Mommy, am I a Special Needs Child?

As we sat in the hotel room on that cold rainy day, spending some time snuggling, Bradley started telling me the story of a child he knows.

"Mommy, I know that ________ is a special needs kid."

"What do you mean? Why do you say he is special needs?" I asked trying to figure out just what Bradley was talking about.

"Well, he just told me one day. He said 'I'm special needs'" replied Bradley.

Wanting to get a better understanding, I asked, "Does he have trouble speaking? Or troubling hearing?"

To which Bradley responded, "No."

"Does he go to see Ms. __________?"

"Yes, he sees her."

There was a few moments of silence, then "Mommy, am I going to be a special needs kid?"

I went on to explain to him, truthfully, that he is/will be a special needs kid, but that in some ways we are all special. I explained to my Boo just how he was considered special needs because I always tell my kids the truth.

I doubt any parent prays to become the parent of a special needs child, whether those special needs are mental, cognitive, physical, or behavioral. For some parents, it turns to a focus on all the "can't"s and for others every small victory is a celebration. Some parents struggle daily with accepting their life and others plan to make the most of their life regardless of what they face.

But I do believe that God is at work when He chooses families who will have a special needs child. Years ago I wrote an entry in my writer's notebook and even wrote a blog about the following scripture:

John 9:1-3 As he passed by, he saw a man blind from birth. And his disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him."

You see, God has a purpose for all the life he creates. And yes, he even purposefully knits together lives that are, by our human standards, imperfect. Lives of those who are considered special needs. He does this because he has a purpose for their life, a purpose that will allow his works to be displayed. We may not know the whys and may have a difficult time accepting that such an awesome God would do something like this on purpose, but he does.

This happens to be the life that God has chosen for us and when you are a parent of a special needs child, then you, in a sense, become special needs as well. Most days I am fine with this kind of life, but I would be lying if I didn't admit there are days that I wish our normal was more like the normal of so many others. There are plenty of nights and mornings that I wish:

• the kids could just skip their shower
• we didn't have to go through a medication routine
• we could just stop anywhere, grab some food, and keep on going
• that I could just buy the cheaper, not so good for you, food in the grocery store
• that we could attend an event (birthday party, movie, etc.) without having to pack our own food.

But, all the wishing in the world doesn't change our life. Thankfully, I can turn to prayer, I can turn to God. And the best news of all, you can turn to God too. No matter the trials of your life, God wants to be there, he wants his children to call on him. Just as mother who all too soon watches her child "need" her less and less rejoices when her child comes running for comfort, for wisdom, for anything at all; our Father in Heaven wants us to do the same. He wants us to run to him to share our joy, to seek comfort, to let Him step in and take care of us. 

A Cliff Notes Kind of Life

Do you remember how you managed to get through all the texts you had to read in middle and high school? Or maybe even college? If you're like me you read them with passion because they were good and even great pieces of literature. Of course I was blessed, I got to read not only your traditional pieces, but even some more current pieces. You know...

• Hamlet
• The Great Gatsby
• Little Women
• Roll of Thunder Hear My Cry
• Great Expectations
• Things Fall Apart
• To Kill a Mockingbird
• The Scarlet Letter
• Their Eyes Were Watching God
• A Raisin in the Sun
• Beach Music (because I was lucky) 

.....and so so many more. And by the way, for anyone that reads any of my posts and is afraid of the Common Core State Standards and thinks all these texts and many more are going away, please visit www.corestandards.org, click on the ELA standards, then on the left choose Appendix B to see just a sampling of the texts at each grade level. I promise all the texts I just listed (except Beach Music) and many, many more are listed as text exemplars. But I am not going to get on my CCSS soap box, because I have something more important for all of us to think about. 

So now that you are thinking about all the texts you've read....or maybe didn't read. How did you handle reading them? I personally read the books word for word and loved any discussions that we had in class. However, I also know that there are these little yellow and black books. Yes, some of you thought about those books right away because that is how you got around not reading the text. You got the Cliff Notes version. 

Now I do not even know what the inside of a Cliff Notes book looks like, but I can only imagine...inside there some highlights on the important parts of the texts. Just enough that if you relied solely on the Cliff Notes version, you could get by. 

Now let me ask you this. Are you a Cliff Notes kind of Christian? 

As I read Beth Moore's book, "Feathers in My Nest," she poses just this question. Do you only allow yourself to know just the stories and the traditions practiced within the walls of your own church. Are you surviving on just the stories you recall from childhood. You know the ones: 

• Adam and Eve 
• The Garden of Eden
• Moses
• Jonah and the Whale
• The Birth of Jesus
• Jesus's Ministry
• The Death of Jesus

Do you live in the comfort of your own thinking and fear sharing your understanding and how God has impacted your life because you fear being wrong? Do you fear hearing what your neighbor says about God because he goes to a Presbyterian Church and you go to a Baptist Church? 

For those that read the Cliff Notes to just get by in school, do you think the Cliff Notes version of the Bible, the Cliff Notes version of a Christian life is going to be enough? You see God wants you to learn more and more about Him, about how we should be living as Christians. Sure the Cliff Notes version may feed you for a short time, but to really grow, you have to be willing to open the good book and open up your life to more. We are all continually growing and to keep feeding your spiritual self, you have to open yourself up to grow by feeding on the word, by sharing the word with others, and by being willing to become vulnerable to come to new and deeper understandings. 

So what is your Christian life like? 

Colossians 1:9-10 And so, from the day we heard, we have not ceased to pray for you, asking that you may be filled with the knowledge of his will in all spiritual wisdom and understanding, so as to walk in a manner worthy of the Lord, fully pleasing to him, bearing fruit in every good work and increasing in the knowledge of God. 

Ephesians 4:15-16 Rather, speaking the truth in love, we are to grow up in every way into him who is the head, into Christ, from whom the whole body, joined and held together by every joint with which it is equipped, when each part is working properly, makes the body grow so that it builds itself up in love. 

Should You Really Give Up Something for Lent?

As an early teen I was introduced to the idea of giving up something for Lent through my friends. It was then that I learned that I can do anything I set my mind to. Afterall, one year I gave up chocolate; one year meat; one year soda (I think). But as an adult I let the Season of Lent slip by me time and time again.

Last year, I decided to learn a little more about Lent. I came across a great article that really touched me. In the article it discussed that when we give up something, the real intent is for the sacrifice be one that prepares us and brings us closer to God. Well, that just did it for me. This act of what I now consider almost a false giving up of something, made me really think about what I would "give up".

Although a little late, I knew that one goal I had for years was to read the entire Bible. I had tried so many different ways...reading every night before bed, using the back of my Women's Devotional Bible to know just what I should read each day, etc. No matter what I tried, I would end up allowing life to get in my way. But I became determine last year during the season of Lent.

While I didn't necessarily give something up, I did prioritize my time. I was in a bad habit of waking, making lunches, and then playing Facebook games (Candy Crush for example) on my tablet while I sat at the table eating my cereal. As I sat spooning Frosted Flakes in my mouth one morning, it hit me as the connection to the article on Lent came rushing back. So sometime a few weeks after Ash Wednesday, I changed my morning routine.

While I would still make lunches first, as I sat to eat, I would open my Holy Bible app and read not only my verse for the day like I had been reading, but I would also read the Bible. You see within the app you can choose which Bible version you want and even how you want your plan to be laid out. One of the best things is, I am still at it and I am only one day behind where I should be.

The other best thing....I didn't give up this new expectation of myself on the weekends as I had often done when I would pull out my traditional hardback Bible. My tablet would follow me around and I wouldn't allow myself to do much of anything until I finished my reading for the day (I would allow eating breakfast as I read, taking care of getting Aubrey up if she woke, getting the kids food).

Recently the second great thing has started to shine through. I noticed as my kids pointed my way in church this past Sunday when there was a question or statement about reading the Bible daily. You see, my kids have caught on that no matter what, mommy reads the Bible every morning.

So as I begin to think about this year's season of Lent, I began to think in much a similar way as I did last year. As you noticed, I have been writing so many more blogs lately. Some just because I love to write and I have gotten away from it, but really, because years ago I chose the name Brandi's Lifesong for my blog, because that is what my blog's main purpose is....to share my Lifesong. So I am once again making it a priority to put Facebook games on the back burner so that I can share my LIFESONG.  Not every post will be about God, not every post will be medical related or about family, some may be about leadership, some about teaching, but whatever the focus, I always pray for God to give me the words to say and that someone who may need to "hear" those words will happen to read my blog.

So I leave you with a song and a question: Are you giving up something for Lent and is it for the right reasons or just to say you've given up something?

Rest

"Mommy, guess what the best food in Heaven is!" asked Bradley.

"I don't know. What?" I replied as we prepared for the nightly ritual of medicines, shower, and more medicines. 

"Love. All you need when you are in Heaven is love. You can have things that look like pizza or chicken or whatever, but it all is really just love."

WOW!! This part of the conversation last night was powerful and deep and well, simply profound. 

As surgery time draws closer, I can't help but think of God's timing. As it draws closer, I am amazed at the increase in sharing of his dreams that Bradley is doing. Dreams that I know make him so excited about Heaven and his relationship with our Lord and Savior. 

While the past 7 years have been a struggle at times as we learn more and more about Bradley's health issues (we didn't really have much his first year of life, just a little eczema and one hospital stay due to breathing), I have to say that God's timing is perfect. 

It is difficult from day to day as a mom knowing that your son is hurting and also trying to find that fine line between absolute pain and the pain that magnifies itself because you are tired of being in class so you seek out mom since you're in the same school. It's hard to really fully understand that your child can really, truly be bouncing down the hall one moment, complaining of dizziness and tiredness the next, and then acting as if all is right with the world a little while later. AND IT'S NOT AN ACT! If it is hard for a parent to understand, just imagine trying to understand when you don't live with it on a daily basis. 

Since the start of this school year, I have watched Bradley's health decline and that's part of my push to find out what else could be wrong and what else could we do. Since the meeting with the doctors I have watched as my baby boy becomes more exhausted each day, the skin around his eyes gets a little darker, and his pains hurt all the more. I've watched as he chooses to just drink his elemental formula instead of eat food. I can't help but think of God's timing in all this. How quick things have taken place to get Bradley to a point where we will hopefully see his body finally start to heal. While we have a long road ahead of us, I truly believe that soon my baby boy will be a totally new person. 

Right now we take each day one at a time, each moment one at a time. You see with his eosinophilic esophagitis he suffers often from reflux, nausea, stomach pain, fatigue, and pain. Couple that with his vitamin D deficiency which also add to his muscle weakness and bone pain. So we have to take it one day at a time. 

Today we took it moment by moment, including him eating his lunch quick so he could come and take a nap until his lunch time was over. A nap that just a few short months ago I may have wished for on the weekend, but now hate that he is making choices that mean he has to miss out. But he knows his body and if he is giving up recess or time to talk with friends at lunch, there isn't a doubt in my mind that his little body just needs to rest for a little while. Hopefully in the months to come he won't have to do this as often. 

So tonight, I celebrate the fact that my Bradley Boo still found time to share about God as we went through our nightly routine. I celebrate that he knows and trusts with all his being in the power of God and he finds rest in him. As Exodus 33:14 tells us "The Lord replied, My Presence will go with you, and I will give you rest." May we all be like children and trust God just as Moses did when He promised to be with us and to give us rest. It is certainly tempting to try to hang on to things when we should just trust and let go and let God. Only when we do this can we truly be at rest. 

Is There a Doctor in the House?

Romans 8:28 reminds us that "we know that all things work together for good to them that love God, to them who are called according to his purpose."

Growing up, I knew what I was going to be. Well, I knew what I told everyone I was going to be, and I insisted it had nothing to do with the money. It only had to do with working with the kids. Funny thing, as I advanced through middle and high school, clinging to the idea that I would become a pediatrician, I also knew deep down that becoming a pediatrician wasn't what I should do.

Afterall, if anyone even hinted they were going to throw up, you could count on me to have to hold it down myself. And blood....yeah, I didn't do great with my own blood, let alone the blood of strangers. Oh, and let's not forget the shots. No, I didn't do shots too well either. But somehow I convinced myself that the nurses had to do more of the "gross" work. Humpf, who was I kidding?

As fate would have it, I knew I would need to start accumulating volunteer hours and that's where I started working at the daycare at Miles Road Baptist Church. I had been babysitting since I was about 8 years old and almost 8 years later it just made sense. Besides, my mom had taken a break from banking and was the older 2 year old teacher at the daycare. Over Christmas break I started putting in my volunteer hours that turned into my first official job.

As luck would have it, we moved about 6 months later. Prior to moving one of the youth pastors at the same church where I worked throughout the week and attended services on Sunday and choir rehearsals on Wednesdays, shared Romans 8:28 with me.

Finding a job in the Greenville area was tough. Daycares weren't looking for a high schooler, no matter how mature. Besides that the hours they could offer were limited...more like substitute when someone was out. So I began making pizzas to earn my money. Now don't get me wrong the work wasn't too bad, by the time I had been at it a little less than a year, I had proven myself and as a senior in high school, I was also an assistant manager at Little Caesars. Talk about a tough move, one day working alongside classmates as their peer, then as one of their bosses. You guessed it, I had to make it known that I meant business, so the first day I was called a b****, I figured they were getting the point. Work was fairly smooth sailing after that, for the most part.

But you know what I missed the most? Working with the kids. I missed the daycare.

So the high school job played one factor in my realization that I hadn't quite chosen the right profession just yet.

Now let's take a look at my last 2 years in high school. As a junior and even early my senior year, I started paying special attention to colleges and even went to visit Lander with the idea that I would one day be going to med school. I was also determined to stay in honor choir my junior year despite being in a new school which meant a choice had to be made. I decided to take Latin instead of German 2 because afterall, doctors need to know the basics of Latin with all the terminology. Let's just say, I don't recall one part of Latin other than an unruly class. So instead of wasting another year, as a senior I took German 2.

I was also faced with another decision as a senior. Although I had signed up for Teacher Cadets, my schedule did not reflect it. Why? Because it was offered at the same time as honor choir. Within a week I had my schedule changed. Although it may sound petty, especially since as a sophomore in Charleston, I was first put in the alto section of choir (moved mid year to soprano), my choir teacher decided to move me from 2nd soprano to alto and expected me to already know how to sing my part in the National Anthem. That did it. I struggled terribly as an alto that first week and got my schedule changed.

I got to spend a wonderful year in teacher cadets working with a fifth grade class. By the end of the year, although I was never one to win popularity contests, I was nominated by my peers and awarded Teacher Cadet of the Year.

So now, factor 2...the joy of being in teacher cadets and working with those fifth graders.

A final deciding factor was my mom. Although I was always told I could be anything I wanted to be, I held tight to what my adolescent mind considered the more prestigious careers. Late one night she came in my room (or maybe it was super early one morning) to talk. Somewhere within that talk there was discussion about (well, mostly my mom talking and me listening and crying cause that's what I do) my love for children and desire to have children one day. Somewhere in that discussion was mention of teaching and the type of schedule vs that of a doctor. While I knew I could make any decision about a career and I would get support, but it was this night that now I can look back on 16 years or so later and realize that it felt like permission. Like it was okay to be a teacher and okay to not be a doctor.

You see, for years I wondered did I just give up on what I could have become and take an "easier" way. That's actually quite funny for so many reasons....teaching and easier in the same thought? LOL! Basically I wondered if I had stepped off the path God intended. But you know what? I don't know that I ever really prayed about either career, at least not the way I pray for things now. So I can't say I prayed to be led in the right direction, what I can say is divine intervention stepped in. As they say hindsight is 20/20 and I can see these three very distinct factors and can honestly say I believe these were God's way of showing me the path He had intended all along.

So here I am. In reality I've been in the classroom for 12 years now, but on paper only 11 since the year of long term subbing does not count on my certificate. Five of those years outside of the classroom working with the teachers because as fate would have it once again, I was approached and asked about a job opportunity that had no guarantees, but I had the only guarantee I needed. Immediately Romans 8:28 popped in my head. I didn't have to weigh my choices, I just had to listen and for me having a specific verse, and especially Romans 8:28 pop in my head was all that I needed, to know that God had spoken.

And you know what, until recently I planned on writing a post about God's sense of humor considering all the doctor's visits and all the medical knowledge I have to know to best care for my children. And yes, even the "gross" stuff that only as a mom I think I am able to handle. I've been thrown up on, peed on, cleaned up blood more times than I can count, learned how to wet wrap, how to give breathing treatments, and soon will learn how to feed Bradley through a feeding tube. You see God gave me an incredible mind and ability to learn, he equipped me with what he knew I was going to need in life, and then made sure I took the right path because while he knew I would need to be able to be a doctor, he also knew that the doctor I would need to be would not be one of other people's kids, it would be one that only a mother can be. He needed me in this place, in this position, to be ready for the next steps on our journey in this life.

So as you think about your own lifesong and reflect on the decisions you've made in life remember that things work together for good for those who love God and are called according to his purpose.

The Best

I, like so many people, often find myself following my own agenda and forget that I need to honestly pray and put things in God's hands. While I do not know if I truly got off the path God intended for me to follow or not, I do know that He gave us freewill and within that I truly believe that regardless of how far of course we may go, God finds a way to make the path we are on right for us....even if it is a little bumpy along the way.

When I look back on the school book my mom kept, it clearly states for each school year what I wanted to be when I grew up. In kindergarten one of those things was a teacher. Through the years I was also going to be a model, a banker, a lawyer, a child psychiatrist, and a pediatrician. The last two, I held onto throughout middle school and almost all of high school; especially the one about being a pediatrician. As a matter of fact 3/4 of the way through college, I even started checking in to what it would take for me to get in to MUSC. But those who know me, know that I am an passionate educator.

But I am more than that.

Not too long ago, Tori asked if I was ever going to be a doctor. I thought carefully about my words and explained that if I can just get a big paper called a dissertation done, then I would be a doctor, but not the kind that she thinks. I would be a doctor of education, someone who takes care of you by helping you grow in knowledge, by helping you learn. She then insisted that was no kind of doctor. In other words, mom you're crazy.

Well, I guess this idea of me being the doctor she wants me to be has stayed with her, because a few days ago I heard this; "Mom, you're the best doctor."

"What do you mean T-Belle?" I inquired.

"You're the best doctor because you help us by putting on our lotions and giving us medicine."

I thought that was the end of that until tonight. Tori started in on a conversation of what she sees me being the best at: the best cooker, the best doctor, the best mommy she knows, etc.

This does my heart proud, because she can see that someone can be more than just one thing, that one label does not describe who our whole person is. While we say a lot of "bless her hearts" and "God love her" about my T-Belle, she truly has one of those reflective and contemplating minds and will just blow you away with the depth of some of her thinking from time to time. You see, this little 5 year old girl has taken another conversation about growing up and without prompting or directing from anyone applied it to something larger.

Along with many conversations we have, Tori has mentioned that she wants to be a mom, a cheerleader, and a teacher when she grows up. I think it was teacher....she changes that last one from time to time, but consistently wants to be a mom and a cheerleader. When I told her she can be all those things, she responding with an astonished, "WHAT?! You mean I don't have to be just one." You see I wanted her to know that she really will be so much more than one label and in my mind I know that she is thinking a cheerleader who puts on a uniform to cheer in front of the crowds. But as her mom, I know that no matter what she chooses in life, she will be a cheerleader of a different sort. One who cheers on her siblings, her friends, and one day her own children.

So the fact that she came up with all of the "you're the best _________" statements to describe me, shows me that she can see how someone can be so many different things all at once.

So while I didn't become the medical doctor I once thought I would become, in the eyes of an amazing 5 year old, I am a doctor.

Now, whether I was just stubbornly insisting I was going to be a pediatrician and God stepped in by my first jobs being in daycares while I was in high school, planting that seed to want to be with children as their teacher, or whether God really did plan that I would become a pediatrician I will never know. Regardless of what my path was supposed to be and whether God intervened years ago so I would become an educator, or whether I messed with His plans and he had to work out a new path for me, I know that I would change anything for the world.

For more about the doctor I didn't become, stay tuned for my next post and look up Romans 8:28.

Valentine's Day

As I read the sweet romantic posts about couples and their first Valentine's I think back on what I recall about Valentine's Day. And then, my husband asks me over the phone, "Do you remember what we did our first Valentine's Day together?" To which I honestly reply, "No, I can remember we did go to Ruby Tuesday's one time and got that special they always do."

You see there are many, many things I can recall down to the minute detail and that drives some people (even myself) a little crazy sometimes. But Valentine's Days are not always one of them. Here are the ones I do recall....

In school, I never could wait to get home so I could tear open my Valentine's and truly get giddy about the one's given to me and what they said....especially if I really thought one of the boys who gave it was cute.

Then you get a little older and middle school brought on the hopes that you would get a flower from someone special, or a little gift from a boyfriend. Similar in high school.

But the Valentine's that hold the clearest memories for me....2001 when I got Piper around Valentine's Day. Afterall she was my first puppy that I was completely responsible for, she was so tiny, and so lovable. Hard to believe I've had her for 13 years now and her age is really showing as her fur has gradually turned white around the muzzle and ears, her hearing isn't what it used to be, neither is her sight, but she will still snuggle up.

The next most memorable would be in 2009. We were still learning just how bad Bradley's food allergies really were and since we never really saw much change in avoiding milk or milk products, we were a little lax in allowing certain food items from time to time. Little did we know that part of the reason for not seeing changes was because he had more allergies to foods that we were first led to believe.

You see Valentines 2009, Bradley was allowed M&Ms. A food he had always loved, but we took away from him except for once in a while. Late that night I went in to check on his screams to find a bloody mess as he had torn through his legs to the point they looked like parts had been through a meat grinder.

This Valentine's we have even more answers and prepare ourselves for our new normal that will enter our home in a few short weeks.

So, while it is wonderful to celebrate Valentine's Day, and I can be a stickler for remembering details, there are a few that I let slip by including how Mark and I spent our first Valentine's Day. Guess I'm kinda lucky that he can go with the flow and we just celebrate things whenever:-)

Now as I write this, I must say I may be able to recall this Valentine's, but not over anything super romantic. Instead it will be because the week leading up to it included a winter storm that had us "stuck" in Charleston for an extra day after Bradley's appointments, missing 3 days of school, and now as I type a minor earthquake. I haven't felt an earthquake since living in Charleston. The ones I felt then were about like this one....shaking for a few seconds. In middle school I thought a tree had fallen, in high school I thought someone was shaking the desk, and now I honestly yelled, "Mark, are you washing clothes?" To which he replied, "No, what the he** was that? I think it was an earthquake." Then Facebook exploded with comments.

So for all your romantics at heart, I hope you enjoyed your Valentine's Day. For everyone, let us always remember "faith, hope, and love are some good things He gave us, but the greatest is LOVE."

The Angels Battle

For those that missed it, part one of this dream retelling by Bradley can be found here: http://brandislifesong.blogspot.com/2014/01/colorful-angels.html

The next evening, Bradley shared with me his newest dream about the angels. His words were short and to the point. "Mom, guess what?" "What?" I inquired. "I dreamed about the angels again last night, and you know what? The Hell's Angels broke through and started destroying things. But don't worry. Heaven's Angels won and threw all the bad ones back to Hell." He didn't elaborate on any of the details, just explained in his understanding of his dream that God wins.

 **As an aside, to my knowledge as his mom and Sunday school teacher, he hasn't really heard the book of Revelations. As a matter of fact most of what he has learned of the Bible consists of the basic stories you learn growing up from the Old Testament and mostly from the gospels in the New Testament. He has always been interested in the end of the world and concerned about World War 3 so we do have some discussions, but it has been a couple of years since those discussions.