Tucker Tackles PCD

   As I have shared before, December 11, 2011, was a bittersweet day for our family. This is the day that our youngest son, Tucker, was diagnosed with a rare progressive lung disease most often called PCD. (Primary Ciliary Dyskinesia) We say it was bittersweet because for our sweet Tucker it meant no more poking and proding and testing every time he got sick -- which was becoming more and more frequent. At the same time this meant facing a life long progressive lung disease that is rare and has no cure. In fact, not only is there no cure - there is still tons of research being done just to learn about the disease itself and treatments to help avoid infection and to cope when there is infection. PCD is often 'compared' to CF (cystic fibrosis) because of the similar ways that mucus sits in the lungs acting as a harbor for infection.
   It has been on my heart to do all I can to raise awareness about PCD and also to raise money to donate to the PCD foundation for research purposes. I have thought of a few different fundraising ideas - some over the top that would take tons of overhead, money and time to pull of  and some that would probably work, but never went any farther than a thought. As we entered into October, which is PCD awareness month, I told myself that I was going to do it this time. I was going to follow through and not leave it as one of the hundreds of thoughts or ideas that come and go. 
   I love a t-shirt. Love them! Summer, Winter, Fall and Spring - I don't care. So, I thought, how fun would it be to have a t-shirt that honored our sweet boy and also helped to raise awareness for PCD?!?! My wheels went to spinning, I bounced the idea off of Scotty and a few friends for ideas, I came up with ideas and trashed them. Then...all of a sudden...there it was. A friend (thanks, Pam!)  sent me a text with a football idea and I loved it! I ran with it -- football! Most everyone loves football...especially in the fall!!!
   So here we are, t-shirts have been created, the word is being spread and now all I can do is trust that the Lord will provide people to buy! I have prayed over this fundraiser daily. I have prayed for the Lord to soften people's hearts and want to give to this cause. I have prayed that we would come up with just the perfect design and the perfect verse to go with it! It is all falling into place so perfectly that I can't help but see the hands of God placing it together piece by piece just like a jigsaw puzzle!
   It's so true...isn't it? Trust in Him and He will provide!!

Above is a picture of what our final product looks like! We are so excited to be able to wear them and tell people all about PCD! If you would like to help support our cause please visit our online store and place your order!!! We are so thankful for your support!!!

Visit the PCD Foundation to learn more about PCD!

 

 

He gives strength to the weary and increases the power of the weak. - Isaiah 40:29

Who Am I

    A friend posted something on Facebook today that really spoke to me. (click here to see post) Isn't it funny how sometimes things that seem so small mean so much?
Just this short little blog got me thinking. Who am I? I'm a daughter, wife, mother, child of God, granddaughter, friend, sister, aunt and more. I am proud to be all of these things. Recently, I have realized that all of these should be more to me than just things. If I am glorifying God while filling these important roles that He has given me, then calling these roles things is by far an understatement.
Do the people in my life feel like I cherish them and love them? Do they know that I enjoy their company and I enjoy being able to serve them when they are in need? Do I share the love of my God with them in every little opportunity available? Am I making memories with these people that they will enjoy looking back on for years to come?
   I want my children to enjoy looking back on their childhood. I want them to share their childhood with their kids and their kids kids and their kids kids kids! wink! I want to leave a legacy that can last a lifetime. When you truly think about what that means it can be a little overwhelming. I tend to get caught up in petty things. Things like what the kids will wear or how Madi's hair looks. Things like how well Dylan made his bed or if Dustin put the cars back where they belong when he was done with them. I worry about things like little fingerprints on my oh, so cute fall themed hand towels hanging from the stove. Petty. Silly. Pointless. When I look at the bigger picture - when I think of what my children will tell my grandchildren and my greatgrandchildren - those things mean absolutely nothing. Am I clearly living for the Lord if people say things like, "Her kids are always dressed so cute!" or "her house is decorated so nicely for fall!"? (Thanks to my friend, Sarah, I have to say I think my kitchen is decorated pretty cute for fall right now! wink!) The more I have grown in the Word and studied God's word the more I desire for people to know that I am trying in every way to be a woman who fears the Lord and who tries to show love to people the way that Jesus loved people.
    All of this came from me realizing that because I don't love the way I look I don't take opportunities to be in pictures. I have so many pictures of my kids and Scotty enjoying our vacations, special events and even just quality time together. There are very few with me in it. I am not leaving pictures for my kids to look back on and remember me with. Am I ashamed of how I look or who I am? Who am I to be ashamed of what God has made me? Did you read that? GOD MADE ME (and you)! He is perfect - He doesn't make mistakes and I am saying that I am ashamed? Again, who am I?
    It leaves me in awe to think that God made me, every little detail. I don't deserve it - I don't deserve for Him to love me the way He does. Obviously, the Lord has convicted me in this area. I want to love people, serve people and shine for Jesus in everything I do. Starting today I will pray daily that I am shinging for Jesus and leaving a legacy behind that glorifies God in every aspect.

Check out this song - just be careful...there is a good chance you will need a tissue! wink!

For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God— not by works, so that no one can boast. -Ephesians 2:8-9

What Works For Us May Not Work For You....

      You say tomato; I say tomahto. You say potato; I say potahto. What works for one definitely doesn't work for all. I would say that is the case for almost every situation imaginable.  We have four children. That works for us. We often get remarks like "don't you know where kids come from" or "y'all should buy a TV". Sometimes we get even more personal questions like, "Would you really consider having more children even knowing that it could have lung disease like Tucker?" Yea. People really say these things. Some people will ask anything. Some people honestly believe that our life is their business. I say whatever.
     I am a people person. I love to make conversation with the lady behind me in line at Target. I enjoy talking to the little girl picking out a new toy while we are on the toy isle. I love to make small talk. I know going into a conversation with a complete stranger that my feelings could get hurt...but, I also know that this could be a chance for me to share my Jesus...or to just walk away smiling. It's worth it for me. Totally worth it. Except on the days that people you know...people you have come to grow fond of...say things that hurt. Say things that make you angry. I typically have pretty thick skin - most things I can let go. Sometimes, this is easier said than done. Period. Occasionally, I have been known to let other peoples words bother me and even influence how I think about something.

**Rewind 12 Months**

    "I want to try homeschooling the kids", I say to Scotty.
    "No.", He replies. That simple. He didn't even think about it. Just no. Not happening. Not for us. You may have actually fallen all the way off of your rocker this time. That kind of no. I will be the first to admit that maybe I wasn't the perfectly submissive Godly wife that I strive to be. I may have put up a little fight....something that may have sounded a little like this...
    "Please, honey. I think it could work. I mean just think of all of the benefits of bringing our children home for school. They would have more time to get a strong Godly foundation from us. They would have more time to learn life...not just how to read, write, add and subtract", I begged.
    "No." He wouldn't budge. He had good reasoning. Our children were attending a school that a lot of people wait years and years to get in. Our children were working on what seemed to be a slightly higher level than other children we knew that were their same age. There wasn't anything wrong with the school they were in. I just missed them while they were gone. I just longed to see their faces light up when "they got it". I just had to be the submissive wife that my God has called me to be and follow his lead. It wasn't easy, but that's life sometimes. Okay, if we are being honest that's life a lot of times.  I prayed. I prayed a lot. I didn't necessarily pray for the Lord to change his mind about the schooling we chose for our kids. I prayed for the Lord to put us on the same page. In the same sentence. Better yet, on the same word.  I prayed this prayer for over 11 months. Occasionally I would mention how fun it would be to homeschool, but we never brought it up very often. Quite honestly, I figured it was long gone from his brain...never to return.

**Fast forward to April 2012**

    We are riding down the road - I can't remember exactly where we were going...or even if we were coming or going! Wink! All I remember is the radio was turned up and the kids were singing "Glorious Day" at the top of their lungs in the back seat. All of a sudden, Scotty speaks up. I hear him say "something", but I'm positive I didn't hear him correctly. I ask, "I didn't hear you - can you repeat that, please?"
    "Maybe we should homeschool the kids next year", he says again. Now, I'm sure I looked at him like he had some kind of growth coming out of his ears because I was completely taken by surprise. I wasn't sure how to respond. I nearly cried. Not because I got my way. Not because I was beyond excited at the opportunity to be my children's teacher, but because God answered another prayer. He taught me another lesson.  He showed Himself to me again. He will answer when it's time. His timing is perfect. His timing is right. All I had to do is wait.
    So, I am extremely excited to announce that Titus 2 Christian Academy will be opening it's doors on July 16, 2012.  Scotty and I picked the name of our school very carefully. Titus 2 sums up a lot of things for what we desire for our children to get out of schooling from home.
    All of this to say this: Please choose your words and your attitude carefully. You never know how it may truly affect someone. We have had lots of people encourage us and support us through this decision. We have also had people....people that we love....say things that have really hurt. It may turn out that homeschooling isn't the right answer for our family, but we won't know until we try. This isn't a decision that we have taken lightly. This isn't something that we decided on over night. We have prayed about this decision for quite sometime now. We aren't sure if we will homeschool for one year or until graduation. We plan to take it one year at a time...we plan to pray diligently and seek the Lord's will in the decisions that we make for our family. We appreciate support from all of you!





Wait for the Lord; Be strong, and let your heart take courage; Yes, wait for the Lord. - Psalm 27:14

Be Prepared...This One Is Long

   Whoa! 2 months since I've blogged! Yikes! I don't even know what I should blog about! We've had lots going on - there definitely hasn't been a dull moment. 
  Dylan and Madi tracked out of school in mid-March. We had a very busy track out. Daddy had to go to Charlotte for a business meeting so we thought we would join him and surprise the kids with a stay at Great Wolf Lodge! We got to stay for 3 whole days! It was a blast! The kids played in the water park until they could barely walk themselves back to our room! Dylan and Madi loved every slide, pool and spout of water they could find!

I wasn't sure how the little boys would do. Dustin amazed me. He hit the ground running and never stopped! He found two "big boy" slides that he was allowed to go on and I couldn't begin to tell you how many times he went down them. It's definitely safe to say that the number would be well over 100!

It didn't matter how many times he slid down - it never got old!

 

 

 

He had a hard time keeping his trunks up! wink!

   Tucker was very unsure at first. He wanted to be right by my side at all times. Every time I put him down he would reach for me to pick him up and say, "I need you....I need you!" It melted Mama's heart.  He finally started to get used to it and actually want to explore on his own some! His favorite spots were the ones that squirt, spray or shoot water!

Loving the water shooting up out of the ground!

Enjoying squirting water on the jet ski!

Whoa! That one is big!!

 

   It was such a joy to watch the kids enjoy the time that we had there. We decided to "upgrade" and get the room with bunk beds! The kids were beside themselves when we got to our room!

    I got some really fun pictures and we made memories that will last a lifetime! Here are just a few more fun pictures from our trip...

They loved just sitting in the middle of all of the water sprouts!

Dustin and Tucker enjoyed this "water bubble" so much!

Dylan and Madi waiting for the huge bucket of water to dump on them!

An halfway decent shot of all 4 of them!

Sweet Dylan loves, loves, loves to be in water!

Muscle Man!

Lunch time!

sweet face!

After, we got home from GWL we had lots of preparing to do for Daddy's shoulder surgery that coming Friday. The kids stayed with my parent's for the weekend. We had friends from church bring us meals the first week after surgery. That was such a blessing for us! Scotty's surgery went really well and the recovery has been amazing. We were prepared for the worst and got what I like to think is about the best it could have turned out! The power of prayer never fails to amaze me! We aren't used to Daddy just laying around watching TV all of the time so we got lots of extra snuggle time! Score!

Tucker can't snuggle with Daddy unless he can rub on his ear!!!

    The big kids also got a weekend with my mom, grandma and aunt at the beach! Busy, busy, busy!! Now the big kids are back in school and Dustin is out for spring break! We aren't up to a whole lot - just enjoying our last weeks with Daddy home! Dustin and Tucker got new bikes and they are so funny to watch on them! They love them!!! The first day they got them they were on them for over 4 hours! It's amazing to watch a 2 year old on a bike....so cute!

So...

Stinkin'...

Cute!!!

Tucker has had good days and bad days. He got sick when we got back from Great Wolf Lodge and they put him back on a strong antibiotic. It seemed to do the trick - for a while. Five days after he finished his meds he started back with the "crud" again. We went to UNC yesterday and they said that he has bronchitis. They started him on 3 new antibiotics and told me to watch him closely. He will be on this round of meds for 25 days and then if he still can't seem to fight off infection they are going to try something called an IVIG. Not 100% sure of all of the details - we'll cross that bridge when we get there. From what I gather, basically it is where they give him blood through an IV that will have the antibodies in it that he needs to fight off the bacterias he can't seem to shake. He will go once a month for 9-12 months after this procedure for blood work to make sure his body isn't rejecting the new blood or antibodies. Again...we'll cross that bridge when we get there!
  So, that's what we've been up to....


Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. - Phillipians 4:6-7

The Thought That Counts

   Last Tuesday was a typical Tuesday for us. Hectic, but normal. On Tuesdays and Thursdays Tucker and I pick Dustin up from school and take him to speech/occupational therapy, then we head to pick up the big kids from school. Immediately after we get the big kids Dylan has karate. Again, hectic, but our norm. We've all gotten used to it. Believe it or not the most hectic part begins at 4:30 when we get home. We have 3 hours to cram in homework, dinner, baths and "family" time. Daddy had just gotten home from work and we were all excited to see him and oblivious to anything else going on. All of a sudden I look up and there is our sweet Dustin holding this white box. A box I didn't recognize. "Where did that come from?", I ask.
   "The man at the door gave it to me", he says.
   "The man at the door? What man at the door? When was there a man at the door?", I ask a little confused.  In my head I'm thinking...wait, why did you open the door for a man without Mommy knowing? Better yet - how was there a man at the door that you knew about and I didn't? 
    "Who cares about the man at the door...can't we just see what is in the box?", Dylan says.
    "Yes, Mommy will see what is in the box", I say a little hesitant. I begin to cut the box open as all 4 kids are standing around me trying to be the first to get a glimpse at what was in the box. I take a quick peek and actually see what is in the box. I quickly close the box and tell the children that I am very sorry, but you won't be able to see what is inside of this box. It's for Mommy and Daddy! Wink!
    "Awww, no fair", Dylan complains.
    "Can't  you just at least tell us what it is?", Madi asked in a very concerned voice.
    "That makes me angry!", Dustin yelled.
    I smile and say, "Sorry guys. It's not for children." I'm sure you can only imagine all of the whining and grunting, the "no fairs" and complaining that were going on at this point. Finally, after a few minutes of their pouting and me getting to see all of the goodies in the box I say, "Hey, do y'all wanna know what is in this box?!" They all came running!! I wait until they are all gathered around and I open the box just a little bit. I have 8 hands trying to help me pull the box down to their level and rip the top open as fast as they possibly could! When they finally lay their eyes on the goodies inside of the box the whole room just goes silent. For a second. Literally.
    "Wow! Cool! Those are for us?", Madi squeals
     Dylan chimes in with, "Can we have that instead of dinner?"
    So, I bet you are wondering what in the world these delicious treats could be? Let me just tell you about these beyond amazing apples and cookies that we got! We got six apples that were covered in caramel, and chocolate and some type of candied frosting. Oh. My. Word. I can't even tell you how yummy they were.  They were so big that Scotty and I were able to share them! We also got these adorable cookies that were shaped like apples, butterflies and cars! The kids loved them! Thank you so much to Emily and her family for taking the time to bless us with such a special treat. We enjoyed them so much!
      While we enjoyed our treats there was so much more to it than a sweet treat. It was a treat for my heart. It felt so good to know that someone took a few minutes out of their day to send our family a hand written card and a sweet treat. It really made me stop and think. It challenged me. I so enjoyed being blessed by my sweet friend Emily, but I too would love to bless my friends. So, I have challenged myself to send a friend, relative or an acquaintance something each month this year.  It doesn't have to be something big. It doesn't have to be expensive. The saying stands....it truly is "the thought that counts".

Do not repay evil for evil or reviling for reviling, but on the contrary, bless, for to this you were called, that you may obtain a blessing.-1 Peter 3:9
  

How Can You Not Believe?

   Tomorrow is January 11, 2012. Big deal right? Tomorrow is also exactly one month past December 11, 2011. A bittersweet day. The day we finally got a diagnosis.  It's hard to believe it's already been a month.
   Things haven't changed very much for us...except, now we know why. Now we have answers. We have talked with the doctors about where to go from here. We have made all medical personnel involved aware of his diagnosis. We are slowly learning to be much more aware of germs and how to take precautions to hopefully avoid so many illnesses. We've learned how to fit breathing treatments, chest physical therapy and an inhaler into our schedule....twice a day. We are soon to be the proud owner of our very own pulse oximeter. (this is the device that will conveniently be able to tell us his oxygen saturation here at home without us having to go to the doctor so regularly)  We have learned patience. Okay, okay...maybe we haven't mastered that one quite as well, but....we're working on it!
    Above all of these things I think the thing I have learned the most out of this is to seek the Lord in everything we do. Everything. I have had a few surprising remarks from people asking me how I could possibly believe in God? How could I believe in a good God when my baby has a rare lung disease that has no cure. How could I trust that He is going to bring me through this? Why would He ever do this to someone like me anyway? The only response I have is...How could I not believe in God after all of the grace and mercy He has shown us through these past months? There are so many examples I could share, but to keep this post somewhat short I will just choose a couple of examples that stick out in my mind. Back in September Tucker had his first ciliary biopsy done. The nasty one. The one that I promised myself I would never let them repeat. When they called in October to tell us that they didn't get enough cilia and would have to repeat the biopsy I was faced with a decision that I had already made a definite decision on. I asked them if we could sedate him to repeat the biopsy and their response was a firm and definite, "No!" All I knew to do was pray. Pray that the Lord would help Scotty and I make the right decision for Tucker. It wasn't even a month later when Tucker was admitted for several days and had to be put back under for several procedures and to have his PICC line placed - they were then able to not only do the biopsy while he was sedated, but now they could do it from his lungs which is a better sample anyways! An answered prayer. My next prayer to God was to give us an answer before the end of the year. I know it sounds crazy, but I was desperate. I was hurting. I was miserable watching my baby go through test after test and stick after stick every time he got sick because they just didn't know what was wrong. December 11th was the day. Yep, He answered my prayers again...with 20 days to spare!
    It's easy to become very discouraged when I think about what he actually has. It's easy to feel defeated when I think about there being no cure for PCD. It's easy to feel sorry for myself because my baby has lung disease. But, in the midst of everything that we've been through...after seeing all of the prayers that my God has already answered....I still have to ask, "How can you not believe?"

My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken. -Psalm 62:1-2

Tucker: A True Blessing

   I vividly remember June 5, 2009 like it was yesterday. It was the day we were packing up to head to the lake for a whole week of fun, family and sweet summertime. Our perfect, complete family. We had 2 boys and 1 girl and life was great. Dylan was 5, Madi was 3 and Dustin was 7 months.  I had not been feeling great for a few weeks, but never thought much of it. I was so excited to be going on a family vacation together that I was able to overcome the way I felt and I had pretty much packed everything - all we needed was Daddy to be home from work and we were off! I woke up on that Friday morning excited for our trip - just a few last minute things when all of a sudden it hit me. I still don't feel good. I'm tired. I'm nauseous. I'm achy. Oh, no! I'm pregnant! I rush around and load the kids up. We run to the store for the last minute things we need and....a pregnancy test...or 4! wink! I rush back home and immediately take the test. Yes, all 4 of them. I figured the first test was just broken - there was no way I could be pregnant. Our family is complete. However, after test two, three and four I figured it was safe to assume that they weren't all wrong! After the initial shock of baby number 4 being on the way I was so excited. I couldn't wait to meet this new blessing!
   On January 22, 2010 we welcomed 7 pound 12 ounce Tucker Scott Jordan. There is no other feeling in this world than holding your baby for the first time. Holding baby number four for the first time was no less emotional, no less touching and no less exciting than holding baby number one for the first time. There are really no words to explain the love that a mother feels for her child. While emotionally things are no different with a fourth child - man are things different with a fourth child. Never ever would baby number one have left our house without being dressed perfectly. Often days Tucker doesn't make it out of his jammies before noon. Never would my first child have been in a diaper long enough to even come close to "peeing through it".  Never would I have let my first child eat a cheerio off of the floor at a restaurant, sleep in the clothes he wore that day or go two whole days without a bath! Never. Poor fourth baby! wink!
    It is so hard to believe that in just 18 days Tucker is going to be two. It has been a very long two years. It has been two years that seemed so hard and so tough, but that I wouldn't have traded for anything in this world. These two years and our sweet Tucker have taught me so much. Courage, how to trust in the Lord, patience, perseverance, wisdom and love. Odd, but true.
    Tucker is such a fun little guy. He is becoming such a little person. He loves trucks, trains and four wheelers, Braeden Davis, lollipops, making new friends, green beans, biting, kissing to say he is sorry, dancing and singing, splashing in the bath, praying so he can yell Amen at the end, making nurses and doctors smile, cuddling with mommy and most of all he loves his Daddy! 
    It seems a little funny to say, but I admire Tucker. He is so brave. So courageous. He has been through so many tests, procedures, blood draws and more and he faces them. He faces them without batting an eye. He has been through more in the past 23 months than a lot of people go through in a life time. We are so glad to have a diagnosis and to be able to move on. To know where to go from here. We appreciate everyone's prayers, support and kind words. All we can do now is put one foot in front of the other, one day at a time and lean on the Lord like we never have before.
    It amazes me daily that while it was so hard for me to "accept" that we were having a fourth baby in the beginning - now, so much has come out of his birth. Just like every other child, Tucker is such a blessing and I can't wait to see how the Lord uses him for His glory.

Trust in the LORD with all your heart and lean not on your own understanding. -Proverbs 3:5