Coffee

Sometimes there are days when you just don't understand the reasons that things are the way that they are.  Yesterday morning I woke up feeling just that way.  I woke up with a knot in my throat, the feeling like I was about to cry...all day.  I couldn't get it to go away.  It was there all day...lurking around just waiting for the opportune time to peak it's head in and make me bawl like a baby.  

It was raining, my daughters second therapy session was cancelled so she only had her first session which meant I was getting us both around for a 45 minute session to drive in the rain and get out in the rain...which leads on further to my next rant....my cars automatic clicker does not work currently so I am having to unlock my door and walk around to put Katerbug in the car...which today meant getting drenched.  While driving to said therapy session, my windshield wipers in the back decided to not work.  I called my husband and he said that with both of those problems along with our heat in the car working intermittently, we were having electrical problems with the car and we needed to take it in....hmmmmph.

So, a Starbucks run helped a little.  Not completely.  Sad that I admitted that coffee is one of my guilty pleasures.  But it is.  It helps...but I do it low fat, so that does help.  It just seemed that every little thing kept raking on me.  Kate has a neurology appointment today and I knew that...so we had to work getting our car around that and she has therapy on Thursday and Friday and this is our only vehicle with a backseat...and then I got so frazzled about that and her having IS I was crying and had to stop and pray and ask God to calm me down.........

You thought that this was just going to be a ramble about my bad morning, huh?  The point of the entire morning is that I never even thought about God until half way through my day when I had let my day get to the point of me crying over something I have peace about but let other regular day to day things and just a rainy morning take hold of me.  I also didn't start my morning out in scripture spending time with the Lord.  It's amazing to me how quickly that I let coffee try to fix me instead of going to God.  Starbucks is good, but it isn't that good.  

Christmas

Those of you who know me well know that I am most likely the one person in your life who loves Christmas the most.  I am the only one who begins listening to Christmas music at the end of September, the only one who gets giddy when stores put out the Christmas displays and ornaments when others get annoyed that they put it out earlier and earlier every year, I am the only person in your life who puts their tree up the day after Halloween…and I am probably one of the people in your life who hums too much Christmas music. 

I have no excuses, no hidden reasons, no childhood drama that explains away the reasoning.  My mother loves Christmas…she made Christmas magical with her decorating, her baking of cookies, the smell of fudge and homemade goodies.  My dad was always the one selecting the music that we decorated the tree by and I can remember from year to year the exact songs we listened to growing up.  My brother and I would decorate with my mom and dad would only help with the tinsel.  I had the most amazing childhood, the most incredible set of parents and brother you could ask for.  

Christmas has always been made to be about Jesus in my house.  We always read the Christmas story.  I always knew that Christ was to be the center of all the celebrating.  It wasn’t about the gifts…and it still isn’t.  I love the spirit of Christmas.  The music, the lights, the car rides to go look at lights, the Christmas Eve service at our church, snuggling by the fire with my husband and looking at our tree, watching my daughter look at the splendor of Christmas and seeing the magic for herself and experience things for herself.  

Christmas for me is truly magical, it allows me the ability to celebrate the Savior that came to save me on that holy night.  I am so thankful for the season of Christmas…although I carry it with me all year around, I get to celebrate it with all the beautiful things of Christmas.

Half-full or Half-empty

Every once in awhile I will get asked the question, "Are you a glass half-empty or glass half-full kind of person?"  I will sit for a moment, ponder the question and look back at them and say, "glass half-full."  This scenario crossed my mind the other day and I asked myself the question.  The fact is that to say I am half-full is quite sad, wouldn't you say?  I believe that there is so much more to that question than one would think...what the person is really asking you is... "Do you see the world as a negative, God-less and sad place half of the time or do you see the world as a positive, God-breathed and hopeful place half of the time?"

Some of you might think I am reading more into that question than I should, but I just feel like if you have Jesus in your heart you have a full glass.  There is no need to say that you see the world as half-full.  It is a way to share your faith with the world.  A way to shine your light to a dark world.

It doesn't matter what your circumstances are, where you've been, what you've done-He'll meet you where you are.  If it's anger in your heart because of the things that you have faced in your life, He sees it and knows it.  He longs to help you get rid of it and to bring you to a place of renewal.  There is a great deal of pain in this world-pain of loosing those we love, pain of fighting sickness of our own, pain of our children being ill and the anger that we have of not being able to heal them--God knows and He sees it--but what we have to remember is God does not cause these things, but He loves us and wants to comfort us and meet us where we are.

So is your glass half-empty or half-full?  I know that Jesus can make it a full-glass.

Frame of Mind

Can I even begin to put into words my current state of mind?  Can I even begin to tell you where my heart is right now?  Can I even start to explain what I think about all day long?  

I don't think that is something that I am capable of doing.  My current frame of mind is something that changes daily.  Most days you will see me being alive and optimistic and other days I am struggling to make it through...but most people will only see the smile and the "everything is going to be okay" face.  How can I be anything but faithful?  How can I be anything but godly and trustworthy?  How do I praise Him in the storm?  How do I see that even though my child is literally being taken away from me several times a day--God is there?

Friday night my Kate began having a seizure at about 4:45 this seizure kept going and she began having a headache and she began furrowing her eyebrows and crying in pain, so we did the usual routine of tylenol and holding her for comfort. Twenty-five minutes into the seizure she was still restless and upset so we ran a bath and I got in to hold her because this generally calms her down...as Stephen was about to hand her to me she fell backwards, lifeless into his arms and stopped breathing I got out of the tub and ran to her--this happened four times, the fifth and sixth time her face turned blue as it had in the hospital and these times were the longer times where she was non-responsive and completely lifeless.  When she gasped for air the sixth time she came to for a few second and began breathing normally and went into a deep sleep for about 2 hours.  

This scenario is likely to happen again, we have medicines to stop it before it does hopefully.  This is a scary scene and we were overwhelmed-yet calm-because we had witnessed it before...although I do not know that one can ever truly be calm when your child stops breathing in your arms.

I talked to a friend over the weekend and she reminded me to always go back to the truth.  The truth of who God is.  The truth that God is my comfort, He is our Healer, He is our Savior, our Redeemer, our Protector, our All.  Throughout everything that we continue to go through with Kate I don't understand it all, and I look up at heaven sometimes and I say out loud to God, "I do not understand your plan."  I have to trust that He doesn't have a plan of calamity for our child or for us (also His children).  I have to trust that He sees the end at the beginning.  I have to remind myself that "God is God and I am not and I can only see a part of the picture He's painting" (SCC).  It's okay for me to kick and scream and cry and be messy with my emotions...I'm only human.  That is an okay frame of mind to be in once in awhile...as long as at the end of the day I know that Jesus Christ is on His throne and He has it all, because He is our ALL.

IS Website

What a week it has been for us.  Kate just recently had her second round of IVIG and it doesn't seem to be working.  She had seizures Thursday, Friday, Saturday and Sunday....although she hasn't had any in the last 2 days.  Some days it is difficult to tell whether or not she has had one or not because the severity of her seizures has been diminished, thankfully, by the meds and perhaps by the IVIG.  Her neurologist, along with us, is still not content with the way she is doing following the IVIG.  So, we are in the process of getting all of her records together to send to a specialist that has an emphasis in IS at Chicago Children's Memorial.  We are getting her EEG's, her MRI's, all of her bloodwork, urinalysis, therapy reports, genetics reports...every workup that she's had done together to send to him and trying to set up an appointment.  His first available appointment isn't until February of NEXT year.  They are doing everything in their power to try and work her in due to the severe nature of Kate's case.  

This past weekend was the one year anniversary...if you want to use the word anniversary...I always think of that word as celebratory...anyways...the one year marking of Kate being diagnosed with IS.  It was a hard weekend for us.  After Kate having been in remission, and knowing that the Lord had placed her there along with the help of using incredible doctors and medicine, we have just felt overwhelmed by the anguish of this never ending for our daughter.  Then we look at her sweet face and know that it will end and that her sweet life is in bigger and better, more capable hands than ours...His hands.  I pray that we daily remember to remind ourselves that there is no storm too great for Him to calm.  Although, it is difficult to say that on a day to day basis when you have your baby in your arms that is 'not there' because a seizure has pulled her away from you.  When your baby is crying in agony from a headache that a seizure has left her with.  When your baby sleeps half the day away because the seizure has left her lifeless.  When you sit in a hospital and look at other moms whose children are receiving treatments and realize that you are the mom of a child with special needs...and all along you continue to just think that your daughter is special.  When you are struggling to fight with insurance to pay for drugs that your child needs, but they want you to pay for.  When you want so badly to think about the future...but all you can think about is today....that is where faith comes in and you wonder how people in this world that are going through IS or any other disease with their child make it without Jesus?  How do they cope with the fear, the anxiety?  

I will say that I was blessed to come upon a website www.infantilespasms.com and become a member of that site.  It has become such a blessing.  It is nothing but parents of children with IS...dealing with topics from drug therapies, to discussions on surgical procedures, the stresses on your marriage, the daily struggles of having a child with IS....very beneficial.

Much love to you for now...will write again soon.

Happy Birthday Kate

Today is my Kate's 2nd birthday...gulp, make that a double gulp.  I can't believe how quickly these last two years have gone by.  Time goes by so fast...our lives have been filled with joy that is indescribable all because of a little girl that came into our lives at 2 lbs. 13 oz. on July 28, 2007.  

Her life is a miracle story from the very beginning, a story of God's grace and amazing power of placing people where they are supposed to be in order to work out His plan for a child to end up in the family they are supposed to be in.  Kate has captured our hearts and will capture the heart of most anyone she meets.  Her smile and her ability to cut her eyes at you...as comedic as her daddy and learning to be sassy like her momma.

We are so thankful to have been chosen by the Lord to be her parents.  We know that it is a special gift to raise children...for children really aren't ours, are they?  They are His.  He just allows us the privilege of raising them to know Him, to serve Him and love Him...so that hopefully they will grow up to do the same thing.  I long to instill in Kate a passion and love for Jesus above and beyond anything else.  I know that my little girl is going to face many obstacles in her life...learning difficulties, physical disabilities, speech issues, seizures...etc...but God has already taken victory over those things for her and I believe wholeheartedly that Kate will have the ability to see Jesus regardless of her situation.  

I have so many, many wishes for Kate on her birthday...but mostly I long for her to have no more days of seizures.  We'll continue to pray to the one who can make that happen, instead of wishing! :)  Enjoy the tiny baby pictures...can you believe how little she was? 

Kate's IVIG Tomorrow

So tomorrow is our big day...Kate goes in to Vanderbilt to have the IVIG procedure for 3 days.  We are so hopeful that this will work and be successful in causing the seizures to stop...but yet we are so anxious about our daughter being in the hospital and the fears of infection and worries of her body not accepting the treatment...we know that God has her wrapped in a cocoon of protection as we know His love for our daughter far surpasses anything that we could imagine, yet this afternoon my heart is searching for peace.  

As I began to sort through her clothes to pack her a bag, knowing that she'd have to leave one arm out for the IV and I wanted her to be warm in the cold hospital, I lost it.  I dropped to my knees in her room.  I do my very best to keep it together, and stay positive and optimistic and remember that all things work for His glory...because I truly believe that with all of my heart...but today, this is my little girl that is going through this...my little girl that has to endure all of the things I wish I could go through for her, my little miracle...my Kate.  

Thankfully, Kate was with my mom today, and I was able to collect myself privately and not cry in front of her...because she is at an age where she detects emotion and gets upset...I was able to let it out and release it before God.  I know that He loves me more than I can fathom or deserve...so this momma just asked for a peace to know that Kate would handle this procedure and these next three days would go by quickly.  I pray that this procedure works, of course I do, but I pray His ultimate will in her life, first and foremost.

Asking for prayers for my Kate for the next few days...

Kate's Momma