What is Affirmation in Leckieville?

I woke up not feeling the best but knowing I have so much on my plate that I have to temporarily not acknowledge what my body is saying because there is tons to be done.  Today, tomorrow, and so forth.  Since I have awoken, I have been in constant prayer.  I have days like these and I love them because I can feel God standing right here with me.  Obviously He has something to tell me today.  It might have been that He has been whispering it to me for some time and I have not been listening.  It might have been that I heard wrong.  Or.....it might be that there is no time to test my ability to hear softly so I need a "fast forward" on what He has to say.

I immediately start to prepare dinner in the crockpot.  Still praying.  At this moment, praying over our dinner.  Praying there is enough for everyone, that is nutritious for our family, and (weird I know) but praying that the food multiplies in the event that God invites guests to our house tonight.  LOL....I know, I said weird...but He has a way of throwing people into our lives that are so unexpected.  So, I prepare....

I start to pray for my family, our health, my children especially.  Constant conversation with God.  Not really knowing if He is talking back to me but I am definitely giving him an ear full of what's on my heart.  I pray this morning and many other times in the past that my children really know who God is.  They know what He can do for them and that they reach out to Him on a daily basis. Recently I have been praying that I am able to release my anger in what is going on in my world, Leckieville.  I smile when you see me but really inside I am so angry.  I project my anger quietly.  Mostly at God and sometimes physically making myself ill by allowing the stress, worry, and emotions take over my health.  Friends and family look at me as an example because I look on the outside to handle all of this craziness with such grace and peace.  That burden lies on my heart because at times I feel like a failure with these awesome opportunities to use my trials and shout out my testimony.  My mind tells me that I am some what two-faced for being so positive on the outside and so angry on the inside. 

Well....today....God shouts out to me....a different story!

I am just about to finish cutting my last carrot for the crockpot.  By now I have laundry going, I have drank my cup of coffee, started cleaning the kitchen and been in prayer for nearly 2 hours.  Channer awakens.  So peaceful this morning....very unusual for him.  He is normally a train running on high speed in the mornings from the minute he puts his feet on the ground.  I feel his arm reach around my back and he says "Good Morning Mom".  I return the hug and love and remind him that it is time to start his morning therapy.  No argument....SURPRISING!  He buckles into his Vest and proceeds to take all the necessary steps for therapy.  But while doing this, he calmly looks up at me.  When Channer does this.....(anything so calm and peaceful), I get butterflies.  This calm look.....I have seen before.  I know what is coming.  He speaks.  

This time he tells me a story of something that happened at school.  He rarely shares events with me...either out of lack of interest or just can't remember.  This story goes like this...

"Mom, there is this boy at school.  He has some real anger issues.  He came to me and asked "Hey Channer, how can I help myself not feel this way....do you know?"  Channer says....Do you know God?  The boy says, "No, I don't".  Instead of making things complicated, Channer shows him how to fold his hands together.  He says bring them close to your heart and bow your head.  "When you pray to God, tell him all your problems, He listens".  "He takes away your fears and he can take away your anger too."

"Here I am! I stand at the door and knock. If anyone hears my voice and opens the door, I will come in and eat with him, and he with me." (Revelation 3:20)

af·fir·ma·tion

–noun

1.

the act or an instance of affirming;  state of being affirmed.

2.

the assertion that something exists or is true.

3.

something that is affirmed;  a statement or proposition that is declared to be true.

4.

confirmation or ratification of the truth or validity of a prior judgment, decision, etc.

We are LITERAL'S!

lit·er·al /ˈlɪtərəl/ Show Spelled

–adjective

1.

in accordance with, involving, or being the primary or strict meaning of the word or words; not figurative or metaphorical: the literal meaning of a word.

2.

following the words of the original very closely and exactly: a literal translation of Goethe.

3.

true to fact; not exaggerated; actual or factual: a literal description of conditions.

4.

being actually such, without exaggeration or inaccuracy: the literal extermination of a city.

5.

(of persons) tending to construe words in the strict sense or in an unimaginative way; matter-of-fact; prosaic.

 

There are days when I sit back and look at my son and see a clear description of why I am on this earth.  It is like having my very own personal trainer to the gates of Heaven.  I always say that I am a work in progress.  My teacher (Channer) is very successful in teaching me how to look at life differently and appreciate the small things.  He teaches me as if I were blind (literally) to use my five senses and sometimes that sixth sense that hides quietly behind my initial thoughts.  

 

For example, he is determined to break me of a bad habit of using the word "crap".  Yes, this is a vice of mine and when I take a second look, as Channer often forces me, this is not a nice word.  As I am piling Channer's belongings into my hands to walk inside the school building....he throws his gator-aide bottle on top of my already heavy pile as he walks with little to nothing in his hands.  I fuss "I can't hold all of your CRAP Channer, you could help mom out a little!".  He turns to me with his very serious face and says "That gator-aide is not crap mom, it's hydration".  In the last couple of months he makes me think twice as I say that word because he clearly see's that the literal meaning of that nasty adjective could be put to better use.  He would prefer I say feces or hydration in the two instances where he has called me out on the way I chose my words.  Just as God has intended us to literally look at his Word and believe the "literal" meaning. 

 

My son is a walking light of God.  I am very blessed and some would say lucky to have a walking encyclopedia by my side at all times.  Literally speaking.  Sometimes I get clouded and try to find reasons, explanations, and get analytical to make myself feel better while going through trying times. All the while, the answers are right here in my face.  I am to stop trying so hard to make these "little things"  (literally speaking) that God has given me to endure and focus on the bigger picture.  

 

“It is impossible to get exhausted in work for God. We get exhausted because we try to do God’s work in our own way.”

 Oswald Chamber

 

 

I Hurt My Toe....

Mornings are hectic in Leckieville.  Do you ever have those moments when you say something out loud in the "hussle and bussle" of things and then realize you just had a "light bulb" moment?  

I have Channer in the shower and moving like a slug.  Jenna can't figure out what to wear because looking her best is what makes her day.  While I am standing over a hot steamy shower, helping Channer wash his hair, I hear Jenna crying.  She is my emotional child (my mom always said that I would get payback one day for all the tears I shed as a child) so I just ignored her whimpering (assuming it was over a pair of jeans or a skirt).  After all, Channer needed his hair washed and we were going to be late to school, once again. 

I go into Jenna's room to assist her and by this time she had layed down on the bed and given up on getting dressed for school.  I asked "What is wrong dear"?  She replied "I hurt my toe on the ladder"!  She was dramatically boo-hooing all over the place.  I stood her up, put both arms around her, hugged her tightly and said "Jenna, it will be ok.  Let's get dressed and keep going".  She looked up and told me how much it hurt and it wasn't possible to get dressed at this point and that her day had been ruined.  All before 7AM.  As precious minutes were flying by, I found myself getting frustrated and firmly said "Jenna, just because you hurt your toe doesn't mean that life stops! We have to keep going!".............WOW! What advice did I just throw at my daughter? We have to keep going?  It's not ok to fall down on the bed and say that I give up? Is that not the pot calling the kettle black???

Yesterday, I escaped from reality for about 2 minutes in the make-up isle of Walgreens because I am ready to throw in the towel.  I am falling apart because Channer wasn't feeling well and I didn't know why.  I had dropped him off at school but got a call from the CF clinic at MUSC that I needed to bring him in right away.  He was hypoglycemic.  I knew something was wrong but I didn't know what.  I reach out to my friends immediately on Facebook.  This is what I call therapy on the fast track.  I obviously can't find time in my days to see a counselor and fear that he/she may truly deem my a lunatic so the next best thing are my friends at my fingertips.  My 2 minutes were up and it was time to purchase the tissue and make-up so that I could throw myself together in the car and no one would have to know that I, me, Carolyn Leckie, just lost my marbles in front of several strangers in my very small town.  

In my world of what we call Leckieville, there is no real time to grieve, no real time to be sad.  I tell my friends that I wish I could just schedule my meltdowns so they fit in my day.  Instead, when I have 2 minutes in Walgreens, I seize the opportunity.   Point being, "Just because you hurt your toe doesn't mean that life stops! We have to keep going!"

Our story in Facebook posts....

To get caught up, I am just blogging a few of my FB post to catch everyone up...

Channer had a sweat test (testing for Cystic Fibrosis).  A shot in the dark if you would have asked me but they were worried about several signs, the worst being "failure to thrive".  Channer was weighing in at 71 pounds at 13 years old. The first test came back "Borderline High" so we were asked to come back for a second test to make sure.

November 4, 2010 

10:08 a.m. - As I sit here in this lonely cold MUSC waiting room, holding onto the last straw of hope of good news, I am thankful for the kind lady behind the desk that remembers my name & face every time we come in. She is the bright smiled lady that wisphers peace my way, letting me know that I CAN do this. No matter what the docs tell us this time, WE CAN do this. All made possible by her simply smile.

3:36 p.m. -  MUSC just called with results. It has been confirmed. It is Cystic Fibrosis :( My poor little man.

9:12 p.m. -  Thank you for all of the encouraging words and prayers. It's been one heck of a day. A lot to digest in one day. We have already received a call from our "nurse manager". As devastating as this news is, we are thankful to possibly have an answer to things that have gone unexplained for so many years. Back to MUSC tomorrow for further testing. This round of testing will tell us what genes are affected. Please continue to pray for our family. Channer is a very happy young man with a special sparkle. I won't let anything take that from him!"

November 5, 2010

7:35 a.m. - Just woke up and had that moment when I jumped up in the bed thinking I had a REALLY bad dream {sniffle, tear, sniffle}. Nope! Not a dream. Now I will go take a shower and cry really hard so my kids can't hear me. Then I will pull myself together and get back on track.

8:01 a.m. -  I should be a pro at this by now. Just yesterday I told someone to fake it till to you make it and I haven't even been taking my own advice.

11:26 a.m. - When the doctor explained that the blood work was to find the correct mutation and that there were 1500 of them, Channer says "Well, I hope they find that there are 1501 and name the new one after me!" We all laughed so hard. He has been all smiles. I know he doesn't fully understand all of this but he just keeps saying how excited he is to finally know what causes him to be so skinny. He is looking forward to the "fix". 

November 6, 2010

7:42 a.m. -Nights R the hardest when laying awake & there is not a single sound N the house. Nothing 2 distract my mind from thinking about all the "what is's & whens". My ♥ heart ♥ says we will fight this just like everything else, my mind races & takes reason away. Soon I find myself wiping the tears again. I could have never imagined @ 22 yrs old how much I could possibly love this little guy.

November 7, 2010

10:16 a.m. - Going to church. Will be praying for my family...our son especially. I usually push right through things and tackle them head on. My heart is so broken. If you see me smiling, it's fake

November 10, 2010

7:30 a.m. - Jenna says in the car this morning with a tear in her eye "Mom, I am really glad that I have a family that believes in God because it makes it so much easier on me since I love God so much." Needless to say.....I then had tears in my eyes. She gets me everytime!

December 13, 2010

11:11 a.m. - The docs just took Channer back for his tests today. Magic gas that smells like Dr. Pepper? LOL, he loved it. Praying they find what they need to help us out. A little upset that they insist we test Jenna for CF :( I can't even imagine the possibility of both children having this. {sniffle sniffle blow blow}

December 14, 2010

1:45 a.m. -  I can't even begin to tell you all of the amazing things that are happening in Leckieville today. I'll start off with an email from Channer's teacher "Channer just finished the math portion of the MAP test. In the spring (probably march) he scored a 174 and I just read the test to him and he scored a 208!" Over 30 point increase!

December 28, 2010

7:46 a.m. - Took Channer today for yet another full day of testing for the CF clinic. You know it is never good when your cell rings before you can ever get home, the caller ID brightly lit up with MUSC on it. Am I aloud to be tired? I hate that feeling in the pit of my stomach. I need cupcakes, no...chocolate...or how about CHOCOLATE cupcakes!

December 20, 2010

8:22 p.m. - I cannot believe that my baby is going to be 14 this week! Wow, 14 years ago I was blessed with a beautiful blonde hair, blue eyed, Angel. He has taught me so much...especially how to see happiness and feel joy...no matter what!

January 10, 2011

2:58 p.m. - I just watched the Temple Grandin movie with my children. Wow, what an amazing story!! Amazing to see my children seeing ourselves in that movie and to see how they too have gifts that make them "Different but NOT less". {sniffle sniffle} A must see, opens your eyes, gift a gentle reminder of our purpose and how each door we open is just the begining of another opportunity to make a difference.

January 12, 2011

2:02 p.m. - Went to a routine appointment for Channer...oh wait a minute...nothing in Leckieville is routine. Found out that he needs sinus surgery in the morning and they will be doing a cilairy biopsy as well. Jenna had already been scheduled for her CF sweat test in the morning for the same time. I am becoming a pro at reading the doctors faces before they tell me bad news.

January 13, 2011

1:43 p.m. - Channer is out of surgery. Poor guys had a rough day. Mommy will take good care of him. Now just waiting for the phone to ring on results for Jenna's sweat test this morning. Ring phone...RING!

4:50 p.m. - Jenna's results are in! They are normal!! Praise God!

January 19, 2011

6:28 p.m. - Each day is precious. Tell your family how much you love them, remind your kids how special there are to you, and never take a minute for granted. Tomorrow may not come, its not promised. "Live, Laugh, Love"

February 10, 2011

1:59 p.m. - Not so good email from Channer's school. Soon after, not so good phone call. UGH, boo, sad face, tear :( Days like this are so hard. I know each day is so hard for him and he is so bright, lights up a room with his humor, can't just one thing be easy for him? For us? Is that too much to ask?? He puts a new meaning to "creative parenting". I'm running on empty.

February 11, 2011

6:27 a.m. - Today is going to be a good day! Woke up to great news. Also, I am so proud of Jenna, she gets breakfast and lunch served to her because she passed both benchmark tests. Channer has a new outlook on responsibility after last nights family meeting. I know he will do great today!

February 16, 2011

9:12 a.m. - My kids didn't sleep last night, by 8:30 a.m. I have laundry going from my niece wetting the bed and I have cleaned a bathroom from my son clogging the toilet and somehow managing to allow it to explode EVERYWHERE. All the while, Jenna stands there tapping her foot, saying "This is gonna be a long day". Ya Think??!!!
4:15 p.m. - Was walking into yet another weekly visit to MUSC with Channer as my phone rang. The Cystic Fibrosis clinic found the mutation. The girl softly says, "I'm sorry to have to tell you..." IF I HAD A DIME FOR EVERYTIME... Next thursday we officially start treatment. It is no surprise to me that he has such a rare form that it took this long to narrow it down. Only in Leckieville.

February 19, 2011

12:29 p.m. - I say "Channer!!! Please eat, just shovel that crap in!!" (for those of you that don't know, getting him to eat is a fight ever day). He says back to me "Mom, a nice way to say crap is.... feces...." He had the straightest face and was very serious. How could I not laugh?

February 20, 2011

8:25 a.m. - In the last couple of years, the bottom has fallen out of my life. Staying in Christ, I find myself coming out twice as strong today. The doors were opened for God to restore double back to me. Even when it looks impossible, keep that smile. God is in control! I am in a happy place. Back breaks will not keep me down. Get ready and watch Him continue his work in me :)

February 22, 2011

8:08 a.m. - At my wits end & need guidance with how to handle the behaviors that are being presented by my extremely intelligent 14 year old special needs child. 2 hour rages are exhausting. How can I effectively & rightfully punish him with him not understanding cause and effect? While his words present intelligence & understanding, his actions clearly show he is clueless. What form of punishment is effective & appropriate?

February 23, 2011

9:42 p.m. - Not looking forward to the sun rising. That will mean it will soon be time for me to sit at that long table in the 3rd floor conference room at MUSC with a team of doctors to review the start of our CF treatments. A conference room is throwing me for a loop. Why not an exam room? Praying for strength.

February 24, 2011

6:17 a.m. - Yesterday I sat with the neuropsychologist to review progress if any over the last two years. Call me crazy but I took his comment as an insult but after sleeping on it, I now realize that it was the best compliment ever! After telling him our journey to Duke, Yale, and Therapies (paid for or self created), all in hopes of regaining skills & finding answers to the bomb shell diagnosis he dropped in my lap on my birthday. He looks at me & says "Wow, you have done more than I even knew existed, you can probably teach me a few things". I was upset about this comment because I had looked to him as guidance & I instead I had to go fishing in the dark. This morning I realized, how amazing it is that I did this. All on my own. Maybe I will TEACH him a few things!!
1:43 p.m. - Just got home from MUSC, feeling so very nauseous, almost had to excuse myself from the room for a minute. I know the right things to "think" and "say" but I need to be REAL right now, just for a minute. I feel so dumb! How could I have not known that my son had this disease? Why didn't I see the signs? How could I have been so stupid not to educate myself exactly as to what this disease is or does. What now? On top of everything else, how do we keep pushing forward. My head hurts, my heart hurts, and I know things can be a lot worse but right here, right now, this is my breaking point.
4:46 p.m. - At Walgreens "Mam, did I hear you right??!! That one months supply of the medicine to help save my sons life is $3000??!!!" SERIOUSLY! My emotions are all over the place and this poor pharmacist is about to feel the blow of my gasket :(

February 25, 2011

7:42 a.m. - Here son, take these 12 pills for breakfast...I mean WITH your breakfast. Oh ya, & make sure to eat all 1000 calories that I have on your plate. A brain injury and CF.... who gets this lucky? Leckieville does! Yes I know there are a million things to be positive for, I know God has a plan BUT that doesn't take the initial hurt away. Put yourself in my shoes for one minute. Thank you friends for the support. I need it!
10:24 a.m - We just took the next 4 pills with our snack. He has already broken down in tears saying he doesn't want to take these for the rest of his life. We are only one day in, not even half way through. My poor baby. The one that always smiles and reminds me how to see the sunshine in the rain is hurting inside. That is the worst feeling. I need to fix this! I'm so sorry for being negative, I really am. I know there are many other people worse off than us but in my world right now, it's nearly too much to grasp.

February 27, 2011

8:00 a.m. -Today, I wake up REFRESHED. Even though I didn't sleep at all, God has poured peace upon my heart and I am ready to fight! Ready to do good things with my gifts! I am so blessed to mean so much to my Lord & Savior that I have been given more opportunities than one deserves to serve Him with my testimonies and experience. Leckieville is here to stay and I am PROUD of it!
 

To catch you up....

In January 2008 my husband and I sat in front of a doctor that gave us news, changing our lives forever. We were told that our son (12 years old at the time) had a brain injury and had regressed to apprx age 6/8.  We were told it was the left side of his brain and that chances were, he was and would stay "stuck in time".  There was no answer as to why or how this happened.  Being that it is 2011 and I am just starting this blog, I won't be giving you all of the details as to what we went through but after the numerous changes since that day; I am choosing now to document our lives.  We call it "Leckieville".

Our hopes are to encourage, inspire, and educate.  Before I get too far ahead of myself, here is a journal entry from November 8th, 2009....
______________________________________
I decided to post an update since so many of you have been such a huge part of helping us get to where we are today. After our recent diagnosis, we spent the summer at Duke University receiving a second opinion.  With our permission our information was shared with Yale University.  One day we got a call that they wanted us to come and visit.  And it went like this....

Channer loved the plane ride up to Hartford, CT. I cannot say the same for the trip back to SC, LOL. Apparently, when your child doesn't like change very much, you better know what you are doing when you introduce something new (like a plane ride!). On our way up, we sat on the right side, next to a window and we could see the wing right from our window. The plane was very nice, it even had headrest tv sets in every seat throughout the plane. On our way home, we sat in the front of the plane on the left side. He couldn't see the wing and the front of the plane is much louder. Plus it got dark by the time we got to our connecting flight. This time, no headrest tv's. Needless to say, Channer didn't understand why things were different and insisted that we change seats. The plane was packed and that wasn't an option. We toughed it out and so did everyone else around us.

The people at Yale were so generous and kind. They treated us like royalty. Basically after hours and hours of testing we were told that several things would happen.

1. Our blood work would be examined and they should be done reviewing it in a couple of months. They will stay in close contact with us.

2. Channer was the first to receive this new type of MRI. They said for us to be patient since they have a team of people that will gather to do the readings. The pictures are to be much more precise than any other MRI before. The machine was delivered a month ago at Yale. They were excited to use it as we were to be in it.

3. Channer will officially be labeled PDD - NOS (not otherwise specified). "The essential features of PDD-NOS are severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills; and stereotyped behaviors, interests, and activities". It is on the spectrum of Austism.

4. Channer still remains with the diagnosis of "Organic Brain Syndrome". This is a general term that means he has some sort of injury to his brain and they don't know how or why. Thiey are closing in on the fact that this injury has affected Channer's memory.

5. We talked about strategies and therapies that we are doing or could be doing. They all agreed that we are on the right track.

Overall, I am very happy about the trip. The evaulation doesn't stop here. They still have lots of studies to do with all of the test they took and will continue to look for others like Channer. Of course, once again.....I heard the words "Wow, we have never seen this before". Yale will be apart of us forever. Channer has been assigned a number for research purposes and we have given permission to keep on looking.

I posted on facebook a comment that said "Having a child with disabilities is like a diet, there is no rule book or special pill that gets you where you want to be. It's a lifestyle change. Then your eyes are open to a whole new world.

For many months, I have been knee deep in "investigating". I needed to go through that to get where I am today. I love Channer so much, I want him to have all of the same opportunities that we all have. Now I know that he will. The sky is the limit for him, no matter what doctors want to call it. No diagnosis, no label, no one person will keep him from reaching the stars.

Now, time to write my book. Seriously.

Signed,
"Only in Leckiville" :)