Extending Help and Grace

I might not find favor with many people after writing this blog post, but it hit me this weekend that as a society, we don’t offer help and grace to others.  I am going to narrow it down even more….there are a lot of “Christians” that don’t offer grace.  Let me tell you a story:

I was walking this weekend out in public (I will blog later about my weekend), while I was walking I tripped and almost fell down.  A hand grabbed mine, that of a stranger and when I looked over I was face to face with a young man (probably in his 20’s) and his “partner.”  The young man who grabbed my hand was black and his partner was white….if you haven’t guessed they were gay.  When I looked into this young man’s eyes though, I could tell he didn’t see a middle-aged heterosexual white woman.  He saw a human being.  He saw someone in need and the color of my skin, my sexual orientation, my religious preference or my political affiliation didn’t matter to him.  ALL he saw was a lady that almost fell down and he didn’t want me to get hurt.  I wish I could repeat word for word what he said but it was something like “oh sweetie, I wasn’t going to let you fall….I had you.  You weren’t going to get hurt on my watch.  I would kick him (talking about his male partner) to the curb to catch you.”  I then thanked him profusely (a little embarrassed, but grateful) and walked away.  Last night as I was trying to go to sleep both of their faces kept flashing through my mind and I thought…..how many times in the past have I judged someone based on the color of their skin, sexual orientation, religious or even political preferences?  Would I have reached out to help someone….would I have extended grace?  Would I have let my judgements get in the way of being that person that could help someone out?

I think so many times we judge people based on their appearance and we don’t take time to see they are the same as us.  Some of the sweetest, kindest most giving people I know are covered in tattoos.  They shouldn’t be treated differently because they have tattoos.  Judgements shouldn’t be made about them because of the art on their body.  I am a staunch conservative and I have made no qualms about that…..but because of that I don’t “hate” all liberals.  In fact, I hope and pray that I would be just as sweet, kind and compassionate to a liberal as I would be to another conservative.  Do I have the right to turn my back on others in need because they are an atheist?  No!  In fact, in my opinion those are the people we should love the most…..we might be the only Jesus they might ever see.

As a Christian, I should hold myself accountable to do my very best to see others as Christ does.  I can guarantee that when the Lord looks at the world of people HE created He doesn’t see anything but people.  He doesn’t pick and choose who He loves.  The Bible says in John 3:16, For God so loved THE WORLD that He gave His only begotten son that WHOSOEVER believes in Him, should not perish but have eternal life.  I am a firm believer that He loves us all; but hates our sin.  Let’s face it, we all sin but that is where God’s grace covers us.  Shouldn’t we extend help and grace to others?  Granted, we would never be able to extend the kind of grace that God does, but we should try.

It just really hit me this weekend when that young man “caught me” from falling.  He wanted to help me.  There was nothing for him to gain by helping me; but he did it anyway.  He didn’t let this world and opinions of this world get in the way of him doing the right thing.  He could have kept walking and no one would have blamed him, but he didn’t.  He stopped, helped and extended grace to me…..a complete stranger who probably at one time or another had judged someone just like him.  Shame on me!  Very thankful for the people God puts in our path to remind us that we are ALL His children and no matter what our differences, we should always try to extend help and grace to those in need.

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Until next time……

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It’s Just Not Fair

It’s one of those days…..one of those it’s just not fair days!  Hannah woke up sick.  Last night before she went to bed she was gagging/choking a lot.  The fear went through me that she was catching something and 9 times out of 10 when I get that “fear,” unfortunately, I am usually right!  Call it mama’s instinct, but I usually know!  In fact, I couldn’t sleep last night just waiting for her to get up and she did….at 1:30, 2:45, 3:30, 4:45 and 5:30.  Then at 8:30 I heard the cough and drainage more than last night.  Hannah always runs a low-grade fever and has for the past 18 months, so unless it spikes I can’t judge anything by that.  As of now, it is just low-grade though.  Hannah normally comes and crawls in bed with me when she wakes up, but this morning she didn’t.  I just heard her in her room saying, “mama call Dr. Kim, Hannah sick.”  She repeated that over and over.  Breaks my heart.

We know Hannah has a very weakened immune system, plus the steroids suppress the already weakened immune system and IVIG will suppress it before building it up SO….this should be no surprise, but it still sucks!

Today, is a pity-party day I suppose.  I know how I feel so I can ONLY IMAGINE how my sweet little girl feels.  I just hate that she has to suffer.  I hate that all she knows is being sick and feeling lousy.  I hate that she is a prisoner in her own home with no friends, no fun, no excitement and of course cognitively not understanding any of this.  I have screamed, cried, cussed and prayed…..somehow that seems like an oxymoron (the cussing and praying parts), but I am human and honest and that is what I have done.  I haven’t cussed at God yet though, so I think it’s all good!  HA!  Gotta laugh about something!

So, excuse me today as I have my “it’s not fair day” and excuse my pity party and lack of motivation to do anything.  If you think about it, would you pray for us?  I could use a few extra prayers today and in all honesty, I don’t have the words right this very minute to do it myself.

Now I am off to snuggle my baby….that is, if she will let me!

Making fun of myself today!

Making fun of myself today!

Until next time……..

Treatment Plan, Fraud and Privacy

Where to begin……we are HOME, that is a good start!

Hannah did amazingly well for her first HD IVIG infusion.  We are so thankful for answered prayer!  God indeed heard each and every prayer and plea on Hannah’s behalf and He answered in ways that even exceeded my expectations!  My sweet little girl didn’t even utter a whimper as they put in the IV.  She was such a “brave dragon” like Stuffy on Doc McStuffins!  Hannah was ooey-gooey sweet and loving to every doctor, nurse, janitor, kitchen helper and staff member at the hospital that she came in contact with.  So proud of my sweet girl.

We had our follow-up with the PANDAS Specialist yesterday and of course Dr. Winesett, our Neurologist gave us our treatment plan for the days, weeks, months and possibly years ahead.  In a nutshell, we will be traveling to St. Pete monthly….as much as this chic hates traveling and living out of a suitcase (I truly do), I will do it for however long it is needed to get my little girl well.  We did find out yesterday that due to Hannah’s low immune system and some of her childhood vaccines not taking (we cannot and will not re-vaccinate her due to PANDAS), she might need IVIG for her lifetime.  That was not what we wanted to hear, but again…..we will do whatever it takes to get her well and keep her that way.  At this time we don’t know how long she will need High-dose IVIG but from now until further notice she will be receiving infusions monthly in St. Pete at All Children’s Hospital.

Now onto something I don’t want to do but feel as if I have to.  While we were away, I was the victim of fraud and it is our belief that it might be someone that we know or who reads my blog or Facebook.  So, I have come to the conclusion that it is in Hannah’s best interest and ours to keep things more private.  I will not be posting dates that we will be away, where we will be or unfortunately pictures on the blog or Facebook until after the fact, if then.  This world of technology is wonderful in so many aspects but also can be detrimental if you say too much.  It is one thing to victimize me, I am a big girl and can handle it; but I WILL NOT ALLOW Hannah to be victimized in any shape or form.  This time, it was me and I handled it….there will not be a next time……

I think it is sad that the world is the way it is…..you aren’t safe…..your home, bank account….nothing is safe.  But, to me, the really sad part is our children aren’t safe.  It is my #1 responsibility to keep Hannah safe and I will do that even if the time comes to one day stop blogging and closing down my Facebook page.  NOTHING is worth being victimized!

So, I resort to some privacy for our little girl and for Dennis and me.  I hate to do it because I know so many people like to pray specifically and “during” all that is happening but I am doing what I have to do.  It is for the best, as there will be times Dennis will stay home and Hannah and I will be going alone and I don’t need to let people know that.  So, unfortunately no more dates, places, times or pictures while it is happening.  This was truly a wake-up call for me.

All I can ask is that you continue to pray for us and remember us as we travel this new road of what we are hoping and praying is a healing journey for Hannah.  I will still be blogging, just will be more vague and not as open.  Don’t worry though…..I will still be “real” and “transparent.”  Nothing and no one can stop that!

Thank you all for your continued thoughts, prayers and love.  If by some chance the person that committed the fraud on me happens to read this blog……God will getcha so you better watch out!

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Until next time……..

Sorry For The Delay

It has been a crazy whirlwind since we left to come to St. Pete on Tuesday and other than this iPad I am typing on I have had no other way of updating the blog.  So, this might be a short post since it is a pain to type on this thing.

Infusion has begun!

Infusion has begun!

Hannah had her HD IVIG infusions Wednesday and Thursday and she did wonderfully (Praise the Lord)!  Friday morning she did begin with a bad headache and nausea but after a good high dose of steroids those symptoms subsided, again Praise the Lord!  We were discharged from the hospital on Friday morning and have been at the hotel ever since.

I have to take a minute and praise the staff, doctors, nurses, admitting team, janitors, kitchen staff….everyone at All Children’s Hospital!  They have been fabulous!  Dennis and I both were shocked at the efficiency, quality of care and way All Children’s is run.  Absolutely top-notch!  We knew Hannah was in the best possible hands!

Our hotel, the Staybridge Suites is a new hotel and they have been awesome as well.  Free shuttle service to and from the hospital, meals (3 nights of dinner and breakfast every morning).  They knew why we were here and never failed to ask how Hannah was doing.  It has been an extremely good experience!  This will be where we stay each time unless we can find an apartment, which I am going to check in to.  It would really be nice to have a place to call ours so not having to pack (load and unload) each time.  We also would like to have the choice of staying longer if for some reason we need to.  So, if I can find an apartment close by the hospital for the same amount we will be spending at the hotel, we will try to do that.

At this time, we will be traveling down here every 4 weeks for infusions.  The infusions will still be over 2 days (8 hours each day), but hopefully done as outpatient, if she doesn’t have adverse reactions.  If she does, they will admit her.  So, things are still on for being down here each month for about 4-6 days each time depending on follow-up appointments afterwards.

we are so thankful for all the prayers, support, love and encouragement.  This journey is far from over and we continue to cover your prayers for safety, grace, strength and healing!  Dr. Winesett warned us that we are “wandering in the dark.”  We don’t know how many treatments Hannah will need or if they are going to work but he is optimistic and so we will do what he thinks is best and follow the protocol he has give us.

Hannah’s immune system is not good though and these infusions will weaken it before helping it so for the next 3-6 months we will be isolating Hannah like we have been prior to treatment.  It is the utmost importance that we keep Hannah well while she goes through these treatments so it can treat the inflammation on her brain and then treat her immune system.  Please understand that.  We know we have people who want to see her but until we are given clearance from our doctor, we are going to do everything in our power to keep her safe and well.

Thank you all again for your prayers, support and love.  We have no words to express our gratitude and appreciation.  God is hearing, He is answering and I truly believe He is healing Hannah!

Back at the hotel and ready for bed.... Happy girl with Lulu the monkey!

Back at the hotel and ready for bed…. Happy girl with Lulu the monkey!

Until next time…….

 

 

 

 

Ready Or Not

I have used this picture before but the sign behind Hannah's head seems very appropriate today!

I have used this picture before but the sign behind Hannah’s head seems very appropriate today!

The house is clean.  The bags are packed.  The car is almost loaded.  Ready or not, we are heading to what I pray is the beginning of a healing journey for Hannah.

I would be lying if I said that I wasn’t nervous, anxious or scared.  The truth is, I am petrified!  Our Neurologist’s exact words were “this will be a walk in the dark.”  We don’t know how Hannah’s little body will respond to this treatment.  We don’t know how many treatments she will need.  We don’t know how often she will need them.  We are taking a walk down what might be a very long and difficult road.  A road that I know in my heart we have to travel but the unknown is very scary.  Hannah could go through this with no side effects (which is my prayer).  She could have the “typical” side effects or more severe side effects.  I am listing them here from the website for those who are wondering.  Please pray that this is easy for Hannah and that none of these take place; especially the more severe ones:

IVIG Side Effects
Some common side effects are:

  • Headache
  • Chills/Shaking chills
  • Migraine
  • Dizziness
  • Fever
  • Nausea/Vomiting
  • Fatigue
  • Faster Heart Rate
  • Itching
  • Upper Abdominal Pain
  • Rash/Hives
  • Increased Blood Pressure
  • Cough

Serious adverse events have been reported to occur in association with IVIG such as:

  • Hives, swelling in the mouth or throat, itching, trouble breathing, wheezing, fainting or dizziness. These could be signs of a serious allergic reaction.
  • Bad headache with nausea, vomiting, stiff neck, fever, and sensitivity to light. These could be signs of irritation of the lining around your brain.
  • Reduced urination, sudden weight gain, or swelling in your legs. These could be signs of a kidney problem.
  • Pain, swelling, warmth, redness, or a lump in your legs or arms. These could be signs of a blood clot.
  • Brown or red urine, fast heart rate, yellow skin or eyes. These could be signs of a liver problem or a blood problem.
  • Chest pain or trouble breathing, blue lips or extremities. These could be signs of a serious heart or lung problem.
  • Fever over 100 degrees.  This could be the sign of infection.

I know the Lord has gone before us in this.  I know He isn’t taking “a walk in the dark,” and that brings me much comfort.  I know He will be holding us and right there with us through this; just like He has been the moment Hannah was born, (actually way before that).  But, I am human and my fears are real.  I don’t want Hannah to suffer anymore than she already has.  I don’t want her to feel pain.  I don’t want her to hurt, be confused or be any more frustrated than she already is.  This is hard.  It is difficult to have a 9-year-old little girl who cognitively cannot understand why she has gone through all she has and now why she has to go through this treatment with no guarantee that it will even work.  There is no explaining this to Hannah.  All she understands is that to be able to go back to school and church she has to get much better.  She knows she is going to a hospital in St. Pete and she knows she has to have an IV; but that is all she comprehends.  I think that she thinks once she gets this IV next week she will be good to go, feeling all better and will be able to immediately resume the life she once had.  I know that isn’t happening.  I know that unless God performs a miracle (which I believe He can do), but unless He does, this will be a very long journey with many treatments and a long time until Hannah can resume any kind of normal life or activity.  I know all of this and I have accepted that this isn’t going to be over next week but in Hannah’s little mind, I pray that she too will be able to accept this life for however long it takes until God heals her completely.

So, ready or not we begin.  Ready or not our long walk in the dark is here.  The one thing I know, at least we aren’t alone.  God is in this….we feel Him….we know He is in control and that no matter what He has a plan.  A big, beautiful plan that only He sees right now.  So we trust…..we move forward and we embrace this journey.  I am thankful for friends and family that are willing to walk with us; supporting us, praying for us and loving us no matter how difficult this road is……we aren’t alone!

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Until next time………..

 

Seizures and Continued Blessings

What a title, huh?  Trust me…seizures are NOT the continued blessings….

This morning was bad…..I knew Hannah was acting strange; but wasn’t sure what was wrong.  She just wanted to sit on the sofa in the den.  Didn’t want to watch TV or anything (which is very unusual).  Normally watching TV is her favorite thing to do in the mornings.  I happened to be in my bathroom putting on some makeup and something just said “go check on Hannah.”  I walked in the den and she looked really pale.  I asked her if she was okay but before she had the chance to respond….it happened….a seizure; one of the really bad ones.  The kind where she went rigid, eyes rolled behind her head, started convulsing and then completely limp and barely breathing.  Then all of a sudden, after about 30 seconds she came to with the most frightened look on her face and started crying.  Then….head down on the sofa completely lethargic followed by sleepiness…..horrific to watch, can’t imagine how it must feel to actually endure it.

As a mom, it scares you, even though I knew what I was seeing because it isn’t our first rodeo with seizures but no matter how many she has had, they still scare me.  My thought is always…..”what if she doesn’t come out of this one?”  Then, you panic….internally….your heart starts racing, your adrenaline kicks in and you have a million thoughts that run through your head.  Then, when it is over, you cry; at least I do.  I think it is more of a “relief” cry because it is over and you pray that you won’t see another one ever again!

I immediately called our PRECIOUS, God-sent Pediatrician.  She is not only Hannah’s doctor but my trusted friend.  Fortunately she is always there for me, no matter all she has been through this past year in her own life personally; she always is there.  We discussed the seizure and she had several thoughts, the main one being we have got to get IVIG!  So, at this time IVIG is still a go for next week in St. Pete.  I was glad to hear that.  Hannah is already on seizure medication so we aren’t sure if perhaps this was a “breakthrough seizure” or what.  There are just no answers as to why.  We just need to treat that inflammation on her brain and hopefully and prayerfully that is what IVIG will do and do it successfully.  Needless to say, I am stressed out.  I have so much to do and I cannot take my eyes off of Hannah, not even for a second.  Weary, drained, tired…..exhausted mentally, physically and emotionally; but so ready for next week to get here!

We continue to be blessed though.  People are praying, people are giving, people are blessing us in ways far beyond our comprehension.  We are overwhelmed by others generosity, their kindness and their friendship.

This morning, good friends of ours dropped off 2 huge snack bags for our trip.  These bags included ALL of our favorite things; food and drinks!  It was such a blessing for us and so very thoughtful.  This past year has made us feel so lost in so many ways; but friends and family have stepped up to help us not feel so alone.  Dennis’ co-workers have been INCREDIBLE; offering to cover his night-shift for him, donating money, offering their support and prayers.  Our church, family and friends have been the hands and feet of Jesus in so many ways and so many of our friends that have walked our whole journey with us continue to do just that.  So thankful for all of those that have walked beside us; praying for us and loving us.  Also thankful for all of those who we have never met that have and continue to pray.  Isn’t it amazing how prayer gives you the chance to touch someone’s life you don’t even know?  So very thankful for those willing to stand in the gap for us!

So, even despite a very rough morning; God sent some angels our way in the form of Hannah’s Pediatrician and the Delaney’s….who He used today to minister to us on just the day we needed it.  God is ALWAYS on time.

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Until next time…….

Nerves and Driving Dennis CRAZY

Nervous, excited, anxious, worried, anticipating, scared….all words to describe how I am feeling at this very moment.  I am in the process of getting organized….okay, I am already organized but I am making lists.  Okay, I am making lists of lists of lists.  Okay, I have already made the lists and more lists and now I am checking things off said lists.  I exhaust myself and I guarantee you I am driving my husband batty….”honey, will you get the suitcases out of the attic?”  “Baby, I think we should take the car.”  Then yesterday…”no, I think we should take the truck, what do you think?  Do you have a preference?  Do you care?”  “Sweetheart, I need to go to Publix…..I need to refill all of Hannah’s prescriptions early…..I need to get snacks to take.  What kind of snacks do you want?  Do you want snacks?  Will you go to Publix for me?  No, never mind, I need to go.  Tonight when you put Hannah to bed, I will go….is that okay with you?”  “I have really got to get packing.  What is the weather going to be like? Tell me your schedule again prior to us leaving.”  “Should we get the car and truck to the shop first for service before we leave?  Which one are we taking?  I need to go vote early….where do I go and when do I go?  I can’t take Hannah with me.”  “Sweetie, I really need to get to Sam’s before we go.  Is that okay with you?  What do you think?  Do you need anything from there?  When can I go?”  Do you get the picture?  I am a non-stop, nagging, talking, question-asking, pain in the you-know-what right now.  It is a miracle he hasn’t looked at me and said….”Tamara, SHUT-UP.”  HA!  Yes, he is too  nice to say that to my face but I am sure he is thinking it!  Either that or he is wishing I would take a Valium, or two.

I am that type A personality.  I plan everything and it all has to be organized weeks in advance.  Problem is I don’t have weeks to plan.  I wish I was that fly-by-my-seat kinda person.  I wish I didn’t have to analyze everything, think of all the pros, cons and what-ifs.  Geez, life would be so much easier without lists of lists of lists.  Seriously, no lie here….I have 12 pieces of paper lying around the house in different spots that say the same exact thing on them…..what to pack, errands to run, things to buy, things to do, phone calls to make…..I am driving myself insane!  Yet, here I sit typing a blog post….guess I need to add “get to a therapist” on that list!

On top of all of this on Tuesday we had to have a new water pump put in  (the joy of having well water) and Dennis has spent the last 3 nights digging a ditch from the pump/well to the garage so our electrician can come out and replace the temporary electrical wire with a permanent one and place it underground.  So, Dennis has had his hands full every afternoon and has me nagging him unmercifully at the same time.  I am not winning any good wife points right now.  Just to brag on my husband for a minute….there is nothing the man can’t do!  He can do just about anything and will before he pays someone!  HA!  He called our electrician and to save money said he would dig the trench….let me tell you that was HARD work especially having to work around the tree roots!  I told him last night that when he retires he could dig ditches for a living…..he didn’t find that amusing!  But, in all seriousness, I am thankful for the hard worker he is.  He has a tremendous work ethic and I have his parents to thank for that!

Well, this blog post is all over the place, sorry!  It shows you where my brain is right now…..all over the place!  I do have a lot to get done before Tuesday but I also need to just breathe and let go of the non-important things.  Not easy for this control-freak!

Happy Thursday….hope you are enjoying  your day and not having to listen to someone nag at you!  Pray for my husband please!  HA!

Until next time…….