Thursday, December 15, 2011

Some ugly, but honest thoughts

  Today has been an extremely hard day.  Well maybe the past few days.  Harper Kate has been really struggling with her seizures lately.  They've never been fully under control, but lately it seems like the medicine isn't doing anything.  We've tried increasing the doses, but it's not seeming to make a difference.  Yesterday, I was practicing feeding Harper Kate carrots and she was loving every bite!  All of a sudden, her eyes crossed, she was staring straight ahead and stopped breathing for about a minute.  It was like she was looking right at me, but wasn't there at all.  After trying to call her name and patting her on her back, I called 911.  She came back after about a minute and once the ambulance got here, she was back to breathing normally, but was completely exhausted since it was a new seizure.  We headed up to the Children's Hospital here in Atlanta where all of her doctors are, headed to the ER in the ambulance and saw a doctor there.  After they took some blood, checked her medicine levels and gave her an extra dose of phenobarbitol they sent us home. 
  I figured she would be pretty exhausted today from all the medicine, but unfortunately she continued having her "normal" type of seizures throughout the day.  I then had to give her an adivan tablet which completely knocks her out.  She's been asleep for the past few hours.  The doctor has decided to up her medicine again, so hopefully beginning tomorrow she will begin to get better.
  While she has been asleep, I've felt all kinds of emotions.  I'm angry, bitter, frustrated, annoyed, sad, but more than anything I feel betrayed and alone. I feel like God has completely abandoned me.  I feel like He does not hear my prayers or that He doesn't care to answer them.  I've begged Him to make her seizures stop, I've told Him I can handle a LOT, but the seizures are pushing it over the edge, that I feel like He has left Harper Kate and me in the middle of a desert with no water or anything to survive.  Medicine doesn't help, doctors are confused and left at a loss of what to do, and the God that supposedly is greater and stronger than all of that is doing NOTHING.  I know this is all not true, but these are the thoughts I've had today, hence the title of the blog. I'm sorry to those brave enough to continue on reading this...
  Why would a God that loves me and loves Harper Kate more than I do allow her seizures to continue, allow her brain to "fire" almost non-stop causing my happy, lovable, precious child to be upset, frustrated and in tears all day?  Why would He put her on this earth to be in pain or hurt?  She knows there are things going on that are not right, she knows something is wrong and it isn't getting better and I feel as though she is looking to me, her mom, to fix it and there is NOTHING I can do.  I want to tell her, "I've asked God to fix it, but apparently He doesn't care about you like I do." 
  Honestly, I wish God would make her whole, or allow her seizures to stop and return my precious, happy child or just take her on to heaven where she would be whole and her personality that is so adorable would flourish.  How dark is that some of you might think?  For a mom to wish her child was in heaven instead of on earth....Only a few of you can imagine what it is like to watch your child hurt and be in pain so much that it almost seems BETTER for her to be in heaven with Jesus.  I cannot explain to you that feeling.  I feel AWFUL saying that & I would be devastated if that is actually what His plan is, but the reality of the situation is that I would rather me hurt, than have her upset and hurt.  I would give anything to trade places with Harper Kate, for her to be ok and me to have struggles.  It seems incredibly backwards that God is trying to teach me some sort of "lesson" through this trial using my CHILD! What have I done to deserve that?  Have I really abandoned God that much, or have I sinned so greatly that the consequence of my sin is that my child is not "whole." 
  I KNOW deep down that these thoughts are wrong and that Satan is beating me while I'm down, so that I stay there, in the depths.  As I read through the book of Job this afternoon, tears streaming down my face, gasping for breath as I yelled at God as loud as I could, I took some comfort in the fact that God says "Where were you when I laid the earth's foundation?  Tell me, if you understand.  Who marked off its dimensions?  Surely you know!  Who stretched a measuring line across it?"  Job 38 continues with God reminding Job of how powerful He is and how ultimately in control He is.  In Job 42, Job replies "I know that you can do all things, no plan of yours can be thwarted."  Ultimately, Job realizes as he has cursed God that God is able to do all things and His plan ultimately will occur. 
  I don't LIKE God's plan right now.  I don't UNDERSTAND God's plan right now and I don't AGREE with God's plan right now.  I wish this wasn't his plan, but truth be known, I KNOW He has a plan.  It's hard to come back to that realization and I can't honestly tell you that I am there.  What I do know...I know that God's word is true. I know it is living and powerful.  I know that in the end, all that lasts will be His word and that it is the only thing I can stand on.  The truths below are reminders of His wonderful plan, love and faithfulness to me even when I feel abandoned. 
  God has ALLOWED Harper Kate to be developed as she is and HE ALONE will complete His ultimate plan with her in the end.  As of late this afternoon, I've chosen to take God at his word, because I have NO OTHER OPTION.  I trust that He will heal Harper Kate in the time and way he chooses and I trust that He will hold my hand while we walk through "the valley of the shadow of death." 
  Thank you for allowing me to share my fears and thoughts with you.  I covet your prayers for Harper Kate, Jarod & myself as we walk through this journey God has placed us on. 

Psalm 32:7  "You are my hiding place; you will protect me from trouble and surround me with songs of deliverance."

Psalm 77:14 "You are the God who performs miracles; you display your power among the peoples."

Psalm 91: "He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.  I will say of the Lord, He is my refuge and my fortress, my GOD in whom I TRUST." 

Psalm 91: 9-12 "If you make the Most High your dwelling even the Lord who is my refuge then no harm will befall you, no disaster will come near your tent. For he will command his angels concerning you, to guard you in all your ways.  They will life you up in their hands so that you will not strike your foot against a stone."

Psalm 91:14-16 "Because he loves me, says the Lord, I will rescue him; I will protect him for he acknowledges my name.  He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.  With long life will I satisfy him and show him my salvation."

Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." 

Psalm 139:13-16 "For you created my inmost being, you knit me together in my mother's womb.  I praise you because I am fearfully and wonderfully made.  Your works are wonderful I know that full well.  My frame was not hidden from you when I was made in the secret place.  When I was woven together in the depths of the earth, your eyes saw my unformed body.  All the days ordained for me were written in your book before one of them came to be."

James 1:2 "Consider it pure joy my brothers whenever you face trials of many kinds because you know that the testing of your faith develops perseverance. 

Psalm 139:7-10 "If I go up to the heavens you are there, If I make my bed in the depths you are there.  If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me.  Your right hand will hold me fast."

and finally.....
     Psalm 150:6  "Let everything that has breath praise the Lord."

PS...Please forgive all grammar and spelling mistakes...posting without proofing can be dangerous. :)

Wednesday, December 14, 2011

Month #6

I continue to be amazed at how hard you are working!  Month #6 was especially exciting because we started going to feeding therapy where you would start learning how to eat big girl food.  We started with small tastes of rice cereal.  It certainly isn't your favorite, but I'm so proud of you for trying!  Mrs. Linda is your feeding therapist and she is so sweet and loves you so much.  She is always encouraging to you and is so proud of you for trying small bites!
  You continued to go to therapy and make huge progress.  You still like your hands a lot and are telling mommy and daddy all kinds of things with the inflection you are starting to find in your voice.  The biggest accomplishment at therapy with Mrs. Karen is that you are able to hold your neck up with some chest support for a couple of seconds without it falling forward. 
  You weighed around 13 1/2 pounds.  You are continuing to get longer.  Even though you are 6 months old, you almost need 9 month pajamas with feet because the 6 month ones are too short.  Nana bought you some pajamas without feet that are 6 month pajamas, but they are almost capri length instead of ankle length.  :)  You are getting more hair and we are able to put bows in your hair, but they do fall out pretty frequently.
  Daddy turned 30 this month!  We had a birthday party for Alex, Jason & Daddy at Nana & Poppy's house.  Lots of his friends were able to come, we had a hamburger "slider" bar, chips and snacks.  The boys wanted an Alabama birthday cake, and so they were able to have it!  We had red and white balloons and when they blew the candles out, we sang the fight song instead of Happy Birthday.  Oh goodness, your daddy and his friends are BIG Alabama fans!  Cookie & Doc came to the party too and they kept you inside away from the craziness.  :)  Lots of people wanted to see you and would come inside to see how big you were getting.  Later in the party, Uncle Eric & Aunt Kristen had a big surprise!  They told Nana & Poppy they were going to have a baby too!  You would have a baby cousin.  Everyone was so excited for them and we can't wait to meet the newest addition to the Pardue family!  Of course, we have no pictures because I was so worried about taking care of you and the party, that I forgot to document the party.  Oh well!
  We also took the annual Johnson beach vacation.  Once again you hung out in your tent, were spoiled by everyone and had a blast.  You slept great in your little tent at night and then spent the day on the beach or by the pool.  We did put you in your cousin Whit's float in the pool and you loved it!  Cookie & Doc & Aunt Kitty kept you & Whit one afternoon so Carrie, Nate, Daddy & me could go have a little relaxation time.  It was a lot of fun!  No doubt, you continue to be a beach bum! :)
  Daddy & I love you so very much.  We are so proud to be your parents and each month brings such new & exciting things for you.  There are many people who pray for you daily and it is obvious by the progress that you continue to make.  I look forward to watching you as you grow and seeing God's amazing work in you!

Just hanging out in the pool with Mommy

Thank you Whit for letting us borrow your float!

Whit & Harper Kate in their matching bathing suits

Jarod & Nate at our night out at the Raw Bar

Napping with Poppy before Jarod's birthday party

Happy girl at the beach!

We've learned to suck our fingers

Have to have a bib on before we eat cereal! 

The cutest bunny in the world

loving the beach

Looking at Mommy at the beach

Hanging with dad under Doc's tent

Napping on the beach

Doc & HK got some great quality time under the tent

I love the sand!  If you look closely, you can see the tan line on HK's face

Happy before therapy

Hard at work with Mrs. Amy

Sweet summertime!

Monday, December 12, 2011

Month #5

During this month you got to experience some very exciting things!  You continued to go to therapy and make good progress.  Your eyes started focusing better and instead of looking up at the sky or ceiling constantly, she has started to look down and look around your environment.  Mrs. Karen continued working on your neck strength at therapy and you started to be able to hold your head up for a couple of seconds while having support under your chin.  You also continued to smile A LOT!  It brought such joy to both of our hearts to watch you smile at us.  God had certainly answered a prayer during this month.  Poppy had been praying that you would smile intentionally at Mommy & Daddy.  During this month you did!  You would get a big smile on your face when we would talk to you.  To see interaction that you wanted to have with us made our month for sure!!!
  You also started to discover your hands.  When you were born it was very difficult for you to move your arms and legs because you weren't strong enough.  Mrs. Karen & Mrs. Amy helped you so much get some strength & now you are able to find your hands while you are lying on your side.  It is very exciting!  Mommy & Daddy will place you on your side and you can bring your hands up to your mouth.  You love that!  You have also started to turn your head from side to side when you hear noises.  I love watching you make such progress!
  One of the hard things about this month was that you started spitting up a lot!  You had a hard time keeping medicine down, you had a lot of secretions in your throat that made it hard to swallow, and you had terrible reflux that medicine couldn't help.  We worked hard with Dr. Meyers for a few months to try to help, but it took a little while for us to figure it out.  I'm sorry baby girl!
  The MOST EXCITING part of the month was that you went on your first Pardue family beach trip.  Each summer we go to the beach with each of our families.  Over the July 4th weekend, we went to Gulf Shores with Nana, Poppy, Uncle Brent, Aunt Abby, Cole, Eli & Gage, Uncle Eric & Aunt Kristen and Uncle Jackson.  We rented a condo and all piled in for the fun! :)  Everyone was so sweet to you and took great care of you.  We spent our days on the beach, and you spent your day in your tent or in Nana's, Mommy's or Daddy's arms!  You LOVE the beach!  I think you love the sound of the ocean, the wind and the warmth of the sun on your face.  You spent hours outside under the umbrella in your tent and you STILL got tan!  How on earth did you do that?  Mrs. Amy & Mrs. Karen couldn't believe how tan you were when you came back from therapy.  We went to dinner and took some pictures with your cousins on the beach.  You weren't the happiest girl when you were getting your picture made, but that's ok.  We watched the fireworks the night before we left with Nana, Poppy, Uncle Jackson & Cole.  They really didn't bother you at all and I was so happy.  You are definately a beach baby, just like your mommy. :)
  You continue to be such a gift to us.  I'm so proud of the progress you are making and I can't wait to watch how God develops you.  We love you more than you can imagine.
Could we be any more happy on the way to dinner?

Picture with my precious one!

I love Aunt Kristen in the background! Asleep waiting to get a table!

Family Pic!

Family picture at sunset

My little southern beach baby!

Cousins!  Gage & HK weren't much into the picture taking

cousins toes!

Kisses from Daddy didn't help the fusiness :(

family pic!

Gage & HK loved sharing the tent for naps

Looking up at Nana

HK LOVES Uncle Jack Jack

I love my angel baby!

Kisses from Mommy

Nana is so good about always working on HK's therapy!

I absolutely LOVE this picture.  Real life caught on camera!  Tears, smiles, distractions & a sword fighter!

Aunt Abby painted HK's toes!  Precious.
playing on the beach towel. 

You started having to wear a bib in the car because of your spitting up all over your clothes :(

HK loving life in her tent

I love that smile!

Friday, December 2, 2011

Month #4

  This was such a fun month.  We took our FIRST family vacation to the BEACH!!!  My great aunt & uncle have a timeshare in Sandestin, and since they were not going for the week, they asked us to use it instead.  We loaded up the car and headed to the beach.  Harper Kate absolutely LOVED it.  We bought a small tent for Harper Kate and put it underneath our umbrella on the sand.  We took her pillow, ipod and speakers and she was set up for success!  She was so sweet letting mom and dad read, lay on the beach and relax and even spend a little time in the ocean.  Harper Kate did NOT like the water.  So she stayed under the shade enjoying life.  We were able to eat out dinner at a couple of places, walk around Sandestin, relax at our favorite vacation spot and have a wonderful first family vacation!  Thank you to Aunt Marilyn & Uncle Barry for allowing Harper Kate to have her first beach vacation at the exact condo where I had my first beach vacation. 
  Month #4 also marked Harper Kate's first meeting with her therapists!!!  In early May we met with Karen (our physical therapist) that so generously volunteered to come to our house for the first few meetings.  Karen came to our home and showed me a few exercises and good positions to keep Harper Kate in so that we could encourage play with her hands and feet.  Karen set goals for Harper Kate and we set out meeting with her once a week for an hour.  We also met with Amy (our occupational therapist).  We saw her at Hands on Healing (the therapy clinic).  The first time we went Amy played with Harper Kate to see what kinds of things she was able to do (which at that time wasn't much at all!).  Once again, Amy set goals and found a time to begin seeing her once a week.  I can't express what a god-send Karen and Amy have been.  They have been faithful to work with her every week, encourage me with things I can do at home and because of them (and of course God's blessing on her) Harper Kate has made incredible progress! 
  Harper Kate weighed about 12 1/2 pounds and was about 25 inches long.  She started smiling a lot more and since during this month she hit her first Father's Day, she decided to "coo" and talk to Daddy that day!  There was no better gift he could have received than to hear his baby girl talk to him for practically the first time.  Harper Kate also began bringing her hands to her mouth while playing on her side during this month.  With just a little therapy, it was amazing to see the progress she was already starting to make!  :)
  Here are some pictures to enjoy from month #4.
First beach trip with Daddy!

I love listening to the water in my tent!

Naptime on the beach with Mommy

more time in the tent.

Walking back from breakfast at Another Broken Egg

Mrs. Karen would NOT like this positioning! :) hahaha

Naptime with Daddy after a long day on the beach!

Bathtime at home

Naked Play :)

Is there a cute bunny rabbit on this earth?!?!