Boys and Summer

Wow...these boys are growing up fast. Too fast. It wasn't that long ago Chris and I had NO clue what being a parent meant or what unconditional love meant. We had no idea how hard it would all be. Reward and pride in the same moments as frustration and heartache. We had no clue that loving these little beings with all we had also meant letting them learn to fail all by themselves. We try to protect them but the truth is the older two are beginning to figure out this life is not all roses and balloons all the time. Kinda makes me sad they have to realize that this early in their little lives. 

Tate will be in middle school in the fall. 6th grade.  He has grown up so much this past year. Yes...he IS almost as tall as me. Not quite...but almost! 😉 He's maturing and getting a little braver with his eye rolling abilities. (He's quickly figuring out that's not going to fly around here.) He finished up his school year starring in his 5th grade play. Seriously. I don't mean to brag..(but I will), he was unbelievably AMESOME!!! So proud of this kid and who he is, what he believes and the young man he's becoming. 6th grade, be ready...he's headed your way!

TanMan is finishing up an amazing year of 3rd grade. He has really blossomed this year. His compassion for others is HUGE!  He is always the one to befriend those without many friends and take the lead on making them feel valuable and important. Couldn't ask for anything more. He is an AMAZING big AND little brother! He truly loves with his whole being. His dream? To own a zoo. Yep. This kid loves animals and wants to share them with the world. Loving, caring, always smiling, and makes us laugh constantly. He brightens our world. 💗

TuckTuck ~ our baby. Although he's not much of a baby anymore. This kiddo is hilarious. He seriously is the best of both of us. He, for sure got his Daddy's charm which is either going to get him IN or keep him OUT of trouble in future years. He has officially graduated preschool and will be in Kindergarten at Tanner's school in the fall. To say he is excited is an understatement. To say Mom is excited is a lie. Can't he just stay 5 forever? Please??? Tucker is our "dance-party in the kitchen" leader and the one who will make you smile when you feel like crying.  He's pretty awesome. And being cute doesn't hurt. 

Summer is booked and we are on our way! From the Scottish Highland Games with all the MacNicol's to camping at the lake for a couple of weeks to celebrate my 40th (gasp!) to rafting the Hiawassee as our-end-of-summer tradition, it's sure to be an exciting adventurous summer! Can't wait to make memories that will last a lifetime!

Oh these boys. Can't imagine our lives without them. They keep us running from one thing to the next. They keep us laughing constantly and they keep reminding us how blessed we truly are. Thankful beyond words. 

Hope y'all have an amazing summer full

of sprinklers, Popsicles and loads of fun! ☀️

Soooo, turning 40 might hurt a little....

I was debating on putting this to paper but I think it might help me process this whole surreal unforgettable event. 

My bestie and I planned a trip to celebrate our birthdays. Special birthdays...special friends. You see, our moms were friends when they were pregnant so we had 40 years worth of our friendship to celebrate! We planned our trip...to the beautiful Dominican Republic.  Flight booked, all-inclusive resort. All we needed to do was pack and hop on the plane and that's exactly what we did. ☀️

Beautiful weather at a beautiful resort. We relaxed on the beach, did a little paddle boarding and laughed A LOT. 

The water was amazing. Crystal blue and green and almost completely clear in some spots. 

On Saturday, we were just finishing a dip in the ocean with plans to go hang out at the pool when I stepped down and felt the instant mind-blowing pain. I pulled my foot out of the water and saw lots of blood and a white bony thing sticking out. I instinctively pulled this foreign object out of my foot and screamed in pain. At the time I had no idea, but I had stepped on a stingray and the "bony thing" was a 2 inch poisonous barb that had inserted itself into my foot. Pain like nothing I've ever felt before. Instant. Harsh. I tried to constrain myself but I just couldn't. My bestie, KK, who was only an arm reach away immediately grabbed me and drug me to shore.  Someone had gone to get help and within minutes a lifeguard swooped me up and took me to the pool area. He applied pressure to stop the bleeding but quickly realized this was more than just a cut. He quickly took me to the resort "infirmary" where they assumed I'd been stung by something, bandaged me up and had the lifeguard carry me to our room. There I lay. Writhing in pain. KK went to get ice.  Then she went to get help. This was NOT getting better. My leg was starting to swell and the pain wasn't letting up. Somehow she found a wheelchair and took me back to the infirmary. There, I received IV meds for pain. It didn't help. They quickly gave me another dose. Nothing. My leg was swollen to my knee and it was getting red and hot. I was screaming. Blood-curdling screaming. I couldn't control it. I couldn't stop it. It was ALL I could do. It was time to hit the road. I was loaded into an "ambulance" which resembled a make-shift mini van with the seats pulled out and a gurney tied to the floor. I didn't care. "Get me some help and fast" was all I was thinking. It took about 30 min to get to the hospital in La Romana. I yelled the whole way. 

It was a terribly long ride. One KK and I both thought would never end. Once we arrived, the back hatch to the ambulance was opened by a kid. I don't remember much but I remember that and thinking "Oh my! What am I doing here?!?!" 

Once inside, NO ONE spoke English. No one. They called a Doctora that could communicate somewhat with KK.  They administered 3 doses of morphine and then I heard the words "We are going to need to sedate her."  What?? What are you going to do? At the moment, I didn't care. I just needed some relief. It had been 3 hours since I stepped down on this thing, and I needed something to make the pain stop. As they were putting the oxygen mask on me, I told KK to tell my family that I loved them. I have NEVER been so scared in my life. I wasn't sure if I'd wake up and if I did I wasn't sure I would have all of my limbs intact. I prayed and trusted that God was going to take care of me and take care of KK. That was all I knew to do. 

For 2 hours, KK said I moaned and groaned while under sedatation. They cleaned my puncture wound and inspected the area, then decided I needed to stay the night in ICU. At that point they moved me to a room and locked the door behind me...without KK. She was having NONE of that. She found a nurse who spoke some English and insisted that she be with me in ICU. (Thankfully she is pretty bossy).  Once I woke up they took my swimsuit off and offered me a "shower" which consisted of  a cold bucket of water poured over my head while I stood on a tile. Miserable, still groggy from the meds and a bloody yucky painful foot. I changed into a gown and settled into my bed for the night. KK right next to me, holding my hand the whole time.  

The night was long. There were no alcohol swabs being used when they administered meds into my IV. There were no gloves on the nurses hands. There was a man who had just had brain surgery of some kind in the bed right next to mine -only separated by a curtain. The  toilet in the bathroom inside icu didn't flush so any toilet paper had to be thrown in the trash can next to the small sink. 

This was the view right outside the door of the hospital. It was unlike anything we'd ever experienced before. 

The next morning we were ready to get out of there and get home as fast as we could. Unfortunately that took some time. My foot was wrecked. (Beware the following pictures):

I was drowsy from the drugs and terrified of infection. 

We finally were discharged. We made it back to the resort that afternoon and made it to our flight the following morning. ✈️ 

It was not the relaxing birthday celebration we had dreamed of but I am so thankful for my bestie and all that she endured. I can say she has definately improved her Spanish during the past week! Haha! 

I saw my Internist today. 4 days post injury. He was amazed at my story. I got a tetanus shot, rosefen shot and two oral antibiotics to try to prevent infection and reduce the toxins still in my foot. 

I am on the mend. As bad as it was I am so thankful that things weren't worse. I have never been so happy to be back in the States and home with my family. Much love to my lifelong friend who fought for me and with me through the whole traumatic experience. 

My boys. My heart. ❤️

Being Thankful...all the time

So ...lots of people are putting their daily "thankful's" on FaceBook during the month of November. While I think this is the PERFECT time to do this (I mean, it is Thanksgiving season) I hate the fact that we, as a society, leave it to only one month.  What would happen if we were speaking out our "thankful's" each and every day? 

This year has been a great one for our crew. And maybe that's because we've come out the other side  from all of 2012's struggles and heartaches. We've seen where we've been while navigating this path of our lives, and in that we have learned to appreciate the little things a little bit more.  I'm not saying I don't get down, become selfish, want for more... But in the broad scope of life, we've got things pretty darn good here. 

We've got our health, our loved ones, our friends, our Faith.  

Since last year and all my health issues with lupus, we have been going, going, going. Some people (who mean well) have said "You need to slow down."  "You are doing too much."  And my least favorite: "You are going to make yourself sick...again".  For those who have said it (or maybe even thought it) it's okay. I know you have no idea what it means to have a chronic illness. To be sick at random times, for random lengths of time, with random, alternating, confusing symptoms. There's no way you could possibly understand that after laying in the bed for six straight weeks twice in one year, watching life go on without participating in it; why I would ever think of slowing down, staying still, taking it easy.

 You see, Lupus has taught me a lot about myself. It has taught me a lot about pushing through difficult times. It has taught me a lot about having faith when I have absolutely zero control over my illness. It took me along time to not feel guilty about being sick. I didn't cause lupus. Nothing I'm doing or not doing will cause my illness to flare.  Yes, I can take care of myself, eat right, exercise and be the healthiest I can be on what I can control, but there is so much I can't control about lupus. So in the midst of the struggle, I try to count my blessings. I try to be grateful. Everyday. There's not a day that goes by when I'm not fully aware of this "thorn in my side". I may look healthy, smile through the pain and pretend like my body is not fighting itself, but the truth is...it is. And for that I'm thankful. For everything this disease has taught our family.  For everything I've learned while traveling this road... about myself, my marriage, my children.  

So you may not see my daily thankful posts, but I'm trying to be thankful (even in the hard stuff) everyday. And I challenge you to do the same. Carry your gratefulness not just through November but all the way through 2014. I promise it'll open your eyes to so much more and the big things will turn into the little things. Before you know it, the little things will just disappear. :)

You are chosen.

Okay, let's go ahead and get the white elephant out of the room. Yes...it's been over a year since I posted anything about our little world. Truth is...life's been busy. We've had ups and we've had downs. 

I'll try to do better. Honestly I will. No promises though cause that just adds one more thing to my to-do list. 😁

YOU ARE CHOSEN

So I'm at the ReCreate women's conference last night and Priscilla Shirer is speaking. Talking about how we all are here at this specific time for a specific purpose. That is doesn't have to be that we are a huge speaker or a major worship leader - that we are entrusted by God to empower those in our little circle. To encourage and lift up our husbands, to form and mold the souls of our children. To be examples to our friends and coworkers. She talked about trials and heartache and how at times we may feel "cheated" because our life is not what we imagined.  I thought of my little "neck of the woods" and what all our own family has endured...in terms of sickness, finances, heartaches, disappointments, etc.   I thought of my family and my friends... all who have taken their own journey and paths through life. (I would have to say most of us probably are not where we thought we should be at this age and stage of life.) 

And then she said:

"You were not cheated...

You. Were. CHOSEN"

It hit me like a ton of bricks.  Life sucks. Illness sucks, heartache sucks, trials/suffering ...it all sucks. But we have a purpose and a plan. We can take our situation. Our life. And make it a light for our circle. We can give Him our burdens, our cares and press on to make a difference in someone else's world.  We can look at our current situation and know (trust) that God is positioning us to be here at this very moment while he is preparing us for something greater.

I just know how I've felt with lupus in the past.
I'm not cheated...I'm chosen.

You are not cheated...you are chosen.

To be a daughter, son, sister, brother, mom, dad, aunt, uncle, friend, neighbor, co-worker. 

You.  Are.  Chosen.

Your circle. His plan. This is what He chose you to do. Maybe not forever but for right now and I truly, honestly believe he is positioning us all for something greater.

I felt the nudge to share.  So... I did.
❤️

Where are we?

Here! We are here! :)

Thankfully at this very moment I'm with my little family at the beach, enjoying the salt water, the fresh air and the time that I've been craving with the boys and Chris.  I've felt so isolated these last 6 weeks being sick and in the bed.  I'm excited to say that I am feeling MUCH better!  My energy level is rising every day, I've got almost zero pain and there is HOPE in my heart.  I'm fighting.  I'm going to keep fighting. I'm going to prove Lupus wrong. :)

Tate, Tanner and Tucker enjoying our first day.

I'm still on a ton of meds~ hoping to wean off of them sooner rather than later.  But I've also taken control of some things that I wanted to share.

So I've changed the way I'm eating.  No grains, no sugar, no dairy.  Basically I'm going back to the basics.  Meat, Veggies, Fruit, Nuts and Seeds are what my food consumption consists of.  Let me tell you what a change it has been in just a few days:


As you know, I've had a recent lupus flare that left me spending 6 weeks in the bed while visiting the ER twice and having home-health delivering upwards of 180mg of IV steriods over 3 days.  This time lupus attacked my lungs, lymph nodes and voice box.  It's been painful and debilitating. I'm taking 22 pills a day and have had no voice for weeks.  I'm done waiting on things to get better.  I'm fighting. I decided it might be time to at least look at it- so I ordered the book,(after much encouragement from a good friend) The Primal Blueprint by Mark Sisson.

Last Friday (5/25/2012) I made the change.  Mind you I was in the bed for 2 days before (plenty of time to read).  After 1 days of eating "primally", I was up and out of the bed with a little bit energy and almost no pain (and on my way for to a beach trip that I wasn't sure I was going to be able to make).  Today it's Wednesday- Day 6 of "primal living"- My voice is completely back - no hoarseness at all.  I feel "almost normal" which is a HUGE difference from this time last week when the most I moved was from the bed to the bathroom to the couch.  I'm convinced that my life is about to change in a dramatic way.

My hubby, Chris (who is fit and energetic) is completely on board and my boys are about to get a big awakening from the pop-tarts/cereal breakfast. :)

This is just the beginning of my success story (seeing as it's not even been a week yet) but I am convinced in the method and I'm walking proof that what we eat can change everything within our being.  

I know that I don't have total control of this disease and what happens in the future.  Thankfully God is WAY more qualified than I am in handling my life :) - He's proven himself over and over again.  However, it does feel good to know that now I'm eating what He's providing.  His hand is on everything - not the hands processing and adding things to our foods.  It's not hype. Just the truth. I challenge you to check it out.  See what you think and make your own decisions.  Give it 21 days.  Heck give it a week!
The more I learn the more it makes sense to me and I bet it will to you too.

Just wanted to share what I'm learning through this trial:

1.  God is ALWAYS in control and He NEVER leaves us.  In fact, when things get hard, He's the one that     carries us through. He's the one that's strong when we are weak.

2.  My friends are some of the BEST people I could ever imagine knowing.  We have been completely overwhelmed by your love, support and acts of kindness during these past 2 months. From carpools, playdates, cards, food and most of all , your prayers.  Thank you from the bottom of our hearts.

3. My family is unbelievable.  Simply unbelievable.  I can't imagine what it must be like for them to watch and not be able to "fix" the problem.  Thank you for keeping me encouraged, for letting me cry and for just holding my hand.  And thank you for celebrating the little steps forward with me because as much as the news was bad...I couldn't wait to share the small victories with you! :)

4.  My boys.  All 4 of them (including Chris).  :)  I'm so excited to be able to play with them again.  To watch them enjoying life. To be able to participate and not just sit on the sidelines of life is an amazing feeling.  So thankful for each of them and the special love they give to me.  So proud to be a Mommy and Wife.

So that's it.  The update.  I told you I would write again when I was feeling better and enjoying summer and that is TODAY.

See ya soon!
t

Seeing the Light at the End of the Tunnel ~

Wow...it's been a few months since I posted.  Time flies when things are crazy! ha!  I promise I'm going to try to be better at this ~ had every intention of posting at least once a month!  Good intentions....

So life's been a little "on-hold" lately.  Lupus has reared its ugly head and decided to take its place in my lungs (Lupus Pleuritis)  Needless to say - not a fun experience.  I've been in the bed for 4 weeks now...showing some improvement lately.  Baby steps, but improvement none the less.  Not to bore you with the ins-and-outs of this disease but if you don't know a lot about it - its something to behold.  It's known as "the most misunderstood disease" because it mimics so many other diseases.  It can take years to diagnose and no two lupus patients present the same way.  It can attack ANY part of your body (lungs, heart, skin, kidneys, etc)  It's basically an attack of your immune system on all your healthy cells, which causes inflammation, scarring and hosts of other issues.  It comes and goes in a series of relapses and  remissions so lots of people "look great" and are still very sick.  As of today,  I'm on 22 pills just to keep things at bay and most of the meds are toxic in their own right - causing a load of nasty side effects and putting me at risk for other diseases.   

May is actually Lupus Awareness Month. www.lupus.org   Some might say perfect timing for people to see how yucky lupus can really make a person feel.  I know lots of you have been praying for me as I've been keeping things updated on Facebook.  You have no idea how much it means to read your encouraging words and know that you are in my corner and are understanding of this disease as best you can.  Amazing friends and family I have. :)

And with saying that- let me brag (just a bit) on my wonderful hubby, Chris.  I love that man.  He is my ROCK.  He has been with me every single step of the way and loved me through it all.  He knows just what I need when I need it ~ whether its something to eat/drink, hold my hand, give me a hug or to just sit with me and let me cry.   Sometimes he's bossy and makes me sit down and quit talking but I know he's right.  (Just don't tell him!) ha!  In the midst of the past month, he has taken over and taken care of everything.  The kids, the house, his job...all while not complaining, watching me suffer and knowing there is nothing he can do to "fix this".  Hard for a loved one, I know.  He's a very special Husband and Daddy and I am so thankful for him.  We celebrated 14 years of marriage on May 9th and I honestly can say that I love him more today than I did on our wedding day!  Thank you Chris for all your love and support.

Also want to say how thankful I am for Mom, Dad and Mandy along with all my wonderfully giving friends  and family who have stepped up for car-pooling, dinners, breakfasts, phone calls, emails, love and prayers.  The MacNicol House could not be functioning without every single one of you and your thoughtfulness. Always asking "What can I do for you?"  We are overwhelmed by all the love.

Our boys ~  oh my they are growing up so fast!  Just finished baseball season and unfortunately I wasn't able to attend the last few weeks of games, which I hated.  But they are such troopers! Tucker wakes up every morning, runs to our room and says "Good morning Mommy!  Are you feeling better today?"  So very precious.  They are my SMILES.  Tate and Tanner have been so helpful - they even dusted and vacuumed the house for me this week!   :)  They have been handling this all remarkably well.  Had a few worries and concerns (of course) but we are being honest with them and answering all the questions they have.  This is the Mom they know, and I struggle with that, but I also know that God has a bigger plan and he is preparing them for their own lives one day. We are trusting the He will use these times to make them better Husbands and Daddy's in the future. :)

One more note and then I'm done.  (I know this is a long one....)

On  June 9th we are taking a stand against Lupus while participating in the Lupus Walk here in Birmingham.  We would LOVE for you to join us!  Even if you can't be present you can still help by making a small donation to help us raise awareness and to find a CURE!  

For more info:  LUPUS WALK FOR NOW BIRMINGHAM

Next time I post- hoping it'll be to tell you how great my health is doing and how we are enjoying the first of SUMMER!! 

t

What I've learned from Lupus

There are a few things having a chronic disease will teach you.  I thought I'd share them.  They are not in any specific order.

1.  You will learn how to "fake it" better than most.   There are only a select few that see you at your worst.  The rest see you struggling...with a smile.

2.  You will count your blessings...sometimes by the minute.

3.  You will see God's promises and TRUST them.  Sometimes through the pain, that's all you've got.

4.  You will feel helpless for not being able to do the things you once did.

5.  You will be frustrated that those close to you can't understand  AND be grateful at the same time.

6.  You will feel guilty as your children play outside and you lie in the bed.

7.  You  will hate texting your friends to tell them that you can't make it for lunch because you need to go back to bed.

8.  One day you will feel like you can take on the world...the next day like you could sink to the bottom of it.

9.  You will find out that those who love you...really love you.

10.  You will finally understand what it means to depend on others even when you don't normally like to ask for help.

11.  You will be humbled and amazed at what you can go through and come out stronger on the other side.

12.  Once you allow other's to help, you'll be amazed at how wonderful it makes them feel.

13.  When the simple things exhaust you, you'll come to appreciate the larger tasks.

14.  You become an excellent planner...as every day has to have a balance.

15.  You appreciate your family and friends more than they will ever know.

Walk for Lupus Now
2011

16.  You will look healthy, so most people will not have a clue that you are sick.

17.  Even though other's may not know, you NEVER forget you have this disease.  It's with you wherever you go.

18.  Your "good" days will never be the same.

19.  Your life has to change.  Period.  It's up to you how to keep living it.

20.  Even through Lupus or another chronic illness, you have to remember that God works all things to the good.  Always.

I've recently had the revelation that:

Because of Lupus, I am a stay-at-home mom which was always my dream.  

Because of Lupus, I have made some amazing friends that I might not have otherwise met.  

Because of Lupus, I am part of a support group that can help encourage others that are struggling with this disease.  

Because of Lupus, I know how strong I really am.  

Because of Lupus, my Faith is stronger that it has ever been and my relationship with God is like its never been.  

Because of Lupus, I am okay with just being me.

The "Walk for Lupus Now" in Birmingham is June 9th.  

If you would like to join my team and walk with us or make a donation; you can sign up here: http://walkforlupusnowbirmingham.kintera.org/faf/donorReg/donorPledge.asp?ievent=1012285&lis=1&kntae1012285=02DABCF8B92D433088AEC9CDD524A498&supId=265750248    

As always, thanks so much for your love and support.

Refreshed.

Wow.  What a feeling!  I just got back from a girls weekend with a few of my aunts and cousins and it was EXACTLY what I needed.

A refreshment of sorts.
A get-away.
A chance to regroup, relax and refocus.

I haven't laughed that hard in months!  Just thinking about laughing so much is making me laugh now! ha!

It's really important to "get-away" sometimes.  To take a step back from our bubble and to see the world for what it is.  A temporary place.  A place to enjoy the moments -not to rush through them.  It was really just a great weekend.  And you know what?  I really missed my little family.  I couldn't wait to walk through the doors and have them tackle me on the stairs.  It was great!  The get-away and the coming home. It was all just so great.  :)

The past few months have been so loooonnnngggg.  A fear-filled nightmare where every morning seemed to have something new.  I am thankful and ecstatic to say that that nightmare seems to be over.  Tucker has been symptom free since the beginning of January.  No joint pain.  No stiffness.  God is good.  Always.

We have a follow up with the cardiologist in February but are expecting nothing but good news.  The rheumatologist follow up will be in 6 more months but he is hopeful that the joint issues are behind us.  Wow.  What a difference a month makes right?

We celebrated two birthdays in the past month ~  Tate turned 9 on Dec 31 and Tanner turned 7 on Jan 11.  Busy times at this house.  We had an adventure at the Tennessee Aquarium to celebrate.  It was fun fun fun!

Basketball season is in full swing.  This is Tate's first year to play and he is loving it.  He's getting better at each practice and game.  We are enjoying it too!  I had no idea how much I would like watching basketball (it's never been the sport of choice)  But when your kid is out there - its a different ballgame.  REBOUND!!!

Tanner got a visit from the tooth fairy in January.  He's only lost two teeth so far and this one was hanging on for dear life!  I, for one, was thankful when it decided to take a leave of absence.

Tucker is now wearing big-boy undies!  Yipppeee!  I am officially done with diapers.  Whew ~ What a feeling!

It's really cool looking back at this blog that I started just a few short months ago.  How quickly life changes.  The highs and the lows.  It's definitely been  healing for me to be able to type it all out.  To vent at times.  To express how I have felt (even the ugly parts) and to see where I am today.

Life will always throw us the lemons, right?
We've just got to figure out how much sugar to add to make it into a REFRESHment.

Stuck

That's how I feel right now.  Stuck.  Not moving forward...not going back.  I'm in the present (which is where we all should be) but I'm so lost in it I'm not sure which way is up.

The past two months?  A complete whirlwind.   An emotional roller coaster.  Can I please get off?  I'm tired of riding.

To update those of you who are new:  Go read the last post and then come back.

For those of you who are up to date:  When I wrote the last post we were on our way up.  On our way off the roller coaster.  Tucker was feeling better and better each day.  We were seeing real improvement... then BAM!

On Dec 3, 2011, Tucker wakes up and can't stand.  He's crying in pain.  His hips, knees and neck.  It all hurts.  He doesn't want us changing his diaper because to lift him hurts.  I sit him on the couch and go get the phone in the other room and he falls off the couch because he can't move.

SCARY.

AGAIN.

After talking with my pediatrician (which is the BEST in the world!), we head to Children's ER where we talk with a Pediatric Rheumatologist.  Is this still Kawasaki Disease or is it something more?  No one knows.  There are no answers.  We start Steriods and we wait.  The Doctor calls us on Monday.  Tucker is no better so we start Naproxen.  Again we wait.  I've been "waiting" so much lately I ought to be on a ride in DisneyWorld by now!

Jump to today:
Tucker's middle finger on his right hand is bent most of the time.  Strange.  One finger. One hand.  His left hand will periodically ball into a fist.  No rhyme.  No reason.  He just can't move them or straighten them.  His hands hurt.  Occasionally, he limps.  He doesn't complain...but his gait is definitely not normal.  Please can somebody PLEASE help my baby boy?

So at this moment we are in the process of scheduling an MRI of his hand. We wait.  Some more. We ought to be really good at this by now.  I mean, I was diagnosed with Lupus 5 years ago.  It took a very long time to figure things out. I know what to expect in this process of waiting but this is my son we are talking about!  I can hurt and cry and be exhausted but not him.  He's two.  He's not supposed to know what it feels like to be in chronic pain.  He's not supposed to wonder how he's going to wake up and what his day will be like.  I know he's not thinking of that right now, but if this doesn't go away...he will one day. :(   and that breaks my heart.  That is not what I want for him.

But as I type, I'm reminded.  It's not about what YOU want for him.  It's about what I want for him.


Okay, Okay.  I'm listening...and I'm thinking of Mary.  How she must have hurt for her baby boy!  Tears.  True tears from deep within.  Painful tears for the fear of your baby going through something so horrible that you have no control over.  And that's the bottom line, I guess.  I don't have any control.  God allows us things that He knows we can handle.  Things that allow His Glory to shine.  I'm not seeing it yet.  Just being honest.  I'm in the middle of it and I'm just not seeing it.  But I'm going to trust.  Yes...even in the middle of it.  I'm going to trust Him.

Please continue to pray for Tucker's healing; for his comfort and his peace.  Please pray for Chris and I - that we will be patient in waiting.  That we will keep the faith so that others may somehow be blessed by what we are going through.

I'll keep you posted.  Probably when we are done "waiting".

Tucker - Kawasaki Disease

If someone told me on the day that my sister had her first child that I would be scared of losing my smallest munchkin by the end of the week - There is NO WAY I would have believed them.

But that is exactly what happened.

The story for those of you who want to know:

THE BEGINNING:
Tucker ran a low grade fever most of the weekend.  Nothing over 100 degrees and he was playing and acting completely normal.  Chris had been traveling for the past couple of weeks so his Dad was in town to enable me to be with Mandy on Monday morning when we were expecting Baby Mac's arrival. :)  I asked Bruce to keep a watch on Tucker just to make sure his temp didn't escalate - of course Monday afternnoon it did.  On my way home from holding my new little nephew I went ahead and made a pediatrician appointment for Tuesday afternoon.  I figured he had a "fever virus" (whatever that really is) or possibly an ear infection (it's just that time of the year).

At dinner Monday night Tucker told me "I gots ta bump on my neck".  I felt it - an enlarged node.  Nothing big...no worries... just figured it was an infection.  A quick fix.  Skip to the middle of the night; the "bump" was huge.  Tucker's neck was so painful...he just whimpered in his sleep.  Fever got up to 103 so first thing that morning I called the pediatrician and they got us in.  Diagnosis:  Double Ear Infections and a Lymph Node Infection.  Prescription for Augmentin and things to watch for "just in case" he got worse.  We went home.  He slept much of the day.  He mostly just wanted to be held.  I was alternating Tylenol and Motrin but we couldn't get his fever under 101.

Tucker slept with me Tuesday night.  His fever spiked at 104.6 at 4am.  I called the After-Hours line and talked with a nurse.  Since he already had taken 2 doses of the antibiotic she suggested that I call my pediatrician back at 8am.  4 hours??  Seriously??  He was miserable.  We were both crying.  I felt helpless...and scared.

WEDNESDAY:
At 8am, I called and they told us to come in.  They drew some blood and sent us to the Children's Hospital ER for a CT Scan.  They were looking to see if the lymph node had an abscess.  At this time I had no idea that if they did find an abscess that we would be heading into surgery.  I called Chris and told him to be on standby. (He was 4 hours away and feeling more helpless than me) :(  The ER took us straight back.  They started him on an IV of fluids and Clindamycin.  We had a CT of his neck - Praise the Lord it was all clear!  Tucker's temp had dropped.  They diagnosed us with an infection and sent us home with a script of Clindmycin.  Skip to home.  I dropped Tucker with Bruce (Chris's dad)  so that I could get the prescription filled.  By the time I got back home, Tuckers fever had spiked again to 103.8 and he was vomiting.  I called the pediatrician.  She called Children's Hospital.  And we are on the road again.  This time with an overnight bag.

We arrive at Children's and get admitted.  The nurses are GREAT!  The doctors are GREAT!  But no one has a CLUE as to what is going on with my little man.  We stay the night - they trace the outline of his lymph node to measure the size and they diagnose him with "Lymphadenopathy".  An infection of the lymph node.  We start yet another IV in his little pudgy hand and we wait for the medicine to kick in.  It was a long night.  His fever refused to go under 101...most the time it hovered around 103.

THURSDAY - Fever Day 4:
Morning came; along with the attending Physician and about 6-7 Residents ready to check out his poor little swollen neck.  They look.  They touch - he is super sensitive.  He is in a lot of pain.  The Tylenol/Motrin is just not helping at this point.  His tongue has developed a thrush-like whiteness on it.  They decide to keep us another night for observation.  I go to my smart phone (Thank the Lord for technology!) and start my own research.  My "mom intuition" has kicked into full force and I am on a hunt to figure this thing out.  Chris arrives around lunch - I am so thankful to see him.  I'm exhausted, emotional and completely scared.  I am so thankful that I don't have to do this alone.  Tucker tries to manage a smile for Daddy but he is just too pooped and feels so terribly bad.  Chris went home to be with the big boys Thursday night to make sure they were doing okay.  So thankful for his Dad who took care of everything with the big kids.  He even went on a field trip to the zoo with Tanner! :)  I needed Thursday night alone.  I needed to cry - to completely let go.  I had no idea what was around the corner.

FRIDAY- Fever Day 5:
Morning comes early.  Tucker is not any better.  Fever is still 103.  He's beginning to get this weird rash all over his body.  It comes and goes with his fever.  We are told his tonsils are the size of ping pong balls.  No wonder he is gagging and vomiting when we try to put 2-3 drops of tylenol into his mouth.  He is beginning to swell.  They drop his IV fluids back to see if that will help.  It doesn't.  The swelling only gets worse.  He is really lethargic.  We had a few visitors but he didn't know they were there at all.  Through his IV he is now getting: fluids, clindamycin, benadryl and prenisone.  Orally he is taking Tylenol, Motrin and Nystatin.   He is just so very sick.  It breaks out hearts.  We are helpless, unknowing and everything is out of our control.  The doctors still think it is a virus.  The lymph node is looking better but he's got all these other new symptoms and they can't control his fever.  We are told to plan on staying through the weekend.


SATURDAY:
It's been 6 days of fever.
We've spent 4 days in the hospital.
We now have a diagnosis:  Kawasaki Disease


WHAT???  What is that?  Who gets it?  What causes it?  What does that mean for my little angel who's so terribly sick?  What is the outcome?  What's the prognosis?  Those were questions that we were trying to get answered.  Unfortunately not a lot got answered.  We did learn that Kawasaki Disease is a rare childhood illness that affects mostly children under the age of 5 and mostly boys.  No one knows if it comes from a virus or an autoimmune disorder (Hello?? alarms were going off since I have Lupus). Kawasaki Disease affects the mucus membranes, lymph nodes, walls of the blood vessels, and the heart.  Tucker's tongue has turned into a "strawberry tongue"; its bright red, beefy with lots of little bumps.  The whites of his eyes are now just red - the vessels are all so swollen.  


Bottom line:  SCARY.

Treatment calls for IVIG therapy which is a 12 hour infusion through an IV.  Since Tucker has not ingested anything since Monday we can't stop his IV fluid so they have to place another IV into his foot.  This little baby is so tough.  He has endured more pain and agony than I wanted him to endure in a lifetime.  At this point, I'm numb.  I'm on the verge of a meltdown but have to keep it together for him.  Chris is my rock.  He keeps reassuring me that everything is going to be okay but I'm not so sure he believes it himself.


We start the IVIG Therapy treatment.  And we wait.  We are told that he should be a different little boy in the morning.  Our prayers are just that.  


SUNDAY:

We wake.  Tucker seems a little better.  Not that miraculous change I was hoping for but better.  We were able to give him a sponge bath and he actually asked for something to eat.  Those were the first words that he had spoken since Wednesday.  He wanted one of my Grandmother's pecan tassies.  Now if you've never had a pecan tassie, you might not understand...but Tucker does.  He ate two!!  We have an echocardiogram done to check for damage of the blood vessels in Tucker's heart.  All looks great! Temp stays down most of the day so we are hopeful.  We have to be 36 hours fever free to be in the clear.  Unfortunately, it doesn't stay down long. :(  By 9pm it's spiked to 101.5.  The IVIG therapy failed.  On to plan B.


MONDAY - Fever Day 8:

Monday morning comes with a new attending physician: an immunologist. He confirms that the IVIG treatment failed.  Protocol states that if the first IVIG fails, you should do a second treatment.  Our physician says if he didn't respond to the first one..its likely he won't respond to the second one so why put him through it?  We are really liking this guy!  Instead, he wants to move to the third treatment: an infusion of Remicade and Aspirin therapy.  Along with the treatment comes new risks but also hopefully healing for our little dude. We are prayerful.  We are feeling God's peace.  We are waiting for results.  But seriously!  This just plain ol' sucks.
The infusion takes 4 hours.  He has to take an adult aspirin every 6 hours.  I don't know if you've ever tried to crush an adult aspirin and feed it through a syringe to a 2 year old...but let me tell ya "It ain't easy!"  The nurses tried everything from apple juice, strawberry milk and ice cream.  It was a battle each and every time. We got it in and most the time it stayed in but there was not a single thing fun about it. 
  
I have no idea what would  happen if this treatment did not of work.  I don't even want to think about it.  It's bad enough that it's been 8 days of fever.  Everything I've read says the risk of coronary problems gets worse after day 10.  In my mind - we've got 48 hours.


We had a visit from 2 Pediatric Rheumatologists Sunday night.  They were hopeful that the Remicade would work "if this was Kawasaki Disease".  What did they just say?  They think this could be something ELSE?? Really???  That's when Macrophage Activation Syndrome was mentioned.  I immediately looked it up "a severe, potentially life-threatening, complication"  That was it...  I couldn't take anymore.  I was officially terrified.


Monday night was spent in a lot of prayer and a lot of worry.  I know those two things shouldn't go together -but if I want to be completely honest (and I'm really trying).  That is EXACTLY how that night was spent.


TUESDAY:
I've got my Tucker back!!  Thank you Jesus!  He is up and talking and eating and laughing!  Truly a miracle that we all  just witnessed.  The nurses are ecstatic!  The doctors are thrilled!  All Tucker wants to do is take a wagon ride to see all the Christmas Decorations that are in the lobby and to check out the clowns.  But first...we have to do some more tests.  We have an ultrasound of his liver and gallbladder and he has a ton of blood drawn.  So we wait.  We wait on another possible diagnosis.  And we pray.

Tuesday was a scary day but a great one.  We found out that he did show some small signs of Macrophage Activation Syndrome early on but that he was all clear now.  Everything checked out.  We also learned that the he was responding well to the Remicade treatment and that his fever should be gone completely.   At 4pm we were told we could either stay one more night or we could go on home.  Guess which one we picked? :)


THE LATEST:  
It's been 2 weeks since we were discharged from the hospital.  Tucker continues to improve each and every day.  He takes a baby aspirin daily in case of any coronary problems.  We've seen our pediatrician twice and checked his labs.  Some things like liver enzymes and platelet counts are still high but we are hopeful that they will improve with time.  We have to revisit the cardiologist on Dec 13th to repeat the Echocardiogram.  I think once we hear that it is clear we will be able to breathe a little easier.


We are so thankful to our family who stepped up and took care of the rest of our lives so that we could concentrate on Tucker during this time.  I truly don't know what I would've done without their presence; along with all the love and support.  Our friends are simply amazing.  They called, visited, brought dinner and loved us through it all.  


But mostly what got us through the toughest of times were all the prayers. I've heard from so many people about people from all over the world praying for our little Tucker.  From New York to Brazil I could truly feel those prayers.


Chris and I stand firm in our Faith. We have no doubt there is a God who loves us and wants the very best for us.  In times like these, its sometimes hard to wonder why this would happen.  Why would this precious little child have to go through so much pain?  Why would God's followers have to bear such a burden?  I don't know that answer. All I do know and all I can trust is that He has a plan for our lives.  For my life..for Tuckers life.  That's what faith is...thats what faith looks like; when everything is knocking you down...you have no control..and everything is unknown...where do you turn?  Who do you trust?  We are choosing to trust in the one true God who saves.  We are turning to Him.  
And you know what?  He hasn't let us down yet. :0)

Overwhelmed.

Do you ever feel that way?  Completely overwhelmed?

You know the feeling, right?
Out of control.
"Stuff" surrounding you.
 The never ending to-do list swirling in your head.

Well, I do.  It seems to be my daily life.  I swear I JUST cleaned my house on Friday and today it looks as if three tornadoes have been through it.  The tornadoes even have names! (Want to guess?)

It seems crazy to even think I have the time or energy to clean my house.  I mean, we are SO BUSY these days.  I sometimes wonder what life would be like to move to a different place (by the beach) ...mingle in with the town folk and live a much simpler style of life.  Sounds great, right?  But then I wonder...would I really like a simpler life?  Don't I thrive on the chaos, even just a little bit?  Would I grow bored?  Would my kids grow bored?  Don't get me wrong...I love the sense of community, the sports, the school activities, the to-do lists...but I have to think  "Does any of this even matter?"

In the grand scheme of "LIFE" - does it matter if Tanner plays baseball or if Tate makes an "A"?  Does it matter that Tucker doesn't want to go to the "big boy potty"?  So what if he's happy in a diaper?  Isn't there more things to life than us as parents teaching our children to be "busy"?

Turns out there is.  We've got a purpose.  I know...you've heard that before, but when is the last time you thought about YOUR  purpose?  When is the last time you pondered what your "special task" is?

Well, I've finally figured out mine.  You ready for this?   It's the gifts that were given to me in the form of sons.  Tate, Tanner and Tucker are my reasons for being here.
At this time.
In this moment.
To teach them about life, about love and to help them discover what their purpose is.  Some days are crazy busy, some days are not.  What I've learned most of all through this thing called "life" is that the miracle of children, the innocence of their view on our world; being "busy" just doesn't matter.  What does matter is LOVE.  Love for God, love for others and loving themselves.  That's what MY purpose is in life ~ to teach my boys how to love and how to be loved.

Oh great!  NOW I'm really feeling overwhelmed!    :0)

Here we are...

Well, here we are....I'm jumping on the the wagon and am going to do something that I've always wanted to do -  I'm going to WRITE!  Not that I expect anyone to READ what I'm writing but hey ~  crazier things have happened, right? 


Our little family seems to be going 90 miles a minute on most days and I thought this might be the best way to capture (and share) what's going on in a family with 3 active boys (that are running in 3 different directions), a hubby who travels and new puppy who is chewing on my shoe in the current moment.  


My job?  To somehow keep the SANITY, the SCHEDULE and the LAUNDRY done in this wonderful place we call "HOME".  


Honestly, there is no place I'd rather be. :0)


So welcome... to the Wacky Wonderful Home of the MacNicol Clan.  I hope you come back and visit very soon.