Leading the Blind

For anyone who follows us on Facebook, you have probably, at one time or another, seen someone make a rude or hateful comment on a photo I've posted of Christian. It has been happening pretty much since he was born. In fact, much of the reason that I decided to make the video that went viral was because of all the negative comments that we would receive, whether through social media or face to face when we were out in public with Christian. And I have to say, I am tired of it. I sometimes find myself unable to deal with a hateful comment on a particular day, or exhausted with the idea of checking my email and finding another rude comment left on my YouTube Channel. So this blog is my outlet to vent my frustrations and share my wisdom on the matter. I consider myself a professional at handling bullying, after all, considering all the bullying I've dealt with over the last few years. At first, the comments hurt. I remember the day that I first took Christian out in in public...

It was recently brought to my attention that because I'm "famous" I treat others like nothing but "fans." As long as we get help, admiraton, whatever it is we are seeking, then I don't bother with actual relationships. So, I decided to write this blog about my life. I know that anyone who follows us on Facebook has an idea of what I do on a weekly basis, but I wanted to break it down for everyone. I think it will be interesting for myself to see a breakdown, plus, I have something on my heart I want to share with you guys! So, let's start with Sunday. We get up around 7am and begin getting ready for church. We eat breakfast, take baths, etc. etc, and leave the house by 8:45am. Church doesn't start until 10:15, but we get to church at 9, because Chris runs the sound board, so he has to be there for the band's rehersal to make sure that everything sounds right before worship services begin. To save on gas, Christian and I just ride along with him...

For those of you who have been following our story for some time, you are probably very familiar with my distaste for children's Hospital; and for those of you who are not, you can go back down this blog a little ways and read some of the horror stories about our experiences there. I was convinced back last year sometime that I could not take Christian back there, at least not to the plastic surgery department, and I'll explain that in a minute. We still see gastroenterology there, because hey, how can you mess up replacing a Mic-Key button? We still see the Neonatal Follow-up Clinic because they are really nice, knowledgeable, and willing to help get Christian services when he needs them. But as far as plastic surgery goes - No way, Jose'! You can't make me take him back, I won't do, I refuse, NUH-UH! So let me explain why. Back last year when Christian was about 4 months old, we visited plastics for a follow up to a CT Scan. The scan was just to double check a...

We have recently been looking into some different hospitals for Christian so I thought I would update everyone and let y'all know what is going on! As many of you know, we had had tons of bad experiences with  Children's Hospital, from a broken leg, to doctors who didn't show up for appointments, to 3 to 4 hour waits for simple follow ups, to busted mouths, to incorrect diagnoses and prescriptions, just to name a few. One of the major things that happened that really pushed me to start looking for a new hospital began when Christian was about 4 months old. He had his cleft lip repair surgery when he was 3 months old, and on one of the incisions, it looked like he might have had an infection under the skin. This was on the part of his head where the skull is missing, next to his right eye, so I was concerned that it was so close to his brain. We took Christian to the ER on Saturday evening and were there until around 3am. The doctors who saw us told us that it didn't...

Christian is a happy little boy who loves life. His favorite things are his Mama, his Nana, swimming, and music. He loves playing musical instruments, especially piano, guitar and drums, although as of yet he is still learning melody! :) Christian was born with a birth defect called Tessier cleft lip and palate. This birth defect has only about 50 documented cases in the world. Christian's classification of Tessier cleft caused his eyes to cleft as well as his mouth, which means that he is blind. Christian has had 3 surgeries so far and faces dozens more to repair his cleft. He has defeated all the odds and defied what doctors have said over and over. We were told that Christian wouldn't live once he was born. Not only did he live, he is a thriving and healthy little boy. We were told that Christian would be mentally impaired as well. Christian has proven to be smarter than many kids his age who have sight. Christian has never let his disability define who he is, or allow ...

As you may have seen in a recent post, I have been asked to be on the Board of Directors for the Cleft Lip & Palate Foundation of Smiles. I am so honored to accept this position and I can't wait to get the ball rolling and dive in! I thought it might be appropriate to let everyone know a little more about the Cleft Lip & Palate Foundation of Smiles. I thought it might also be a great way to reach out to all my cleft and craniofacial families that I have met in the past month!!!! The Cleft Lip & Palate Foundation of Smiles began in 2009, and their mission is "to educate and bring awareness to others around the world whose lives are being touched by cleft lip and/ or palate and other Craniofacial anomalies by providing Support, Education, Advocacy, and Research." My title on the board will be National Newsletter Coordinator. I have been brain storming lately on a way to keep all my cleft and craniofacial families connected and reach out to them. So as the cr...

I love writing in my blog, and even more I love that people are reading about my family and enjoying and being inspired! Someone asked me to elaborate on Christian's surgeries, which  led into me realizing that a lot of people don't know much about Christian's actual condition. "Cleft lip and palate" isn't really an accurate word to describe it after all. So I would like to explain all this as best I can in hopes that you guys can understand just what's going on inside that crazy little fella, and even more so, how blessed we are. So let's talk about the vision impairment first because I've already talked about it in my last post, but there are still a few questions. Christian's condition is known as "micropthalmia" and was caused by his cleft. I won't go into all the details because you can read them in my last post, but what I didn't mention in my last post was a treatment. What doctors have told us is that there is no ...