety or if something just seems really off. However, when appropriate, I have decided that I won't sit by and stay silent. Maybe it's the lawyer in me, but I don't feel like change will ever happen if no one speaks up. It's bigger than Christian. Christian isn't the only person who has been targeted and run down based on their disability. He wasn't the first and he won't be the last. But in the meantime, I want to do what I can to address this issue.

The issue is the belief that people with disabilities are inherently miserable because of their disability.

The issue is the belief people with disabilities are better off dead.

The issue is the thought that people with disabilities are worthless and add nothing of value to society.

The issue is the idea that permeates to the core of our society that people with disabilities are less than other human beings because they have a disability, that they are somehow a substandard class of people who don't deserve the same basic human rights as others.

I want to put it to rest now. All of these things are WRONG!

To the Melodies of the world: You are wrong. You are as wrong as wrong can get. You are wrong about Christian and you are wrong about the value that he possesses. I feel sorry for you that you miss out on such an incredible person as him. Your words have no power over Christian or over who he is. You can continue to talk and it will change not a single thing. You will still be an adult talking down about a five year old disabled child and he will still be a five year old who has changed the world. 


                                                                                                                         

So, let's start with the original comment, exactly what was said. Someone shared the video I referenced above and shared this with it:

                    "Why would you want a monster for a child. How embarrassing to walk 
                     down the street. How selfish of the parents to allow that kid to walk 
                     around frightening everyone in his path just because they don't want 
                     other people to think they're bad parents." 

I wanted to address this the way I know how, piece by piece, as any good lawyer would do.

Why would I want a monster for a child?
Besides the fact that I'll add the question mark she forgot, because proper grammar, I suppose the important word in this sentence is "monster." So, what exactly is a monster? Her obvious definition of a monster is a five-year-old child with a disability. So scary!! I'm terrified already.

But, let me explain a little about my definition of a monster. A monster isn't the thing hiding under my bed, like I thought when I was six. Monsters are around us, cunningly disguised as humans. Except these humans laugh at the idea of causing pain. They take joy in creating hurt. They revel in looking down on their fellow man, because it somehow makes them feel elevated. 

I'll never understand this type of person/monster, but I know they exist. I've witnessed them first hand. 


So, who here is a monster? I think it would be hard for anyone to argue that a joyful, happy, music loving, joke telling little boy is. 


I'll address the next two things together. How embarrassing and how selfish. I'll put this one to rest quickly. How embarrassing? Not at all. Zero. There is exactly zero embarrassment felt when out in public with Christian. And how selfish? Also zero. I would like to invite Melody to spend a day with me and Christian, and see how selfish I get to be. I barely get time to shower for myself. Being the mom of a special child requires a selflessness that I didn't even know I had in me. I don't wake up every day and want to give of myself so much that it leaves me with very little, but I don't get to make that choice. I'm not special in that respect. It's what any decent mother does. She gives her children what they need. Mine so happens to need more than most, so that is what he gets. It's fairly simple and straightforward. 

Next concern, frightening other people. Again, here we are dealing with an adult who's idea of scary is a five year old with a disability. I'm not sure what type of life she's lived to think this is scary, but I've seen much worse in my 29 years. Frightening is standing next to a hospital bed holding your child's hand, praying they don't die. Frightening is reading comments from people who judge and hate a child based solely on his looks and realizing that your child has to grow up in a world where this type of human being exists.  But a child with a disability. I can't say I've ever been scared of that.



Finally, the thought that I do what I do out of shear concern that someone might think I'm a bad parent. Hmm...well, my first thought on this is, someone, somewhere, already thinks I'm a bad parent, so that kind of puts a hole in that theory. I'll never be perfect. I'll never do things exactly like another mom. Some sanctimommy is going to judge me for having Christian's car seat chest clip 1/3 of an inch lower than she thinks it should be. (Yep, that has literally happened.) See, I don't care if people think I'm a bad parent, because people are going to think whatever they choose to think about me regardless of what I do. I can have some influence over that at times, but sometimes I can't. And it's a good thing that it doesn't bother me because I don't do what I do for my kids to get the approval of strangers. I do what I do because I'm their mom and that's my job. This is how love works: when you love someone, you care for them. When you care for people who are small humans, you take care of them by taking care of their needs. When you take care of their needs, you don't pick and choose what you will do and what you won't. You also don't pick and choose when you will take care of their needs and when you won't. If it's a need, you just handle it. 

See, real love doesn't have conditions attached, or then it's not really love. It's a reward system where as long as they do what you want or be what you want, then you will gift them with affection or attention. Real love doesn't have that type of nonsense attached. Real love accepts a person as they are, imperfections and all, and provides that affection, attention, and nurturing they need. That's not to say that character flaws are just overlook and ignored. Those things are dealt with and worked through and addressed in love. But real love doesn't have a list of standards someone has to meet before they get that love. 

That's the difference between Christian and Melody. At first glance, it would seem that Christian is the more unfortunate of the two, because of the preconceived notions that people have about those with disabilities. But, that's exactly why I write this. I would rather my child be physically blind his whole life and know unconditional love than have him be perfectly-abled and be filled with the amount of hate that some people, like Melody, possess. Let's be honest, it must eat her up on the inside to constantly be so angry and ugly. It takes a really miserable and unhappy person to want to hurt an innocent child. It takes a person who is really hurting to want to cause other people such hurt.


A disability isn't a death sentence. It isn't a recipe for misery. In fact, people all over the world with  disabilities are living happily and well loved. Our society has this idea that it is more desirable to be dead than to have a disability. Can I just end that now and say IT'S NOT!!!! Think really hard right now about someone you know who is unhappy with their life. We all know someone like that. Now think, do they have vision or are they blind? I hope the lightbulb just clicked on for many of you. Having vision does not guarantee a happy life. Having a fully abled body does not guarantee a happy life. There are people all over the world who are miserable yet have perfectly abled bodies and minds.  So, why do we think the reverse exists, that having a disability guarantees an unhappy life? It doesn't. It doesn't. IT DOESN'T!!!!!!

I can't fathom the type of thinking that goes into comments like Melody's. I can only guess that people capable of this type of thinking have not experienced unconditional love like Christian has. And that's unfortunate. THEY are unfortunate. Because that is a basic need we all feel, the desire to be loved. And maybe sometimes when we don't get that desire fulfilled, we try to fill it the only way we know how, by making other people as miserable and hurt as we are. 

So, to wrap this up, Melody seems to think that she knows a whole lot about me, my family, Christian. She made some claims that she knows how much I lay in bed and cry, how hopeless I feel. She caught me huh? I sit in bed and cry at night over how blessed I am to get to be Christian and Chandler's mom. Tears of gratitude do flow from time to time. I also wanted to share a few photos as examples of the hopelessness that I carry and how miserable Christian is. How much he obviously hates me for letting him live, for sharing his life with others, for having a disability. 

Her words for me (I won't type it all out because it's really long and rambles some, but I'll cover the parts that stuck out to me. A "..." indicates breaks in the paragraph): Lacey I know you lay in bed and cry. I know you feel as if you have no options I know you feel hopeless. But I'm here to tell you that you are a selfish human being...I do not give a single damn about your son since there are so many other children that need help and that need love but don't get it...Raising a child with this severe of a disability is detrimental to society because it's not right. It's not the way it's suppose to be...I'm not a hateful person. 

I won't rebut this particular part because there's just so much nonsense that I white girl can't even. But,  please enjoy these pictures of me laying in bed and crying and feeling hopeless. 

I am so miserable to have a loving family



The misery we experience is all consuming at times. 

See the look of hopelessness on my face? Holding up my new book. Ugh!
Hopelessness abounds at my law school graduation where I received my doctorate degree. Laying in bed and crying, I'm telling ya.

That isn't pride on my face, that's hopelessness. 
Yep, pure misery.

Finally, I just want to address one more thing, "Raising a child with this severe of a disability is detrimental to society because it's not right." With such a logical and well articulated argument Melody made here, it's hard for me to think of a rebuttal, but alas, I found one!

Christian is everything that is right in the world. He is innocence and joy and love and happiness and beauty, all wrapped up in a little 39 pound frame. The Melodies of the world are all that is wrong with it. The answer to the wrong is love.

So, even though our first instinct is to lash out at the Melodies of the world, let's take the high road. Let's exhibit the love toward her that God has shown us. It doesn't mean we have to stand by and let her attack us. Obviously, I am addressing that here and dealing with it. But it does mean that I can forgive her and pray for her. Please join me in praying for the Melodies of the world.

Where sin did abound, grace did much more abound. The Melodies of the world are not so far gone that they can't be reached by an all-loving God. Sometimes in our hurt, when we see people dripping poison like she did, we don't want them to be reached, but Jesus died for all of us, even the ones who don't know it yet. He came so that none of us would perish, Melody included. We can't let the hurt that others cause us turn us calloused or hardened. We also can't let the poison that gets tossed about discourage us or make us second guess our purpose. We must keep pushing forward for the good work of the Gospel of Jesus Christ. I must keep moving forward to spread the message that Christian
teaches, so that one day, all people of all abilities will be seen in the same light and treated as equals. God is good, even when people are not. And Melody could keep on spouting hate about Christian until her last breath, but what would it mean for Christian? It certainly won't take away his joy, his intelligence, his love for life, his silly jokes, his purpose. It won't take away the fact that he has changed the world for the better in his short life; that he has brought hundreds of thousands of people together in a community of support; that he gave me the motivation I needed to get my Juris Doctorate; That he can tell a joke and make hundreds of people roar with REAL laughter; That he has been invited to travel the country and appear on national television because people want to know him better; that he is the topic of a book that is projected to reach the New York Times Best Sellers List; That he has encouraged and inspired hundreds of thousands, if not millions of people. That's an impressive list for a five year old.

I am old enough to know not to let one ignorant person ruin my whole day, and I am wise enough to realize the people who deserve love the least need it the most. 

So, I am at peace with the fact that Melody's will always be around, but maybe, just maybe, I can reach a few of them. Maybe the love of God can reach a few of them. 

Tuesday, September 13, 2016

Picking Playdough Out From Under My Fingernails /

We were getting dressed for a fancy, red carpet event. We had been invited to a benefit concert where Christian would go on stage, adorning bow tie and all, and play piano for the crowd. The show was a fancy ordeal, and it was important that we dress well and look put together. My friend was hosting the concert and it was an honor to be invited. At the very least, I had to make sure that we looked the part because we were representing her and her tremendous efforts to put this event together. We HAD to represent her well.

The boys were dressed in black pants, button up shirts, and bow ties adorned with music notes. I wore a dress that I can't wear too many places because it's a touch to "fancy" if you will, but it was gorgeous. My hair and makeup were done up and I felt, well, you know how you feel when you dress up and your hair does good and your makeup goes on well, and you just feel like walking a red carpet?! Yep! I felt ready to walk down that red carpet, get on stage and show off my handsome boy to the crowd!

 As we got ready to walk out the door to this concert, all adorned in red carpet attire, I reached for something, and as I looked down at my hand, I saw bright yellow play dough under my fingernails.

I signed heavily and thought to myself.  "I can't fake being put together even if I try!" I washed my hands and picked play dough out from under my nails for as long as I cold before we headed on out the door. I would just have to address the rest of the play dough later. I walked out the door feeling less "fancy" than I had before I noticed the play dough.

I have a few photos from that night, and you know, the play dough wasn't noticeable; at least, no one said anything about it to me! <Haha!> But that juxtaposition of being dressed for the red carpet while simultaneously wearing bright yellow play dough under my fingernails was, to me, the perfect representation of motherhood.

Motherhood has to be one of the simultaneously most beautiful and not-so-pretty things to exist. It's definitely like walking the red carpet so to speak! It's such a beautiful and exhilarating thing that not everyone gets to experience! We are so lucky to get the honor of being a mother, and at the same time, it's so easy to get distracted by the not-so-beautiful parts.  Think about it, we all see the beautiful maternity photos. They make pregnancy look gorgeous on anyone, but anyone who has ever been pregnant knows that photo is not always an accurate representation of how we feel.

Weight gain, heart burn, morning sickness, hair loss, post partum depression, after birth, contractions, the pregnant waddle, I could go on, but I think you get the point. "I feel big as a whale" is a common phrase I have heard from my pregnant friends. Pregnancy is not always pretty, and neither is motherhood.

So often, we see these gorgeous depictions of motherhood as well, that aren't an accurate representation, at least not always. First skin to skin cuddles with a new baby, priceless. The peace of a sleeping baby on your chest, breathtaking. But not every moment is priceless, or breathtaking, or anything that even remotely resembles beautiful, at least not what anyone would consider typically beautiful, like sitting in the baby's room at 3am for the 12th night in a row, blood shot eyes and exhaustion that brings you to tears, so desperate for sleep that you don't know how you'll do it all again tomorrow.




Take this photo above for example. I was very pregnant with Chandler when this was taken. I think I look beautiful. I think I look like I was made to be pregnant in this photo. My smile says that I love carrying this precious baby in my body, and I did. But the truth is, I was sick my entire pregnancy from gallbladder and digestive issues. Terrifying nightmares haunted me often during this pregnancy and I suffered lack of sleep because I was so scared to go to sleep some nights. (I once dreamed of Christian lying deceased in a casket. I'm talking extreme nightmares.) I lost weight for the last month of my pregnancy because I was too sick to eat. I was terrified about how I was going to take care of Christian's needs AND a new baby's. I questioned my ability to be everything they both my boys needed so much so that I began to wonder what I was thinking by getting pregnant again after Christian.

Motherhood is so beautiful, and at the same time, there are so many things about it that I wouldn't call beautiful. Kind of like being dressed in red carpet attire with bright yellow play dough under your fingernails.

It's so easy to get caught up in the here and now, in the exhaustion of the moment, that we forget to stop and take in those little moments, the ones we may never get again. We will only get to cuddle a newborn for a few weeks before they turn into an infant. We will only get the opportunity to love on an infant for a few months before they turn into a toddler. We will only get to chase after a toddler for a couple of years before they turn into a preschooler. Then we only get a couple of years before our preschooler turns into a school age kid, and although I don't know from experience, I've heard that all you have to do is blink and your kindergartner is graduating high school.

But I don't really think it's our fault that we get swallowed up in this constant battle between trying to enjoy every little moment and not lost our mind in the process. I hope no one hears blame in this post, because that isn't it at all. I think there is this huge expectations on mothers to "have it all together," but the fact is, it's a feat in itself to care for multiple lives beyond your own and do it well. Let's be honest!!!!! Waking up and going to bed on someone else's schedule can be exhausting, especially if that someone happens to decide to wake up a dozen or more times a night for seventeen straight months, but that's not speaking from personal experience or anything. (It's absolutely personal experience!! EXHAUSTING!!!!!) It's hard to give enough attention to yourself and your needs when you're giving enough attention to a child. In fact, pretty much impossible. It's even more difficult to work a job, keep a clean home, the laundry done, food in the fridge and the bills paid, study for class, see your friends, eat a well balanced meal that's not just whatever you could grab in the 12 seconds you had allotted to eat, take care of your relationship with your spouse, attend religious services and car pools and baseball games and gymnastics and piano lessons and parent teacher meetings and play dates and doctor's appointments. Let's not forget ensuring that those little people who made us a mother are eating the right foods ANYTHING they'll actually agree to eat, getting their homework done and doing it right, getting enough sleep, getting enough play time and learning time, enough sun, but not too much; enough attention and love, but making sure not to spoil him while also building important character traits. Nothing too big, huh?

Are you tired yet? Because I'm exhausted just thinking about it. And on top of everything else, we are expected to be a certain weight, not look as exhausted as we feel, have great complexions, be fit and tone, have gorgeous hair that doesn't take too long to fix, look like we are always put together, be well dressed and on point even though we generally have about 3 minutes to dress ourselves, and actually HAVE it all together!!! Unrealistic is only the first word that comes to my mind.

But wait, there's more!!! I can't write a post like this without talking about the notorious mommy wars! Breastfeeding versus bottle feeding, stay at home mom versus working mom, cry it out or bed sharing. A million different ways to raise a child, and mom's infamously battle over whose way is best and why other ways are inferior. I'm not sure there is any greater pressure known to human kind than attempting to raise, nurture, and care for another human being and attempt to ensure that it turns into a decent adult!!

The pressure mothers are under is EXTREME and sometimes I think we do ourselves a disservice by actually listening to all those voices telling us what we need to do and that we are never good enough; cause, ya know what, we don't have to listen to every Pop Sugar article that tells us how inferior we are and we certainly don't have to join in the Facebook debate with strangers about which parenting method works best. We don't have to listen to that inner voice that tells us we failed today, but man, isn't that easier said than done? It. is. SO. HARD!!!!!!!

When Christian was an infant, my first child, extreme and complicated medical needs and all, I felt so clueless so often. And the worst part was that his needs were so unique that no one could really help me or give me guidance. I felt really alone a lot. I think everyone was so taken aback by his complicated needs that they didn't want to give me advice for fear of it being wrong (that can be a good thing at times to not receive advice!) but I think a lot of people just avoided the situation all together, avoided us altogether, when really, I didn't need advice at all. I just needed someone to stand next to me and BE there. I didn't need help, really, I just needed to NOT be alone in the scariest and most stressful thing I had ever experienced up to that point in my 24 years of life. I spent a lot of time alone in hospital rooms, alone in prayer (at least I felt like my prayers were one sided at that time), and alone in the middle of the night caring for my sweet baby.



But, I honestly think, had Christian been typical, I could have very well had the same lonely feelings. I think most moms feel isolated or lonely in those early days of child raising. So much of your time is spent tending to baby that you don't even have time to tend to yourself, let alone to relationships with others. I often hear other stay at home moms voicing that they just want some "adult time" because their days are spent with toddlers and Dora the Explorer. So many people hear this as a cry of unappreciativeness and scold moms for this, but after living the lonely life of a mother, I get it. I know it has nothing to do with not being thankful for your kids! I know it has nothing to do with your children not being your everything! But I certainly also understand how it appears that way to the outside world.

As an almost thirty year old woman, I understand that this season in my life of being lonely and feeling isolated, of picking play dough out from under my fingernails, is just that, a season. I understand that my boys are the most precious gift I have ever been given, and the highest calling I have ever had is to be their mom. But NONE of that negates my need to feel connected with others. My love for my children does NOT somehow end my longing to have deep, meaningful conversations with others who get me on a soul level. The fact that I spent a portion of my day cuddled up with sleepy babies in a joyous bliss that I wouldn't trade for ANYTHING, does not stop the yearning in my heart to feel like I am more than just a diaper changing, snot wiping, cartoon watching, milk supply. Don't hear that wrong. I wouldn't trade wiping those snotty noses for ALL the adult interaction in the world. If I had to be lonely for the rest of my life for my children, I would; but why does it have to be one or the other? I propose that it doesn't.

You know what I think mom's need more than to be labeled, more than advice (welcomed or not)? You know what I think we need more than to not have to pick yellow play dough out from under our fingernails? I think we need support, from each other, and from those around us, and from society. I think the entire world would benefit from us all having a greater understanding of the pressures and stresses that come inherently with raising tiny humans. I think we could all benefit from showing more compassion and understanding to women facing the tremendously difficult (but oh, so rewarding) challenges of tending to the every need of another person!

And I think we need to stop being so hard on ourselves. it's unrealistic to think that you will never make mistakes in life or in motherhood. I sometimes feel like, with my boys, there isn't room for error. I am raising human beings who will be fathers and husbands and leaders one day, and I CAN'T MESS THIS UP!!!! But I have. I have messed up. I have lost my temper. I have made the wrong choice. I have fed the junk food. I have caved and bought the toy.

I don't want to pretend that I am perfect. It does no one any good, and certainly not myself! I don't want other women to look at me and think that they need to try to be "perfect" like me. Not that anyone thinks I'm perfect, just that if I give that perception, they might feel pressured based on what I show and what they see. And that's just it, we generally only get to see the highlight reels of other people's lives anyways. I don't post on Facebook how I just lost my temper with my child, and I am really cautious to even post when I am stressed, because inevitably I will get judged and called ungrateful or whiny or whatever, as if my life is always supposed to be rainbows and sunshine, and as if I should never be stressed or tired or moody. So, of course I'm going to be more likely to post the good things, the fun times, the highlight reels.

First and foremost, mothers are human. Sometimes seeming superhuman, but still human. And I want to be the first to admit that I am as human as the next mom. And that's okay! I am doing the best I can, and I am lucky enough to call Christian and Chandler mine. The rest will just have to fall as it may!




Sunday, June 14, 2015

If it Was Easy

Last week we visited Tennessee School for the Blind. This was a trip that I have been hearing about for about a year. I’ve known it was coming, but I had no idea what to expect. There was some anticipation with a touch of dread mixed in about this trip. 

The purpose of this visit was an evaluation. That single word is too small to really describe what all took place, really. Christian was evaluated on pretty much everything. His vision was checked (no brainer, but they did have an ophthalmologist just take a look, to confirm his vision impairment. It’s always good to have it documented on paper.) The school AKA TSB also brought in physical, occupational, and speech therapists, vision teachers, orientation and mobility specialists, assistive technology experts, a psychologist, and just an entire array of specialists to do this evaluation. He was ranked against other blind children his age to get a more accurate measure because it doesn’t really give us a good picture to try to compare his against typically developing kids. So, in short, this was a comprehensive study of Christian and where he is in all areas of his development and how his vision impairment is affecting his development.




The evaluation was a week long event, starting bright and early Monday morning. We live about 60 miles from the school, and our route there includes metro interstate rush hour traffic, if that tells you anything. So, our 60 mile trip took around an hour and a half instead of around an hour. Each day, Christian would go with his “teachers” as we called them, and play and work and get evaluated. He was asked to do a variety of tasks ranging from simply pretending to drive a car (which he struggles with) to working an assistive communication device (which he caught on to extremely fast, go figure). I would go to parent sessions to learn about the school, IEP meetings, assistive technologies that are out there for the visually impaired right now and such.

Christian was tested for a sensory processing disorder, because he is very averse to certain things, like painting with his hands or touching unfamiliar textures.  He was evaluated on many different areas of development including gross motor, fine motor, cognitive ability, and the list goes on. I honestly can’t even remember them all and don’t have the paperwork back yet to be able to list them to you.

So that is, in a nutshell, what the evaluation was. Before I get into the findings and what we learned, I wanted to just say a little about Tennessee School for the Blind. If I could only choose one word to describe it, I would say “amazing!” We were met every single morning with nothing but smiling faces and cheerful demeanors. Christian absolutely loved going to the classroom and “playing.” In fact, he would cry when we had to leave each day. If you know Christian, you know that is a big deal because strange place plus strange people plus strange things he’s being asked to do plus mom isn’t around plus there is not even a smidge of our regular routine in sight equals meltdowns for Christian man. He just generally does not handle any one of those things well, so to combine every single one of them together, I thought might be a recipe for disaster. But in true Christian fashion, he proved me wrong again and flourished and excelled while he was there. The school is obviously well funded. They have the most massive playground I’ve ever seen. I’m talking it puts any of our local parks to shame. The playground is fully equipped with equipment to accommodate any and every kind of disability, from wheelchair accessible swings to ramps going up to the jungle gyms. It was flat out incredible. We were offered a sleeping and common area to spend time in, which included a kitchen for our use(stocked with snacks), television, and all the amenities that we might need to be comfortable. The teachers and all the staff were not only good at what they did, they were passionate about it. I could tell by the end of the week just how invested they had become in Christian and his education. There were a few teachers who especially took to Christian, and he reciprocated by taking right back to them! Christian would ask for a few teachers specifically each morning when we got to school (Ms. Mo! J)

So, now to the results of the evaluation. I haven’t gotten any of the paperwork or reports back yet, but all of the teachers and therapists sat down with me late Thursday afternoon and discussed the findings with me, so I will do my best to summarize them here. Several things that we did learn was that Christian no longer needs his AFO’s (Ankle-foot orthotics). He has been using them since he began walking because of his clubbed foot. They are important and helpful and really just a pain, so I am excited to be done with them! We learned that Christian’s gross motor function (think walking, climbing, jumping, etc. ) is really good. 

The speech therapist recommended an assistive comunication device for Christian, to help him get across his thoughts to people who might unfamiliar with him and not used to listening ot him speak. Unless I know the context of what Christian is talking about, it's even hard for me to understand him sometimes, so I do believe that some sort of assistive device will be extra helpful for him. I can't wait to see how that works for him and helps him speech grow! 


We also learned that Christian is very far behind other blind kids his age in  speech, cognitive ability, self-help, and basically every area they tested. In fact, he tested as low as 18 to 21 month old range in some areas (I believe self-help was his lowest), and I’ve got to say, I’m surprised but also….disappointed. After four years of what seems like constant therapies and constant work, I feel almost defeated to know that Christian is still that far behind his blind peers. I’ve always known he was behind his sighted peers, and that’s just to be expected. But YEARS behind other kids just like him? That’s just hard to swallow. I almost feel like all the work we’ve done just hasn’t been enough, and yet I know there’s nothing else we could’ve done.
Because Christian showed to have more than 4 areas with more than 40% delays, he is now considered “multiple disabled” for the purposes of the school system. *sigh*

Overall, the week was exhausting, physically for everyone, and emotionally for me. I am thankful that we had the evaluation done so that we can begin targeting the specific areas that will help Christian the most. I am thankful that he is so positive and happy despite facing such daunting challenges. But I definitely feel overwhelmed with the task still ahead. I am trying not to ask myself "How are we going to do this?" or "Why can't this be easier. Why Christian?"

Of course, these delays can be explained by Christian’s cleft and lengthy surgical history, but *sigh* it sure is disappointing to hear that all that work has only gotten him that far. It just doesn’t seem fair, really. All we can do really is just keep working and praying. I know that Christian will be successful in school and whatever career he chooses, but man, sometimes I wish the road we have to travel to get there could just be a little bit easier. I guess if it was easy, everyone would do

Tuesday, February 17, 2015

The First Year

     February 18th, 2012 will mark a huge occasion for our family, so I MUST share it with my readers! Our amazing little fella will turn the BIG 1!!!!! I remember the first few days after he was born, thinking about a year from then, where we would be, and how we would get there. And here it is already. It is so bittersweet to me. I was overcome with joy and love when Christian was born, but also with fear and heartache at his diagnoses and the pain he endured in the first few months of his life. I am overwhelmed with joy that he is growing and doing so well, but I am also a little sad that he is growing so fast.

     We spent February 18th to March 15th, 2011 in Vanderbilt's Neonatal Intensive Care Unit, which is by far the main reason that I don't like Vanderbilt now. As sad as it is to say, we were treated terribly during our stay. We encountered way more hatful people than kind. With the exception a few doctors and nurses, most were sterile to the fact that my heart was breaking for my new born son who was blind. People who didn't care that they made me cry at their coldhearted remarks.  The whole time we were there, I felt like I was missing out on the first precious days of Christian's life.They wouldn't let me hold him until he was 2 days old. They wouldn't let me put clothes on him. They wouldn't let me feed him. The nurses took care of him, and I didn't get a say. They made me go to classes during the day instead of spend time with Christian, which really made me mad. I didn't understand why they would add even more stress on me when I was already dealing with so much. When we finally got to go home, I was overjoyed, but the pain of that NICU stay has left a scar on me that I doubt will ever completely heal.
   
     February 22nd was the day of Christian's first surgery, a little of it was reconstructive, but the main reason was to insert his g-tube. The first 4 days of Christian's life we had watched him eat with a tube down his throat, watched him scream and grab at it trying to pull it out. We were so relieved when they told us they were putting in a g-tube because we were so tired of seeing him suffer. Of course, we were terrified that he was having surgery, but in the mix of emotions and activity surrounding Christian's birth, we didn't even have time to mourn it. We were the sterile ones at this time. We just listened to the doctors, shook our heads in agreement and let them do what they needed to do, almost as if we were zombies, and I guess in a sense we were. We were still trying to greive, to sort things out in our heads, to figure out how we were going to actually take care of Christian once he got home, to see if he was going to live in the next few days.

     When we did get to go home, we actually got to become sort of "normal." Christian cried a lot from the pain of the g-tube insertion, and we went to Vanderbilt literally 3 times a week for different appointments. It was stressful, but managable. I enjoyed it, but I was also mad at the fact that Christian only got to be home for two weeks before I had to go back to work from my maternity leave. Not mad at a person, because no one made me go back, just mad at the situation, and upset that I did not get those precious weeks of bonding time in the beginning of Christian's life. It was also hard returning to work and seeing all those kids, all healthy. I wasn't mad at other people for having healthy kids when I didn't, just more sad that I didn't get the opportunity to know what it was like.

     May 23rd, 2011 was a day that redifined pain to me. I thought I had experienced it all. I had faced the fact that Christian was blind, I had sucked it up and went to all his appointments, I had even gotten used to the g-tube and the fact that he had undergone surgery already. I knew that my life was different forever and I had accepted it. Then, Christian had a major surgery. It was HUGE is the only way I know how to say it, but I don't think I even have to use words. If you look at the pictures below you can see everything.  They say a picture is worth a thousand words. Well, this picture (the post-op one) is worth a LOT more than a thousand. There is a whole story, an entire life, behind this photo. I apologize for the graphic nature of this picture. At least, to me, it is graphic. Every time I see it I literally get sick to my stomach. Just to think of the pain that he went through still tears me to pieces inside, but to know that he will have to do it over and over is what really hurts.
<-- This picture was Christian the night before the surgery. This is how he was born. It took Vanderbilt Children's Hospital about 2 months to name Christian's underlying diagnosis as more than a cleft. His cleft, as you can tell, isn't just your everyday cleft. It is a Tessier Cleft, pronounced "Tes-see-ay" and was named after John Tessier, who classified this unique and extremely rare form of cleft lip and palate. So why did it take Vanderbilt 2 months to tell us what Christian had? There are only about 50 documented cases in the world, so when I say Christian is special, I mean it. :)

There is no common thread for clefts, no absolute reason why they occur. With Christian, we had genetic testing done, and everything came back perfect, so we know almost for certain that it wasn't genetic. But as far as any other reason, we are in the dark. But really, reasons don't matter, because even in utero, there is no "cure" if a baby is found to have a cleft of any kind. The only "cure" for a cleft is plastic and cosmetic reconstructive surgery.

The moments before Christian went back for the surgery were horrible. I felt a heaviness inside of me that I can't describe. When the nurse came to take Christian from my arms to carry him back to the operating room, I thought I would faint. I absolutely did NOT want to hand him to her, but I didn't have a choice. We waited somewhere around 7 hours, getting occasional phone calls to the waiting room from the operating room. The actual surgery consisted of breaking the bone above his nose and pushing his nose back, and sewing the cleft closed on either side of his nose in an attempt to make his mouth close. The doctor also sewed up his right eyelid a little while he was there. Christian did amazingly well and the doctor was very pleased with how everything went. But walking back to recovery to see Christian was the most painful moment of my life. The picture above is what I saw. He wasn't asleep, unfortunately. He was breathing heavily and moaning. I was trying to talk to him and calm him down but the pain was just too much. I remember him trying to cry out, but his mouth was so swollen that he could barely open it to make a sound. He hurt so bad for the next 24 hours that I thought I was going to break down. That night as we got set up in the PICU and ready for the night, I was scared to death that Christian was going to die, and that I was going to be there alone, all my family an hour and a half away. I remember also, sitting in that PICU room, listening to the monitars beep exactly like I had done when Christian was in the NICU, and all I could think was "This is my life now. This is what it's going to be from now on, surgery after surgery, day after day in this hospital." I had been able to handle everything else, but I wasn't sure I could handle this one. And although Christian cried all night that first night, he didn't die. He recovered as quickly as we could hope for, thank God!

We stayed at Vanderbilt Children's for 5 days. We went home on a Saturday, Memorial Day weekend, May 28th. This time our stay at Vanderbilt wasn't as bad. The Pediactric Neonatal Intensive Care Unit was a pretty scary place. I had to fight several nurses on several occasions. About an hour after the picture above was taken, a nurse thought that she was going to put a mask on Christian's face. As I was telling her that she couldn't because he had just had the bone broken above his nose, she placed it on him. He screamed out in a horrible fit of pain and it took everything I had not to jump her and beat the crap out of her for her stupidity. I screamed "Get it off his face! He's not wearing it!" She began to say something again in argument but I guess she saw the rage on my face or heard it in my voice and decided not to. She went and got a humidity box instead to sit over his head as an alternative to the mask. There was also a nurse that literally tried to take his blood pressure about 7 or 8 times in a  row, while he was screaming to the top of his lungs. She had just taken it an hour before and Christian was so tired. He had not rested since he'd the surgery because student nurses came in literally every hour during the day, and regular nurses every 3 hours through the night. Finally I told her to stop, she wasn't trying again, and not to come back to take his blood pressure until the next day. I felt kind of like a jerk after that because she was just doing what she was told as a student, but I was so stressed and exhausted that I just decided that it was for the best and let it go.

To sum it up, it hurt. I don't know what else to say. It was THE most painful thing I have ever had to do. Having to helplessly watch Christian go through so much pain was almost unbearable. I'm not even sure if this will make sense to anyone who's not been there, but I'm going to try to put it into words. Have you ever heard that someone can be in so much physical pain that they pass out or even die because their body just can't take it? Well, there were literally moments where I thought my heart would stop beating right then and there because I was in so much pain, I didn't understand how I was going to live through it.

Maybe I am blogging this to face my own fear. I am not ashamed to admit that I am completely petrified of the next time Christian has surgery. I am not afraid to say that I dread every single second that I will have to wait in that waiting room or that I'm not even sure that when we are called back to recovery, that I will be able to walk under my own strength. I do know that we face this routine several dozen more times (maybe up into the 60's) and I have no clue how I am going to handle it.

After this surgery we went home and started being "normal" again. We still had a lot of Vanderbilt appointments. I remember that the first week we didn't go to Vanderbilt at least once was in August, when Christian was about 6 months old. We had such a fun summer with Christian. We took him to the lake once or twice, we went swimming all the time. Christian LOVED swimming, and I loved seeing him in his tiny little swim trunks with the red lobsters on them. :) He got him a little float that he could sit in and he would sit in that thing and float around the pool for an hour or two at a time.

It seems like once the summer was over, the next 6 months flew by so fast I can barely remember specific details.
     The fall was a really fun time, too. We took Christian Tirck-or-Treating and our course he dressed up as Superman. My favorite memory, though, would have to be when I carved out a pumpkin and sat him down in it to take pictures. Christian absolutely HATED it, but oh my, how I cherish those pictures. It was absolutely precious to me! Everyone who saw this picture would say "Oh how sweet! He's grinning ear to ear!" When really, he was screaming to the top of his lungs while this picture was taken! haha! But I didn't spoil anyone's pleasure by telling them different. :)

    
Thanksgiving and Christmas was also an exciting time! We took Christian to Opryland Hotel with some good friends and just enjoyed the day on Christmas Eve. We had lots of dinners and Christmas parties. But Christmas morning was probably the best. Christian was still a little young to completely understand what was going on, but he had fun none the less. I only let him help open one present because he liked to try to eat the paper, but he had a ton of fun playing with all his new toys. Chris and I got him a handmade wooden toy box for Christmas because we knew he would need it with all the new toys! And it came in handy! :)




<---This picture is one of my favorites. it was taken on Christmas morning. I had been waiting on Christian to wake up so we could open Santa gifts. When I heard him wake up, I walked into his room and said "Christian! Santa came!" and he immediately burst out with a big smile and silly giggle! It absolutely made my Christmas perfect!   
 This picture above is Christian and his cousin Allison playing under the tree after the presents were opened.

The new year came and passed as quickly as I type this sentence. Christian stayed with my mom while we went out with friends on New Years Eve, and as the new year began, I began planning for the BIG birthday bash. January flew by just as fast as the new year, and my baby boy was quickly approaching toddlerhood.

I am so sad that Christian is already about to be out of the infant stages, but I am thrilled that we have made it this far already! Of course I left out SOOOOOO many other things that have happened this past year, but I wanted to highlight the ones that were most significant to me. There is just no way to incorporate everything!

I especially want to thank some people for their constant support and love throughout this last year. I would NOT have been able to make it through this without them.

My Mom and Dad, who taught me what it meant to be a parent, long before I ever realized what they were doing; and who love Christian so unconditionally that it's ridiculous. They saw past his birth defect the second they laid eyes on him, and that is not something just anyone can do.

Tracy Higgins, who has put up with my emotional roller coaster self on almost a daily basis for the last year, and has never blinked an eye at my taking off of work constantly for doctors appointments. I will never have another a boss or friend like her!

Some new friends who I met solely because of Christian, and who have encouraged me, helped me, and lifted me up in my darkest times, Pam Randolph, Lauren Johnson, Amanda Parks, Melissa Whitehair, and many more. I know that God placed all of you in my path so that I would be able to make it through those tough days and have help when I needed it.

Some old friends, who never once treated me differently after Christian was born, but just kept on loving me and let me know that Christian was just as loved. Just about my entire life changed when Christian was born, but my friends stood steadfast and that means the world to me. Especially Tabitha, Jeanette, and Shawna.

To Harvest View Church, who opened their hearts to Christian immediately the first time we ever visited there. They didn't ask what was wrong with him, or why he looked different. They wanted to know his name, and what he liked, and if they could hold him; another rare thing in our lives. The instant acceptance that we felt there was so refreshing and much needed.

To Special Kids and Dr. Chandler's office, two of the most AMAZING places in the world, who always have answers to my endless questions, and never even act like they mind that I've already called them six times today. :) Who love Christian and root for him to win, even when the odds are stacked against him. They never give up hoping and pushing him to be the best person that he can. I COULD NOT do everything for him that he needs without both of these places to help me.

And to SOOOOOO many people that I could never possibly name them all, I'm talking hundreds! So many people have showed us so much kindness this past year and have reached out to us in ways that we never would have imagined. We are so blessed to have so many amazing people surrounding us, ready to help in any way they can. So many people have offered to help babysit, offered us financial support, sent cards just to encourage us, messaged me or emailed me just to let me know that they thought Christian was wonderful, were ready to pounce to defend me or Christian at any injustice,  or bought Christian gifts for no reason at all, just to name a few of the kind acts that have been bestowed upon us this past year.

I hope you all know just how much we appreciate every single one of you, even if we don't say it enough!

Now that we've made it through this year, I don't doubt so much that we will make it through the rest of them okay as well. So here's to the 1st year of Christian's life, goodbye! And to next 119 years to come, I can't wait to see what an amazing person he will grow into, and how God is going to use Christian! Bring it on!

If you have a special memory of Christian's first year of life, I would LOVE if you would share it in a comment below!


Friday, August 15, 2014

Frequently Asked Questions about Christian




We wanted to take a minute and thank everyone who stops by our page to leave a thoughtful message, words of encouragement, hugs and kisses, pictures and quotes or to ask how our family is doing.  We are so grateful for all of our friends who have been on this journey with our family since our video went viral and to all of our new friends who join our page daily.  Chris, my parents and I are so grateful for the love you have shown for Christian and his sidekick, Chandler.

Our friend, Marisa who helps me admin our page has mentioned that we are asked many of the same questions about Christian repeatedly, and thought we should put together a question/answer sheet of some of the most asked questions so that we can share as much about Christian as possible.  As always, we welcome any messages you may like to send in private and we do our best to try to get back to you all as soon as possible.  To all of our new friends who have just joined our page either through a friend or you found our video, we hope this will help you learn more about Christian’s past, present and for everyone, what is in Christian’s future.

Our precious Christian is three years old and was born February 18th, 2011.  His condition is very rare and there have only been around 50-60 cases ever documented.  Dr. Flores, his plastic surgeon said “he’s one in a million” and he really is “one in a million” to us.


Some of the questions go back to my pregnancy.  I had a very normal pregnancy and actually felt great the entire time.  On our 18 week ultrasound the doctors discovered that Christian had a cleft lip and palate.  

1. How old is Christian / When is Christian's birthday? 
      Christian's birthday is February 18th, 2011. As of today, 11/16/14, that makes him 3 and a half years old.

2. What is Christian's diagnosis? 
     Christian's diagnosis is Tessier (pronounced tess-ee-ay) cleft lip and palate, classifications 3, 4, and 5. Those numbers simply means the extent of the cleft and where cleft is located on Christian's face. The number classification for Tessier clefts run from 0 being the the midline of the face to fourteen with 4 and being the rarest. Because Christian's cleft is classified as two of the rarest, this is what makes his case one in about 50  in the world. What all that means is that Christian was born with many parts of his face and skull missing or underdeveloped, including the roof of his mouth (palate), his upper lip, both eyes and both bottom eyelids, and a piece of his skull on the right side of his head next to his eye.

Christian before his first reconstructive surgery! Sweet sweet baby!


3. How is Christian's hearing? Was it affected by his cleft? Why does he always have a headset on? How can he play on a tablet if he can’t see?
     Christian has great hearing and we are so thankful for that because he loves music so! Christian's hearing was not affected by his cleft. He does get recurring ear infections because of the cleft though. Christian's eustachian tubes (the tubes we all have in our ears that drain fluid off our ear drums) are not shaped correctly and so they don't drain fluid off his ears the way they should. He has had ear tubes since he was about 14 months old and will continue to have them in the foreseeable future.
     This little guy loves music!  Christian likes to listen to all types of music….classical, Christian and his favorite ELMO!  He is so much fun to watch and listen to as he can belt out some tunes!  He has a little music box with his favorite music downloaded.  We also have movies and books that he will listen to as well.   
Tablet: There are many games you can download on a tablet where he can play by touching the screen.  One he enjoys is Peek-a-boo Barn.  This plays "Old McDonald" and you can hear cats meow, dogs bark and cows moo.  So when you ask him how a cow goes, he will moo.  He has learned a lot from his touch/listen/learn games.

A little fact: Did you know that your senses heighten when you are blind?  Christian’s sense of smell is amazing.  We have noticed recently he will enter a room and take a little sniff.  He is learning his surroundings by his sense of smell and who enters the room.  His sense of touch and hearing has allowed him to start playing the piano at the age of 2.  We hope his sense of taste will come later…we are working on that.
     

4. Is Christian mentally impaired? Was his mental capacity affected by his birth defect?
     I think more people wonder this question than actually ask it because they don't want to offend me, so first I want to say that I am not offended by the question. It is definitely understandable for someone to be curious. In fact, doctors were confident that Christian would be mentally impaired. Christian, however, is not mentally impaired and is actually very intelligent. He picks up on things must faster than anyone expected and has a love for piano and other musical instruments far beyond his age level. Christian has surprised everyone with how smart he is and how fast he learns.

5. What does Christian like to do? What are his favorite things? 
     Christian really enjoys music! That is probably is biggest and first love! He loves listening to and playing music. He likes kid instruments but he prefers real instruments for sure! He loves guitar and piano the most. We keep headphones for him (we go through quite a few sets) and he was gifts a little mini ipod that we loaded music onto for him. His favorite music includes contemporary Christian such as Chris Tomlin, Big Daddy Weave, Mercy Me, and similar artists. He also loves Sesame Street but especially Elmo. We have worn YouTube out with listening to every single Elmo song we can find. Christian also enjoys any kids songs type cd's as well. Christian also loves swimming and outside activities. He can literally sit a pool for hours and just play and entertain himself. Christian also loves to read and we have a large collection of children's books. He never tires of hearing stories and will sit and listen for much longer than most kids his age. He especially loves touch and feel books that he can interact with and we are starting a collection of braille books as well. Some people have asked me what they can send Christian for his birthday or holidays or just because. I made an Amazon wishlist for him at the request of a few friends that can be found here: http://amzn.com/w/1K7T6QF0UOFGV .  It is definitely not an exhaustive list, but it can give you some good ideas of some things he likes and needs.



6. What sizes does Christian wear?
      Christian wears a 4T in cloths and a 8 in shoes. He wears a size 6 in diapers or a 4t-5t in pull ups (they run kind of small.) Just FYI, Chandler is in 24 months clothes, size 4 diapers, and a size 6 shoes.

7. Does Christian has any vision? Is he blind in both eyes? Didn't you say he can see light?

     Christian's medical condition pertaining to his eyes is called micropthalmia. "Micro" means small and "opthalmia"  means eyes. When Christian was growing in utero, as his eyes were developing, blood flow was cut off to his eyes and they simply stopped forming. This is why Christian has "some" of the eye ball structure but that he is eye not like it should be. Both eyes are affected very similarly, but we have seen on a CT scan and just by looking at Christian you can tell that the right side of his face was more affected than the left. A CT scan showed that Christian's left eye was more developed than his right, and that his optical nerves were in tact. So it stands to reason that if he can see, it would be more out of the left eye. However, we have found that Christian can see lights if they are held up close to his eyes, and that he has that light perception on both sides. We also know that he can see enough to tell if a light is high or low, as he can reach up to grab a light that is high or down to reach a for a light that is low. Christian can see things like camera flashes, when a light is turned on in a dark room, sunlight, and my cell phone light when he holds it close. He can't, for example, see what is on my cell phone screen, that we know. This small amount of vision that Christian has still qualifies him as "blind" or visually impaired.

8. What about Hero the dog? Is he going to be Christian's seeing eye dog?
     Hero is our Boston Terrier pup who we got in March. His birthday is January 15th, 2014 and he is THE BEST dog we've ever had! He is definitely a member of the family! He will not be Christian's seeing eye dog, but we do plan to have him service trained for Christian. Seeing eye dogs generally have to be much larger than Hero because they have to lead their human around, so they need a little weight on them. Also, most humans don't get a seeing eye dog until they are at least teenagers, if not older. That is because it takes extensive training by the human too, and the human needs to be able to attend the school to learn how to handle his K-9 partner!

9. What surgeries has Christian had? How many more will he have?
     February 22, 2011 - Christian had surgery to insert his feeding tube and close the skin together over his skull where the skull was missing because the skin was also missing.
     May 23rd, 2011 - Christian  had his cleft lip reconstruction surgery and his club foot repair, known as a tendon cord lengthening. Although it takes only one sentence to describe this surgery, it was by far the hardest on Christian. He was much too small to undergo such a major surgery and it nearly killed him. If I could go back and make the doctors wait, I would do it in a heartbeat.
     April 24th, 2012 - Christian has ear tubes placed for the first time and also a ABR (Auditory Brain stem Response) hearing test while he was under anesthesia. The ABR test results sh.owed that Christian has no hearing impairment.
     June 2013 - Christian has his second set of hearing tubes placed.
     November 26th, 2013 - Christian had his first palate reconstruction surgery. This surgery was performed in Indianapolis, Indiana at Riley Hospital for Children instead of at our local children's hospital. It was a huge step but so worth it! We were treated like royalty and it was apparent in Christian's recovery how well he was taken care of. Christian's hard palate was closed. This is the hard part of the roof to the mouth near the front.
     May 22nd, 2014 - Christian has his second palate reconstruction surgery at Riley Hospital for Children. This surgery was to repair the softer tissue in the roof of his mouth that goes into the back part of his throat.  This was a very scary surgery for our family. The risks for this surgery were much greater than most of his previous surgeries because of it being so far back in his mouth and throat. It carried a risk of obstructing oxygen due to swelling. Thankfully Christian did really well and had no complications.
     October 13, 2014 - Christian (and Chandler) had ear tubes placed. Christian only had a tube placed in his left ear this time. His right ear already had a tube from the last surgery. His left ear did not have a tube from the last surgery because when they went in to place the tube in his left ear, they saw that his ear drum had a tiny perforation. They can't place a tube in an ear drum that is perforated. So, now the perforation is healed up, and Christian had a tube placed in his left ear as well.

     It's hard to say exactly how many more surgeries Christian will have. There are so many factors that have to be taken into consideration, such as how well Christian heals from the previous surgery and how long it will take to recover, the amount of work that the surgeon is able to get done during a surgery (it can vary from what is planned), what things we opt for Christian to have done and what things we choose not to have done. We do know generally that there are a few surgeries that Christian will for sure have to have. Christian's palate is completely closed, however, there are a couple of small holes that will have to be closed later. This will be a comparatively small procedure. He will also have to have his top lip adjusted because it is too short. Christian will require some dental work, and also something will have to be done for his eyes, however at this point we haven't decided exactly what that will be. Christian will also have to have bone grafts in his mouth where there is missing bone due to the cleft. Several of these will have to wait until he is older because his little body is not strong enough for such big procedures. We don't have a future surgery date in mind and have decided along with his surgeon to put off any surgery for at least year for now. Christian has had his last two major operations in a six month period. That is hard on a little body. The best thing for him right now is to give his body time to rest and heal from these two big procedures so that when he has his next surgery, he will be strong and be able to handle it well.


10. What is the red part around his eyes?

     It is called conjunctiva. To describe this in a way you can understand, is it’s just like our eye lids but flipped inside out.  Due to his cleft lip going all the way up to where his eyes would have formed, his eyes also cleft.  This will be one of the many surgeries he will have in his future.  They will have to create upper/lower lids. The tissue is more sensitive than skin, but it has not been an issue for us. Please know his eyes do not hurt or bother him in any way.  He has never scratched or hurt himself.  

11. How do you protect his eyes from the sun/elements, how do you keep his eyes clean?  All great    questions:
     We keep sunglasses and hats on Christian to protect his eyes from the sun.  This is Christian’s 3rd summer and we haven’t had any issue due to the sun or wind.  We keep Christian’s eyes clean with water and a soft wash cloth.  He has working tear ducts, therefore his eyes do self clean some and stay moist. We are careful not to wipe too much because it could irritate the tissue. We also have lubricating ointment and antibiotic ointment as needed, but that is not often. 

12. Will Christian ever be able to see? Does he walk around on his own? Will he have prosthetic eyes?  This is a hard question to answer:
Will Christian ever be able to see: Wouldn't that be amazing if it was a possibility someday for Christian to see!?!?  Medical technology is evolving every day.  But, for now we have accepted and are at peace knowing Christian is blind and that there is no medical technology that can help him.  We will continue to work with him on a daily basis so that he can someday learn to read Braille, walk on a public street and flourish in our sighted world
Does he walk around on his own: When Christian enters a new room it usually takes him 20 to 30 minutes to become familiar with his surroundings. He takes everything in and memorizes things. He can learn, for example, how many steps before he’s close to anything sitting in the room. He has been known to use the edge of area rugs to navigate where he is as well. We have taught him by saying “put your hands out” when he gets close to something like a wall, TV etc. There are still times when he runs into things or trips, but he is doing really well with getting around. He is learning to use his cane, but his a typical 3 year old and doesn't always want to hold onto it. Again, there are no boundaries as to what Christian can do. Have you seen Christian drive around in his battery operated Police car? There is no stopping this little guy and the accomplishments he makes every day!
Prosthetics:  We have decided for now that making the decision of whether or not to give Christian prosthetic eyes is just something we can't answer. Since Christian has some light perception, we don't want to take that away from him. We also can't in good conscious put Christian through a dozen or more extra surgeries for the prosthetics unless he decides that he wants them. We want Christian to grow up with confidence about himself and who he is created to be, and we don't feel like we can do that if we are constantly putting him through surgeries simply to make him look better or so that other people thing he looks more normal. If Christian ever decided that he wanted to go ahead with the surgeries it would take to give him prosthetics, we would gladly support him.




13. How does Christian eat, what types of food does he eat?
Christian is fed via a feeding tube.  For those of you who are not familiar with a g-tube, here is a short explanation - A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow. Christian receives a blended diet through his tube. I cook up foods. blend them up in our Vitamix blender, and push them through Christian's feeding tube, 5 times a day. Christian used to take only formula/ The formula has all the nutrients he needs to live, but I decided that Christian would benefit greatly from having real food, so that's what I did.
      He has the feeding tube because before he had any surgery, Christian's cleft was so wide that he was simply unable to take a bottle or breastfeed. Feeding specialists tried every type of bottle they could, but nothing would work. Christian had to be able to eat, so the feeding tube was our best option to make sure that he could get the nutrition he needed.
     Since the last surgery, we have started allowing Christian to eat using his mouth. Since he has never eaten using his mouth, this is all new to him, and very scary. Many children with feeding tubes develop what is called an oral aversion, meaning they are averse to eating by mouth. Christian is making great strides in working to learn to use his mouth to eat. Right now, he will agree to eat yogurt and drink some from a sippy cup. He usually eats about a half a cup per day, which is huge for a tube fed kid! He does not like things that he has to chew or crunch or bite. He is averaging 10 to 15 ounces per day of formula by mouth as well, using his sippy cup.
     We can’t wait until he can eat completely by mouth, but for now he will continue to be fed through his g-tube.  Christian attends feeding therapy several days a week so he can learn to taste different food, feel texture and condition him on how to swallow and much later down the road to chew food.  Remember how we were just talking about our senses?  Christian’s sense of hunger doesn't come from smelling food which tells our brain we are hungry therefore to eat.  He does know when he is hungry by some of the same other cues that we have such as the hunger pangs we feel.  Lately he has been letting us know he’s hungry and will say “eat-eat”.  During the day Christian is fed every 3 hours and receives 8 ounces of blended up foods, plus 10 to 15 ounces of water, and whatever amount of formula and yogurt he agrees to eat by mouth.  
The roof of Christian's mouth before he had any surgery. A wide gaping hole. 


14. A little about Christian:  Christian is a happy, healthy and funny little three year old.  He stays busy and plays well by himself.  He is always digging to the bottom of his toy box for something new to play with.  And sometimes he just wants what Chandler is playing with!  He loves music and can sing almost every song.  His laugh is contagious and we love to laugh with him!  He loves playing outside on his swing set, playing in the pool and helping us in the garden.  He attends speech and feeding therapy every week and recently graduated from his physical therapy.  He has three cousins who live close to us that he plays with almost every day and they love each other very much.  He get super excited when his Daddy comes home, which usually means Christian get’s to wrestle with his Daddy.  And two very important people in his life are his Nana and Pa.  If there is one place he loves to visit it’s with them…ok and maybe Chuck E Cheese!

15. Can Christian talk? 
Yes and he does, and a lot, and he sings, too!  He has quite the vocabulary and it’s growing all the time! Christian's speech is very slurred because of his cleft. He has trouble pronouncing many sounds because of his cleft, but he attends speech therapy every week to help him and he will one day conquer that too!

16. How do you know when Christian is sleeping?
I get this one a lot. People ask this because, obviously, Christian can't close his eyes when he sleeps, and therefore, it can seem difficult to tell when Christian is asleep. Actually, it's not difficult at all. Christian does all the other cues when he falls asleep that you might see anyone else do. His breathing slows, his body relaxes and he gets very still and quiet. He even jumps or twitches a little bit from time to time right when he first falls asleep. Occasionally, but not often, he will even snore lightly. We can  also talk to him and if he doesn't respond, that's a good indication (but not fool proof) that he's out! :) We also have a little joke we do to people when they are around us and Christian is sleeping and they ask how we can tell. We pick his arm up, let it drop, and say "We do this. It's called the arm test. heehee"

17. How do I order a Team Christian shirt or bracelet?
I do not keep a large stock of t-shirts, simply because it's expensive. What I do is occasionally place an order for all sizes when I am running low on most everything. So, if you would like to order a shirt, you can send an email to TeamChristianShirts@gmail.com and let me know what sizes and quantities you want. If I have what you want, I will let you know and then send you a paypal invoice. As soon as that is paid, I ship out within just a couple of days. If i do not have some of the sizes you are requesting, I will let you know what I do have available and see if any of those sizes will accommodate. If i just don't have what you need, I don't hold onto the email and respond when I do get that size in, and I do that for several reasons. Sometimes, it is months later when I place a new order. I don't expect anyone to wait around and hold back funds for that amount of time for our shirts. Also, the volume of emails and messages that we receive on a daily basis simply doesn't allow me to be that organized. 

18. Is it really you answering messages or do you have admins?
I do have one admin who helps me with Christian's fan page. She is a close friend who I know personally and an honorary grandmother to Christian and Chandler. She answers MOST of the messages for me, and forwards ones to me that she finds are important for me to respond to personally. I do answer some messages myself when time allows. Unfortunately, raising two boys and making my way through law school just doesn't allow me a lot of time to answer messages. One day, I hope to make it through every message we've been sent (right now we are at over 5000 unread on the fan page and over 2000 unread on my personal Facebook page) so if you get a reply from me in 3 years, don't be surprised. However, if you ask and I say "This is Lacey," then rest assured, it really is me that you are messaging. :)

19. Where can I find your original video?
 The link to the original video is here: https://www.youtube.com/watch?v=oWCbkyR0cy0&list=UUMtSA7wWHQMgxbCeTzMCwUA

You can also subscribe to my YouTube Channel and watch tons of adorable videos of Christian from the past 3 years. I also post video blogs on a variety of topics. You can find my channel here: https://www.youtube.com/user/SuperChristiansMom/videos?shelf_id=1&sort=dd&view=0