Christian Taylor Buchanan

Christian Taylor Buchanan

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





Monday, July 14, 2014

Don't Judge Me! An Encouragement to Self Examination

"Don't judge" has been thrown around so much lately and to be honest, it erks me. Don't misunderstand me here. I am not saying that we should look down and snarl our noses at others for making different (or even bad) choices than what we agree with. Our job is to love others.  But this whole "don't judge" thing is getting out of control. Y'all know I am a Christ follower and I am all about some Jesus and the Woman at the Well "Neither do I condemn you!" stuff!  (That's in John Chapter 8 if you want to read it. Great story!) So don't misunderstand me. Hear me out.

First, people are constantly getting offended because they see judgment where none is intended. I see even the most honest and benignba j statements being turned into something that they are not, especially on Facebook. If you can read one single facebook post about someone and decide that you know their heart's intentions and what they are thinking, then maybe you are guilty of that thing you hate, judging. And if all it takes is one facebook post for you to decide someone's character and whether or not you like them, maybe the problem isn't the post or the poster. Maybe it's your own heart issue. 

Second, someone isn't "wrong" for stating an opinion that doesn't line up with yours, especially if you are posting you opinion on a social forum where the point is to garner comments and opinions from others. Just because someone has a different opinion than you doesn't automatically mean they are judging you. Have you stopped to consider that no one on this earth is going to agree with you 100% on everything? If you dislike everyone who doesn't completely agree with you on all points, you will dislike the whole world. I will add, there are some issues that don't stand to be waivered on, of couse. But you will never convince anyone else of your opinion if all you can say is "Stop judging me! God is my judge!" If you want to share your opinion and convince others of it, the best thing you can do is present your opinion clearly and concisely, back up your reasoning, and show respect and love for others. 

Third, when I care about someone, I let them know when they are making a bad choice because I DON'T WANT THEM TO MAKE A BAD CHOICE BECAUSE I CARE ABOUT THEM. Is that "judging?" Maybe. The line is a thin one. But as long as there is no malice or rudeness, is that really relevant? My husband got so mad at me one time because I told him I didn't want him to buy a certain truck. He thought I was being ridiculous and that I just wanted him to be stuck with the car he had and that I didn't want him to be happy. He bought the truck anyways, and now he regrets it because he has had issue after issue with it and cant afford to get out of it. Was I judging his decision? Yep, because he was making a poor one and I was trying to protect him from his own poor decision. Was I judging his poor decision? You bet cha. And now he wishes he had heeded my judgment. Stop to consider for a second that when WE are the ones in the middle of making a decision, we can get blinded. My husband was blinded to the problems that truck had because he wanted a truck so bad. I could see those problems when he couldn't. It isn't always a bad thing to at least listen to opposing opinions. In fact, i think it's SMART to listen to opposing opinions. You will either consider things you didn't consider before and realize you were wrong, or you will know even more that what you believe is right for you because you weighed the pros and cons. 

Fourth, judging does have its place. Hear me out. Do i judge my children's behavior when they act up? Yes. Yes i do. and when I judge that they are acting a fool, they get disciplined. And when i judge that they are behaving, they get praised. Because that's my job as their mom to judge their behavior in order to help them to make good choices in behavior. The other night i was in downtown nashville at midnight. Me and two female friend were in a dark parking lot and as we approached our car, a man was standing behind it whom I presumed to be homeless. He immedately came toward us when he saw us and started asking for money. I looked around and saw that there was no one else around but me and my girlfriends. I never said a word to him, but reached into my purse and put my hand on the grip of my handgun and left it there until the man walked away and we got safely into our car. I judged the man.  If he had decided to attack me or one of my friends, he would've had the advantage of being larger than us, in a dark alley, and in an area where no else was around to help us. So i made a judgment call, and one that could have saved our lives if the man had been looking to attack someone. i do it every day. I judge whether or not someone is trustworthy enough to babysit my kids. What kind of mother would i be if i did not? I judge whether or not a doctor is capable of performing surgery on Christian. I judge whether or not I want to be friends with someone. What kind of person would i be if I constantly let abusive people manipulate and take advantage of me? 

Fifth, are there some people who are just judgmental jerks? Yep. and Facebook is a breeding ground for them. Trust me. If anyone knows about them, I do. Remember, I am the mom of that cute little boy who some people look at a single picture of and determine that he should be dead. I have literally had strangers see a single picture of Christian on Facebook and say "If i saw that kid walking down the street, I would murder him." They judge that Christian's life isn't worth living based on one single picture. But most of you who know him know how awesome he is and how loved he is and how great his quality of life is. But if facebook has taught me anything, it's that MOST people are not judgmental jerks. We all have tendencies to jump to conclusions, we all make assumptions sometimes that are wrong and we end up eating our words later, but most people honestly are nice people who are just flawed human being like all the rest of us. We say things out of turn or we stick our foot in our mouth later and realize that we were wrong. Lord knows I have!

 See, i don't think it's "judgement" that we hate so much. I think what we hate is being challenged, being called on to defend our stance because sometimes our beliefs have holes in them. I think we hate when someone points out our faults. Yeah, it doesn't feel good. But if we ever want to grow and learn from those things, sometimes it's necessary to be called out. I want to be that person who, when someone judges me unfairly, I can say, "That's ok, I forgive you." But I also want to be that person who does't always cry out "don't judge me" when someone else expresses an opposing opinion or judges me fairly. (Except when I'm using it in a joke, which I do often. i.e. i'm eating chocolate for the 6th time today. Don't judge me.) I want to learn from their words and consider things I have not considered before. I want to grow from their words and be challenged when someone judges me correctly and finds fault. 

This post is not meant to "judge" anyone, but rather to encourage all of us to be the best person that we can be, to love each other just a little more, and to look for the good in things instead of the bad! So, don't judge me! ;P


Saturday, June 28, 2014

Where My Trust Is Without Borders

Many of you who follow my blog or Facebook page know just how hard Christian's last surgery was for me. It was surgery #6, and our second palate surgery, so it's not like we were encountering new territory, but the risks were higher this time, and for some reason, things just sat uneasy with me. The night before his surgery I laid beside his bed all night. I cried some, I dozed off some, and sometimes I would send messages to one of my friends who was awake. I remember telling her "This is so unfair. He doesn't deserve to have to go through this" and I remember as I typed those words, tears fell uncontrollably. It was one of the few times that I honestly couldn't control my sobs.

In the weeks and days before surgery, my mind was gone. At least three times specifically, I can remember driving through Murfreesboro, where I drive to at least twice a week, most of the time more often than that, and where I have been driving to since I was 16 years old. And as I would be driving to wherever I was headed, I would suddenly snap to myself and realize that I wasn't headed the right direction, or that I had no idea how I had gotten to that side of town, or I had completely forgotten where I was headed to begin with. The day of surgery, while in the waiting room, I got ridiculously sick. As many hospital stays and procedures and surgeries as we've been through, that was the first time I ended up hugging the toilet over it. It hit me hard.

Friends and family said encouraging things and kept me uplifted, let me know they were praying for Christian and offered to help in any way they could, and those things really did keep me going. But no words could possibly ease my anxieties. It was so hard that it was beyond what I could handle as a person, as a mother.

When all was said and done, and the surgery ended up being a breeze for all of us (if surgery can ever be a breeze at all), we all breathed a huge sigh of relief and literally were shouting for joy in the waiting room when the surgeon came in to tell us how it went. The surgery actually went much better than we could have ever hoped or imagined and Christian did so well that you would have thought the surgery was just minor and routine. It's almost unexplainable how things went as well as they did. (Although I can totally explain it (: )

I've said all that to lead into what I wanted to talk about in this post. Before, during, and after surgery I heard more times than I can count, "Don't worry!" "Don't be afraid!" Not that I fault anyone for telling me these things! It's just one of those things you say to someone about to face something like what we faced. But each time I heard it, I would think "Sorry! Too late! I am terrified!" Sometimes I would even think "That's easier said than done there friend!" But I would never say what I was thinking to someone because I understood their sentiments were heartfelt and genuine and I wholeheartedly appreciated the encouragement! But once surgery was all said and done, I even heard "See there! You worried for nothing!" "Oh you of little faith!" And again, this was from people who genuinely care and love us, and who prayed for us, and they mean nothing harmful by it at all! It didn't upset me in the least. But it did give me something to think about.

This post is for anyone who is afraid: afraid of tomorrow, afraid of yesterday, afraid of how they're going to make ends meet this month, afraid of how they're doing as a parent, afraid that their marriage is crumbling, afraid that they may lose their job, afraid of losing a loved one, afraid of handing their child over to a surgeon, afraid of making the wrong choice, afraid of the mistakes they've made in the past, afraid of the diagnosis they just got. I can relate.

"Fear not" is the most repeated command in the Bible. When I found that out, I felt just a little guilty at how afraid I was over this surgery. It made me really analyse myself. Do I really trust God that little? Am I so lacking in faith that I was throwing up in a waiting room bathroom? Was I THAT scared? The answer is yes. Terrified isn't even the appropriate word to describe the fear I felt. Oh, me of little faith.

Now, not only did I feel scared, but now I also felt guilty. But God (through a good friend) helped open my eyes to something I hadn't considered before.

*"Fear not" God knows how afraid we are. Why do you think He repeated himself so often in the Bible on this topic? I'm positive He knew that we needed to hear it that many times, a constant reminder. He knew that we would feel and experience fear. In fact, he prepared for it!

*"For you created my inmost being" I don't like when people tell me I should or should not feel a certain way. In fact, I don't like the whole "invalidating feelings" thing in general. God created me an emotional being (sometimes overly emotional but hey, don't judge! (: ). He expects me to control and reign in my emotions and to work to align them with His will, but He most definitely does not expect me to deny them or not feel them at all.

*Cast your anxieties on Him"  Why would He tell me to cast my anxieties on Him if he expects me not to have anxieties? God knew that my anxieties would exist, and He prepared for it.

You see, God knows exactly how terrified I was that day, and I highly doubt it upset Him. In fact, I think anyone who was facing what I faced and claimed that they weren't afraid would be accused of lying. I don't think God was sitting there saying "Lacey! I told you 'Fear not' and here you are literally wretching with fear?!?!?" And I don't think God was shaking His head and saying "Oh ye of little faith." For you see, it's in those times of pure terror, where my body is shaking with fear, I can't quiet my sobs, and I can barely speak or catch my breathe, that my faith is made stronger, and my fear is laid at the feet of Christ. We have come to think, as believers, that when we follow Christ, it has to look glamorous and elegant, or we must be doing something wrong. We are in a battle and we have to come out guns blazing, chest puffed out, and victory bells sounding. When we face the fiery furnace we're suppose to shout for joy, and we're suppose to run towards the lion's den eager to lay down with those man eating lions.....says who?

I have found in my 12 years of following Christ, that I am a mess. I am anything but glamorous and elegant. I am dirt-covered, sin stained, and filthy. I am no poster child for winning people over to the "attractive life" of Christ-follower. I am living proof that God can take the most insignificant things and turn them into something invaluable. I am evidence that God can take something ugly and make it beautiful. My life is confirmation that God can take weakness and turn it into strength.

You see, in that moment when I handed Christian over to that nurse on surgery day, that moment that I had been dreading for months, and I literally couldn't catch my breath, I wasn't lacking faith because I was afraid. On the contrary, my faith was strongest at that moment.  I handed Christian over and watched that nurse take him away, not knowing if I'd ever see him again, and I didn't chase after her screaming and begging her not to take him. I waited anxiously for 4 hours while Christian was in surgery, but my faith was not small because I was physically sick. On the contrary, evidence of God's victorious right hand was most evident because I stayed in that waiting room and waited to hear what the outcome would be, vomit and all.

I knew that whatever happened that day, I would face it. I knew what outcome I hoped and prayed for, but I also knew that God was in control and I was not. His strength was made perfect in my weakness because I knew that whatever outcome there was, I would STILL trust Him and serve Him. Whatever happened that day, His grace was sufficient for me.

The song "Oceans" by Hillsong has stuck with me so much for the last six months and through these last two big surgeries. It has been a reflection to me of where God has led me over the last three years.
"Keep my eyes above the waves." I don't need to be in control. I don't need to be able to speak. I don't need to be able to breathe. I just need to be able to keep my eyes on Christ. 
"Take me deeper than my feet could ever wander." My own flesh would never take me this far on my own. It's scary. It's dark and cold. I've never been that far before. I don't know what to expect. I could drown. God has allowed me to be taken further than I ever would have chosen to go on my own. He has allowed situations to happen in my life where I had no choices left but trust Him or don't. 
"Your sovereign hand will be my guide where feet may fail and fear surrounds me." He has allowed me to face things where my own strength was never enough to get through it, where my own strength failed. I have gone through things where I could not possibly navigate my own way through them, and fear enveloped me like a blanket.

"Where my trust is without borders, and my faith will be made stronger." 
And I have watched miracles occur, more than once, right before my very eyes.

Courage isn't always the superhero swooping in to save the day or the jumping in front of a bullet (although those certainly qualify.) Sometimes courage is that quiet voice that never gives up. Sometimes courage is closing your eyes, squeezing that victorious right hand as hard as you can, taking that leap and holding on for dear life. Sometimes courage is speaking up even when your voice shakes. Courage isn't the absence of fear. Courage is being afraid but taking that step forward anyways.

So, What are you afraid of? Oh ye of little faith. Don't fear, you are more courageous than you realize. The Lord Your God is with you wherever you go. He is your strength and shield.




Friday, May 23, 2014

Miracle at 705 Riley Drive

Miracles still happen. I know because I am raising one. They are not just something in the Bible that happened long ago. They are not just wishes we make when we blow out our birthday candles (although that's lots of fun to do.)



Miracles still happen. I know because today I witnessed one. Today was surgery number 6 for my sweet little Christian. I have been dreading it. It never gets easier and each time is always a little different, so there is only so much to be said for "preparing." How do you prepare yourself to place your entire life into the hands of a stranger in scrubs? How do you prepare yourself to see the love of your life scared, confused, and in pain, all while you are totally helpless to make it stop? That's kind of what it's like each time. And although I always spend the several days before surgery crying profusely and constantly in prayer, and although nothing I do makes it easier to bear when the time comes, each time I witness a miracle.

Today was probably one of the most amazing miracles so far. It's so amazing what God will do sometimes. I've been praying for Christian and the doctors for over a month now. I asked God to give the doctors the skills and wisdom to perform the surgery, I even asked Him to give them a good nights rest the night before surgery so they could have a clear mind that day. For Christian, I prayed especially for good pain control, that he have peace before and after surgery, and honestly, just that I would get to hold him again once this was all over.

But God did so much more.

Christian's cleft palate, before any surgery, was 18mm wide. That number doesn't mean much to anyone who isn't a plastic surgeon until you compare it with other cleft palates. What most surgeons would consider a "hard to close" cleft palate is around 10 to 12mm wide. Christian's is almost double that. Comparably, that's a huge amount of space to fill in the roof of his mouth.

When he went in today, Dr. Flores, Christian's surgeon, explained to us that he couldn't give us exact details about what would happen during surgery because it would all depend on Christian's tissue and muscles once he got into his mouth. The goal was to close Christian's soft palate, and he gave us a few examples of how that might play out once surgery began. What Dr. Flores thought would probably happen is that he would pull Christian's palate together from the right and the left, but there wouldn't be enough tissue there to reach all the way across. So, to fill in that gap, he would do what is called a pharyngeal flap where he would cut tissue from Christian's throat and, leaving it attached to the throat at one point, flap it toward the palate and use that tissue to cover the hole. Although pharyngeal flaps are  not new, combining one with a cleft palate closure is. Dr. Flores had never performed this operation before. In fact, he created this procedure just for Christian. Although there are always risks with surgery, that creates a bigger risk. The flap that would be created would cause some swelling in his throat that otherwise wouldn't happen. Swelling in the throat can mean difficulty breathing. This was my biggest fear for this surgery, that Christian would have trouble breathing on his own.

That is why I especially put out requests for prayer for this surgery. I will be honest when I say that I was scared out of my mind this time around. I'm scared every time, but this time was more intense. This time I knew that there was a greater chance (however small) that A`when I handed Christian over to the nurse that I might never see him again. I know that is always a risk you take when there is surgery, but this time the risk was so much more real. This time there were sobs instead of just silent tears.  And as I handed him over, I told him how much I love him, knowing that it could be my very last chance to say it to him.

It's funny to me to hear people say I'm so strong, because in moments like these, I don't feel the least bit strong. My body literally shakes with fear, my legs will barely carry my weight, my voice cracks and breaks and I basically have to force the words out. The night before surgery, I laid in the floor next to Christian's bed and cried most of the night because I was too scared to leave his side. I think sometimes people picture me standing courageously by Christian's hospital bed as we face these trials, when really I spent yesterday getting sick in the waiting room bathroom during our 3 and a half hour wait. I was even afraid to ask God for the best surgery outcome possible because I was just desperate for Christian to make it through and didn't want to push my luck.

But God knew what lay ahead for Christian long before it ever happened, and His plans are good and His plans are not persuaded by my fears. Thank God that He understands my weakness and when I struggle with my faith, He isn't angry with me. He just restores and strengthens my faith instead.

When Dr. Flores began operating on Christian's palate, he found that the gap in Christian's soft palate had narrowed. Not by a ton, but in Christian's case, every millimeter counts. Dr. Flores wasn't able to explain exactly how it happened, but we all agreed: We don't care how it happened, we're just happy it did. So basically because the gap in Christian's palate had narrowed, Dr. Flores was able to forego the pharyngeal flap. He was able to pull Christian's palate together from the left and right and reach all the way to the middle just like he would in a patient with a typical cleft palate. THAT, my friends, is a miracle.

We've all agreed that we aren't sure "medically" how it happened that Christian's palate narrowed some on it's own, but we all know the truth. God is faithful and we are thankfully. We witnessed a miracle today at 705 Riley Drive. It isn't the first we've seen and I'm sure it won't be the last.






Wednesday, December 18, 2013

Today I Failed As a Parent

Yes, you read that title correctly. Today I failed as a parent. Being a mom, being a good mom, has always just come naturally to me. I have a wonderful mom who really influenced that nurturing instinct in me. There's a saying that a child can only give what they receive, and I must say I received a lot of affection and nurturing and love in my childhood, and so it's always come easy to me to give affection and to nurture and love. And I feel that so far, in my 2 years and 10 months of mothering, I've done a pretty good job.

But today, I really feel like a failure as a parent. Three weeks and 1 day after Christian's first palate reconstruction, I failed him. Three weeks and one day after Christian underwent major reconstructive surgery on his palate, I messed up big time. Day one into being released from wearing his arm restraints, I allowed Christian to go play in his brother's room unsupervised. This wasn't an issue or problem before surgery because our house is small and I can hear him at all times, there's nothing in there for him to get into except a toy box, and I peek in often. However, after surgery, we were on high alert. There was to be nothing, absolutely nothing in Christian's mouth for fear of puncturing or opening up his palate. The arm restraints were to prevent him from putting anything in his mouth himself by stopping his elbows from bending, but he didn't have to wear them anymore after yesterday.

Today Christian sat in his brother's room, not being watched, without his arm restraints, and it happened. He punctured a hole in his palate. I'm not sure how or on what, I just know it's there, and I am sick. My immediate reaction of "Oh God, no!" scared Christian a little bit. I guess he thought he was in trouble. As I frantically begged him to open his mouth and let me see, he became more scared. And there it was. His beautifully reconstructed palate punctured. My heart sank, I burst into tears, and my logical self began thinking what course of action needed to be taken.

There was no blood, and no safety concern for Christian, so I decided just to call his doctors office and leave a message. Realizing that it was too late in the day to get a call back from them (they are an hour ahead of me) I called Christian's Mimi who has been to all his appointments with me in Indianapolis and asked her what I should do next. She instructed me to call one of the surgeons who had operated on Christian, Dr. Costa, and email Dr. Flores, the main surgeon on his case. Dr. Costa called me back and, at least, put my mind at ease in assuring me that we probably don't need to rush to Indianapolis for emergency surgery.

I could absolutely kick myself for letting it happen. Why didn't I just make him play in the living room? Why didn't I just leave the arm restraints on him? Ugh!!!!!!!! I am so mad at myself. Today I have failed Christian. I know he won't remember this incident, but I know it will stay with me.

Monday, August 19, 2013

Why I Won't Allow My Toddler to Have Cosmetic Surgery




It strikes me as odd that I have been asked many, many times if I will have Christian undergo cosmetic surgery to repair his birth defect. Apparently, it's not an odd question to most people, because I could not tell you how many times I've been asked. The number literally lurks somewhere close to 500, if I had to guess. I am not AT ALL offended by the question, and I enjoy explaining my answer, but still, I find it odd to be asked.

Imagine your beautiful child that you simply adore. Her little button nose, those ears he got from his daddy, that little smile with that one not-so-straight tooth right up front, those freckles that dot her cheeks, that bright red hair, or that jet black hair. As you imagine that, I am sure you have a few emotions that go along with it: adoration, admiration, love. You probably think that your child is the prettiest thing you've laid eyes on. Well, when I look at my child, with tissue in the place of where eyes should be, and a crooked smile that never stops smiling, those long eyelashes he inherited from me, the three scars on his face that remind me of the journey we've been on, that head full of beautiful, dirty blonde hair, and a nose that is now slightly off because of surgery, I feel exactly the same way. And why wouldn't I? Before he was born, I dreamed of this child, I imagined myself holding him and kissing his sweet little cheeks. I prayed for this child, so fervently, that God would allow him to live and me to raise him. I loved this child, with a passion that I have yet to be able to adequately put into words. I carried this child inside of my body, a bond that is indescribable.
Our perfectly imperfect family


So let me present this question to you about your beautiful child, and then explain a few things. There will be people who don't think your perfect child is as perfect as you do. What if those people suggested to you to get your child cosmetic surgery? What if they said, "Are you going to allow doctors to fix that incredibly large nose?" or "You know doctors can remove those freckles with just a few procedures" or "If you get cosmetic surgery for your child, she will fit in better and others won't pick on her." Devastating. Unreal. Who would really allow their young child (or even teenage child) to undergo cosmetic surgery to change their features, the features that you happen to adore in them? Heck, I can remember the controversy that went on a few years ago about a new trend of teenagers getting plastic or cosmetic surgery to "fit in" better and what an uproar it caused. It's just not an acceptable thing to do.

Although Christian looks different than most people, that also hold true for me. I've had to ask myself, and answer the question, "Am I really willing to let my child undergo cosmetic or plastic surgery simply so he can "look better" or "fit in?"" And my answer is no. Now, listen to this as coming from a mother. I say that because I had a plastic surgeon at Vanderbilt COMPLETELY misinterpret this statement once. He had suggested to me to put Christian through an 8 hour neurosurgery,(Warning: this part gets a little graphic) where he would cut Christian's head open from one ear to the other, pull the skin back, cut the skull open, move the skull bone down, and reattach it with metal screws and wires that would be in Christian's head for the rest of his life. And the purpose of this MAJOR surgery? Are you ready for this? To lower his right brow bone and make his face more symmetrical. I was flabbergasted. The first thing I could manage to say was "Do you really think the ends justify the means here? Eight hour neurosurgery to just drop his brow bone?" And the doctor was shocked at my question, and didn't really answer it. He fumbled and stumbled and danced around my question, but never backed down that Christian needed this surgery. With the voice of a shaky, young mother who was so unsure about so many things, I tried to explain to the doctor why I couldn't allow that surgery, and why something so cosmetic could not possibly justify an eight hour neurosurgery. About a year later, when we were at Vanderbilt for a different specialty, a nurse was reading off Christian's chart to me. She got to the plastic surgery part, and she read "Mother refuses any more surgeries for her child." My mouth dropped. I immediately stopped her and said "THAT IS NOT TRUE!!!!!! Why would he write that?!?" And then it hit me. He completely misunderstood what I had said about Christian and cosmetic surgery.

So, don't misunderstand me on this. Does Christian need surgery? Yes. Will I allow him to have those necessary surgeries? Absolutely!!!! Do I want him to have unnecessary surgery? Absolutely not.

And here's why:
Christian will have many reconstructive surgeries over his lifetime. But there is a difference between reconstructive surgery and cosmetic surgery. His hard and soft palate were affected by his birth defect, and he will need to have that closed so that he can eat and talk properly. He will also have eye lids formed so that he can open and close his eyes, for protection purposes. He will have lots of surgery to correct his birth defect., and by lots, I mean several dozen  That is the short answer for what he will have done, and we will allow him to have these surgeries.

We, as a family, have decided, however, not to put Christian through lots of purely cosmetic surgeries to correct his facial features for several reasons. For one, we don't want to put Christian through more surgeries then he will already have to undergo. Surgery means that Christian will be in pain, scared, away from the comforts of home, missing out on being a child, friends, toys, fun. To add to the number of surgeries he will have just so he can "look better" seems illogical.

And it seems illogical because we think he is beautiful and perfect just as he is. So, we asked ourselves, if we really think he's beautiful, does it make sense to put him through tons of cosmetic surgery? We feel strongly about helping Christian to grow up KNOWING that he is perfect just the way he is, keeping his self esteem high, and teaching him to love himself. And we feel that we could not tell him those things and have him believe them if we do not prove that we believe them. And if we're constantly letting doctors perform surgery on him to "fix the way he looks," how can we prove to him that we believe he's perfect?

Now, that's not to say that when he gets older, if he decides that he wants the surgeries that we would say no. We would support him 100%. But for us, putting him through painful and scary procedures just so that the world will think he looks better is just simply against all logic and reason!


The truth is, no one is "perfect." We all have our own flaws. The secret isn't to get them fixed or hide them, it's to learn to love those imperfect things about yourself. The truth is also that there is no such thing as "normal." Who gets to decide what normal is, anyways? Ask two different people and you will get two completely different answers. In a world that screams "Fit in," I want Christian to know that it's okay to stand out!

Sunday, August 18, 2013

Is This Really What Our Society is Becoming?


Is this really what our society is becoming? I had to ask myself the question when I came across this photo on my Facebook feed today. As I read, I could feel my face getting red. My heart just broke for the mother who had to open this piece of trash, and my temper flared at the thought of someone being so nasty and full of hate. This letter, so cowardly addressed with a made up signature instead of a real name, simply makes me sick. I can just see the letter's author, tiptoeing onto this mom's front porch, stashing the note, and running away like the coward she is, before anyone could see her. 

I have a pretty good sized social media following, so I do want to address the coward who wrote that, on the off chance she sees this. But, I won't waste too much space, as she just isn't worth it. To her I say this: You need some serious emotional, and possibly mental, help if you can harbor so much hate that you feel the need or desire to attack a child with a diminished mental capacity or his family. Please seek help so that you can stop spreading the blatantly apparent emotional disease that's eating you alive from the inside.

But that's not really the reason I wanted to address this. Most of you who will read this will do so because you adore my sweet child who has a very physically evident disability. I seriously doubt that anyone who thinks the way the author of that letter does will take the time to open my blog and read it. But you guys are the ones I really wanted to share with.

When I asked myself the question "Is this really what our society is becoming" after reading this letter, I was disheartened. But immediately I began thinking of all the times that I have been attacked because of Christian's disability, and how quickly so many people came to my defense, and I remembered the force and the passion with which you have stood up for me and my family. I also thought about the 100,000+ followers Christian has, and how you celebrate every tiny achievement and every huge milestone that Christian accomplished, right along beside me, as if he was a member of your very own family. I thought of the gifts he has received and the friends we have gotten the privilege to met over the last few years. And in less time than it took to read that nasty letter, I answered my own question.

And the answer is a resounding "NO!" This is NOT what our society is becoming. This is NOT representative of the majority of our population. I believe most people would agree, that letter, that mindset, and that attitude possessed by that person are NOT okay. In fact, it's down right repulsive, sick, and straight from hell. And I think many of you would agree with me when I say that I question the mental capacity of anyone who would or could find it within themselves to author and deliver such a vile piece of garbage to another human being, let alone even think it.

I take pride in the fact that people come to me with questions about disabilities stuff. I love when people ask me questions. Some of my favorites have to be "How can I teach my children to accept people who have disabilities?" and "What is a non-offensive way to approach someone who is differently abled?" Okay, so I paraphrased there, but you get the idea. When people ask me questions like that, not only do I enjoy sharing my opinions and insights into the subject matter, but it gives me hope that there are people out there who genuinely care, who would rather wrap in love, the mama and child that were the subject of this letter, then to ever cause them any heartache.

My hope is that that letter is shared all over social media, partly because I hope that this, and a LOT of other messages of disgust, get back around to the author. But I also hope that as we share that image, we can all rally together in agreement that things like that are NOT okay, and that we can let our voices be heard in saying out loud "That is not acceptable." And hopefully one day, letters like that won't be written.

I've said this before and I will end with it because it bears repeating. In some societies, those with special needs are revered so much that people will bow down when they enter a room. It is believed that they are put on the earth not to learn like the rest of us, but to teach. Oh that WE could be such a society!!!!!!!!!!

Follow up: This letter is now making the news, and is causing outrage across the country, as it should! Read this story about the letter here: http://www.citynews.ca/2013/08/18/family-in-shock-after-hate-letter-targets-teen-with-autism/