On February 18th, 2011, our lives were changed forever when our son Christian Taylor Buchanan entered the world. He was born with a bilateral cleft palate and lip and almost completely blind. This blog is the story of his life, the joys we share, the challenges we encounter, and the amazing and trying journey ahead of our family!
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 instead of going in later. Because I am there early as well, I offered to start helping place the attendance and offering cards in the backs of the chairs before service. It doesn’t take long at all, but the guy that was doing it does a lot for our church, so I was happy to take one thing off of him, even if it’s tiny. While Chris works with the band to get the sound right, Christian and I spend the rest of our time visiting with people and working on physical therapy. Yep, right there at church! There are some stairs leading up to the stage where the band plays and Christian LOVES listening to the band, so he crawls all the way to the stage, and those stairs are the ones he learned to climb stairs on! I showed him every week how to do it, and after a few weeks, he started doing it on his own. We also practice cruising across the rows of chairs, and walking up and down the aisles. Because the band is playing during all of this, Christian is as happy as he can and just jams out! Once per month, I also do a story time with the children’s class. I prepare props and fun ways to tell the story for that week, and then get to spend that service with some really sweet kids!
So after church, we usually grab some lunch or cook something and Christian naps. When that’s all said and done, it’s generally around 2pm. If Christian isn’t awake yet, Chris and I use that time to relax, watch TV, and just spend some time together. If Christian is up, we usually go outside if the weather is nice, and let Christian play in the yard while we clean vehicles, or do yard work, or something like that. I also do a lot of laundry on Sundays because I’m home for more than a few hours at a time. If the weather isn’ nice we usually work on some project inside such as painting or cleaning up a certain room that needs it, or something like that. We usually end the evening by grabbing a quick dinner or warming up left overs and then going to my parents house to visit with them.
When we get home we do our bedtime routines and get settled for the night. Once Christian goes to bed, I try to get in some reading for school. I usually get to sleep around 11 or 11:30.
Then when Monday rolls around, we are not ready for the weekend to be over! We all get up about 6:30 or 7 and I help get Chris out the door for work, packing lunch, gathering clothes or whatever he may need for the day. He leaves about 7:45 and it’s just me and C. Christian usually eats around 8am, and then I grab me a bite of breakfast or some coffee. I let Christian play in his toy area while I put up all the clothes that I washed the day before. I also run all my errands on Mondays. Today, for example, it was trip to the post office to pick up a package and to the bank to make a payment on my school loan. We ran into a good friend today who also has a visually impaired child, so we chatted for a little while with her as well. We got home and Christian played in his toy corner some more while I picked up the house from the weekend. Our love seat turns into a catch all, so I clean that off every Monday and make sure the house is tidy. If there is any laundry left, I finish it up as well. I get all the dishes washed that we didn’t get to on the weekend, and I usually pick one big project to tackle, such as vacuuming under all the couch cushions, or pulling all the furniture out and vacuuming behind it, or cleaning the tub, or whatever the next big project on my list may be.
By this time, Christian is starting to get tired, so I usually give him a bath and get him settled in for his naptime. While he sleeps, I have a few options. I usually work on homework during this time, but occasionally, I will use this time to pay bills, make phone calls that can’t be made when there’s a toddler hollering in the background, or work on my blog, like now! 🙂
Once Christian gets up, it’s somewhere between 1:30 and 2:30. Once he gets up, I start that night’s dinner and then we go to work on physical therapy. We work on everything that I can think of that he needs to be working on, such as walking with his walker, cruising between two objects, or standing. We usually spend about an hour and a half doing that. After that I finish up dinner and put some in a tupperware bowl for me to take for my dinner. I get my school bags together, change Christian’s diaper and clothes and make sure he’s fed to make sure he needs as little as possible when I leave him with his Nana and Papa. Then I change my clothes and make sure I look decent, and we head out. I drop Christian off at my parents’ house and I head to school. It’s about an hour to an hour and a half drive to my school, so leaving between 4:30 and 5 gives me enough cushion to make it there with a few minutes to get to the classroom and get settled in. Class gets out at 10pm, and I am usually home around 11, because traffic is lighter that late at night. During class on Mondays, I study Constitutional law and then Evidence, both of which require lots of concentration and constant note taking to make sure I do well on the tests. We get a ten minute break between classes, so I usually call and check on Christian and make sure Chris made it home from work safely.
Chris gets off work at 5 and is usually home around 5:45. If he goes to the gym after work, he gets home around 8. My mom keeps Christian either way, so Chris eats whatever dinner I’ve prepared and does any cleaning left on the house so I don’t have to worry about it when I get home.
My mom brings Christian to my house around 7:30 or 8pm, and gets him into his pajamas and ready for bed. He usually goes to bed between 9 and 10, but occasionally it’s a little bit later! My mom usually leaves around 9 and Chris gets Christian on to sleep. When I get home, I usually just go straight to bed because I am whipped!
Tuesdays are therapy day for us. The first part of the morning is the same as Monday, we get Chris off to work and do all that, but after he leaves, we get ready to go as well. We leave the house around 9:30 and get to Special Kids around 10am for physical therapy. We go straight from PT to speech therapy at 11. Speech therapy lasts until 12 and by this time Christian is exhausted. I usually have to head straight home to get him to bed for a nap. He usually sleeps until between 1:30 and 2:30, and I use that time to study. After he gets up, we do the same thing as Mondays. We work on therapies, eat lunch, I cook dinner, and we get ready for me to go to school and Christian to go to his Nana and Papa’s.
On Tuesday nights at school, the class time is the same, but my classes are Properties, and Rememedies and Restitution. Remedies is one of the harder classes I’ve taken, so it takes all I’ve got to keep up with the teacher in that class. I also work a table on Tuesday nights before class, so I have to be at school about 30 minutes earlier than usual. Basically, when I graduate, I will have to take the BAR Exam to be able to practice law. The table I work at is for a company that sells a bar review exam course. The course costs somewhere around $3,000, but if you take it, you are way more likely to pass the bar. So, I decided on my first night of school that I couldn’t afford it. lol. But an opportunity arose where I could work at the table for 30 minutes once per week, and I wouldn’t have to pay for the course. I could not pass up that opportunity, so that’s what I do. I basically just answer questions for other students, take payments, and help people get enrolled to take the review course.
I get home around 11pm on Tuesdays as well. Christian is already asleep by this time, and I just put away my school bags and head to bed!
Wednesdays start out just the same as every other weekday. We usually have Early Intervention come by on Wednesdays, sometimes at 9, sometimes at 12. She comes for an hour and we discuss any new advancements with Christian’s development, new ideas that I can be using to help Christian, or things that I may be concerned about and how we can address them. If we have to go to Children’s Hospital for any appointments, I generally try to schedule them for Wednesdays because the traffic isn’t as bad as Mondays or Fridays, and it’s the only other day we don’t have therapy.
We don’t have too many appointments, so Wednesdays go pretty much just like any other weekday. I clean in the mornings, Christian gets a bath, and I study while Christian naps and then we work on therapies. I also do my coupon organizing on Wednesdays if time permits. It usually takes about an hour to clip, bind, and print my coupons for the next shopping trip, but it saves us a TON of money, so it’s worth it to help make ends meet!
I don’t cook on Wednesdays because instead of school, we go to a thing with our church called Lifegroup. It’s where several families meet at someone’s house and everyone brings one part of the meal. Chris gets home around 5:45, and then we load up the car, take the trash to the road, (because it’s picked up early the next morning and we get home late), and head to Lifegroup. We get to Lifegroup around 6:30. We eat dinner, talk, and do a bible study lesson. Then we clean up, pack up, and head home. We usually get home around 9 and I already have C in his pjs. I usually get things ready for the next day, pick up anything that needs to be, and get ready for bed myself. On Wednesdays I usually let Christian lay in the bed with me and Chris before he goes to sleep. He rolls around and plays and climbs all over us and giggles before he falls asleep. I take him to his bed, and then I study until I pass out as well.
Thursdays are just like any other weekday except we have more therapy. I cook some dinner that Chris can warm up, we do some therapies before Christian’s nap time, I study during C’s nap, and I clean up around the house or do whatever needs to get done that day. I try to get Christian to nap early so he won’t be tired for therapies. If I am successful, and we have time, I run to the grocery store before therapy and grab what I can. I do a little couponing during that time too.
Music therapy starts at 3 and lasts for 30 minutes. Music therapy is through Bolton Music Therapy, not Special Kids. So once that’s over, we head straight to Special Kids for feeding therapy at 4. Feeding Therapy lasts until 4:45 or so, depending on Christian’s tolerance for it that day. Now, I have to leave Woodbury no later than 5:15 to make it to school on time, so getting Christian back to Woodbury and then making it to school on time is impossible because Woodbury and Murfreesboro are about 30 minutes from each other. Even though Chris would usually get off at 5 and could meet me in Murfreesboro to pick Christian up, he works late on Thursdays, until 7, so that’s not an option. I was late to the first 5 classes because of that. But a wonderful friend who lives in Murfreesboro (where C’s therapies are) offered to watch him for me! So I drop Christian off with her right after therapy and head on to school.
Chris picks Christian up after he gets off work, and brings him home. I get lucky on Thursday nights with school. I only have one class, Civil Procedure. It lasts from 6:30 to 8:10, and I usually end up getting home around 9pm. My mom usually comes over to check on Christian on Thursday evenings before I get home. Christian is usually not asleep when I get home, but ocassionally he is. If he isn’t, I get him to sleep. After that, I usually just study until I pass out on Thursday nights as well.
Fridays are our relax day! We don’t schedule anything on Fridays unless we absolutely have to, because it’s the only day we get to stay home! Our routine during the day is the same, working with C on therapy stuff, naps, lunch, homework, cleaning, etc. BUT, on Fridays I cook a more extravagant meal, because all week long I’ve had to cook frozen lasagna, or crockpot soups. So, I usually try to go all out on Fridays and cook something that takes a little longer but is way more yummy! I also cook a lot more because I invite my parents over on Friday evenings to eat dinner. It’s a little known secret that my mom hates to cook (just kidding, she’ll tell anyone how much she despises it lol.) And she is usually worn out from watching Christian so much for me through the week, so this is the least I can do for her! After they leave, we usually just spend the evening at home doing family time. Occasionally we will do something crazy, like go to the mall or to a friends house if we feel the need to get out of the house for a little while. 🙂
I dont’ typically do homework on Friday nights after Christain goes to bed, as my reward for making it through another week! lol
Saturdays at the Buchanan home are CRAZY!!!!!!! We usually have at least one pre-arranged engagement for the day. Now, mind you, it’s always something fun, such as dinner with my aunt and uncle who drive an hour to come down to see Christian and his cousins, or take Christian to the pool or the pumpkin patch. But we almost always have something planned. When we do have some free time on Saturdays, Chris and I like to get projects done that we don’t have time for during the week. Just recently we decided to turn our den into our bedroom because there is more living space in the den and the den wasn’t being used to it’s full potential. We spent two weekends moving furniture and selling some old furniture from the den that we didn’t need and cleaning and getting everything set back up. One saturday I spent 3 or 4 hours going through Christian’s clothes and getting out his fall and winter stuff and putting away his summer things.
There is always one unplanned thing as well that pops up on Saturdays. A call from a friend wanting us to come do something, or a last minute plan that sounds fun!
We usually end the evening by visiting my parents again. My parents are amazing people, whom Christian and I adore. They are not elderly, but they are 54 and 63. I know they won’t be around forever. Everytime I’m tired and don’t feel like visiting them, I remember that. I watched my grandparents go from independent living when I was little, to moving to a nursing home and eventually passing away when I was a teenager. That was hard to experience, and I know that some day I will have to watch my parents go through that process as well. So I refuse to waste time doing unimportant things when I can be with them and let Christian be with them. Some of my fondest childhood memories include my grandparents. I loved them and still do so very much. I don’t want to deprive Christian of that sweet relationship that he could have with his grandparents. We see my parents a lot, and that’s how I plan on keeping it.
If there is some down time on Saturdays, I try to do some studying there too, because what I do through the week is nowhere near enough. It usually isn’t the best studying because there is usually a rowdy kid and a husband who need attention mixed in with my studying time! But I don’t mind!
So we usually end our Saturdays just the same as any other. We do our bedtime routines and off to sleep we go, getting ready for Sunday!
So there you go, just wash, rinse, and repeat, and you have our basic routine for every week.
Now let me just mention all the things that I deal with pretty much weekly that I didn’t mention in there because they don’t fall withing a routine time.
*Insurance and the mess that it is – I’ve been through 2 appeals and working on a 3rd with Christian’s insurance to get him into Special Kids nursing program two days a week between therapies. The insurance says that he doesn’t qualify, but we know that isn’t true because he was getting 54 hours a week of nursing when I was still working. I am constantly having to fight them over something that they don’t want to give Christian. Social Security Disability is the same. Christian is 19 months old and has never gotten a full SSI check. In fact, I think he’s probably received less than $1,000 total from SSI in his entire life. It’s a constant fight with them as well to keep him on it when we know he should be.
*Nationwide Children’s Hospital – I speak with someone from NCH almost weekly on Christian’s next surgeries. I have spoken a lot with the actual doctors on their plan of care and exactly what the next surgeries will entail. I have been back and forth with the financial department trying to make the financial aspect of it work out. I also get a lot of mail from them that all hospitals send out after you have appointments. Exam synopses, or letters from the doctor explaining their findings, etc. That doesn’t include the entire week we took to actually fly out and visit.
*Other medical issues – I have to speak with Christian’s medical supply company regularly, and keep up with what he is getting low on and when. We have a box of medical supplies delivered to the house once a month. We still go to Children’s for several specialites, such as gastro for him Mic-Key button. I have to keep up with paperwork, appointments, doctors, procedures, etc from there. Christian’s other medical issues require lots of time and paperwork!
*All things vision – Everything we do with Christian has to take into consideration his vision impairment. I don’t just change his clothes. I tell him what I’m doing, I encourage him to help me by pushing his arms through the sleeves. We discuss his dirty diaper and giggle because it’s shewy. I ask him questions. I take his hands and show him how to brush his hair. I make him lift his arms before I pick him up. I encourage him to use words to tell me what he wants. We talk about where we’re going when we’re in the car. We sing songs to pass the time he’s stuck in a car seat because he can’t look out the window and be entertained. It’s constant. It’s second nature to me now, but it’s never not going on. I use every single opportunity I can to teach Christian something about whatever it is we’re doing. Because he can’t watch me and learn. He has to touch and hear about it.
*Friends – My friends that are not FB exclusive,and who were here before FB, still like to be friends with me. lol. Although I don’t get to see or talk to any of them as much as I’d like, I do try take some time for them. One of my best friends is getting married in 2 weeks. We’ve been on the phone a lot lately discussing wedding plans, and ordering my bridesmaid dress, and deciding where to have the bridal shower. Another really good friend is having a baby is a few months. I’ve been buying for her little girl, and checking on her a lot. I have another firiend who has a little boy with a vision impairment. We talk often about developmental progress, resources, swapping ideas, National Federation for the Blind, and what it’s like to be the mama to a child who is blind. She is so awesome to talk to. There are way more, but these are just some examples.
*Facebook – Christian’s fan page has somewhere around 34,500 fans, and my facebook profile has 5,000 friends and around 12,500 subscribers. That’s over 50,000 people to one me. I have somewhere around 1300 unread messages on the fan page right now because I just can’t get to them. I get around 20 messages per day on my personal FB profile. I answer messages and posts while Christian is in therapy, while waiting in line at the grocery store, in class when the teacher is on a topic that isn’t important for taking notes, while I eat lunch, while I’m rocking Christian at night, before I fall asleep at night. That’s literally when I get a chance to do those things, as you can see from my post above.
*Marriage – Some of you may know that my marriage has struggled since Christian was born. The weight of a special needs child is hard on a marriage. The divorce rate of parents of special needs kids is 80%. That’s 20% above the already ridiculously high national average. Chris and I have recognized our struggles, and are working toward meaningful changes that will help our relationship and our whole family. It takes time, and effort, and prioritizing. We make it a point to purposefully work on our relatioship daily. And sometimes that means putting down the phone and just being present with each other.
*E-mails and speaking engagements – Because of Christian’s popularity, I do speaking engagements and interviews often. One week last month, I spoke 3 seperate times. It is time consuming to write, perfect, and practice speeches. I want them to be good. I also still do a lot of interviews. Many are now by phone or e-mail, but still take time to sit down and answer. I had someone come to my house this past Saturday for 3 hours just to ask questions and shadow us. I get some sort of fan or interview email at least once per day. Finding the time to respond to all of these is hard.
And finally, I want to end with this. This is for everyone who has come to know us since that video went viral in May, everyone who has sent us gifts, kind messages, donations, love, and friendship. I realize that I am not good at responding to messages or posts, or emails. I realize that sometimes you may send me a long message and my response is one or two sentences, or you may post on my wall and I only “like” the post and not comment. I also realize that I rarely reach out to you guys unless you reach out to me first. And sometimes, I never do get to respond to you. But I want you guys to know that I think about you all daily. I think about all the people who love Christian so much and who can’t wait to hear how he’s doing. I think about you guys when I put on a shirt that one of you bought him, or when we talk about a state where “hey, so and so lives there!”Or when Christian is playing with a toy that someone sent, it makes me think of them! I never stop thinking about all the amazing people who take their time to send us well wishes and love, who take their hard earned money to send Christian gifts, who are ready to defend my son no matter what against anyone who wants to be mean!
The fact that I can’t respond to everyone well bothers me immensely! I wish I had the time to answer everyone and respond to everything! To express my gratitude adequately!
My life would not the be same if you were not all in it, and neither would Christian’s. I cannot wait until he’s old enough to understand. I am going to explain to him all about the people all over the world who love him. I can’t wait to read him some of the sweet messages you have sent, or let him open a package he got in the mail and explain to him that you all love him just because he is Christian!!!!The fact is, I will simply never be able to express my appreciate to each and every one of you adequately. But none the less, I want you all to know how very sincerely I love each and everyone one of you.