Just One Hug

Oh how my heart hurts.  Hannah has been “flaring” for almost 3 weeks now.  This is a really bad flare; which has caused horrific aggression and rage.  I won’t go into any more detail than that, but suffice it to say it is destroying me emotionally.  When Hannah flares, I am her target.  I guess that is good because at least I know she won’t do these things to other people but I will admit, a mother’s heart can only take so much.  I am jealous…..jealous of Dennis and all the other people (teacher, babysitters, therapists, doctors, nurses) that come in contact with her and the hugs that they receive and yet…..none for me.  I just want one hug.  I just want her to wrap her arms around my neck without pulling my hair, scratching or hitting me.  I just want one hug.

I can’t sit here and expect anyone to understand, unless you have been in a similar situation but it is devastating.  This child whom I carried for 9 months, who I left a good job to stay home with, who I have rarely been away from for 11-1/2 years…..this child I am scared of.  I mean, what mom says that?  I am scared of her.  She is strong and when she gets angry it is all I can do to keep her from hurting herself or me.  In that anger and rage if she isn’t attacking herself or me she is finding something to throw or destroy.  It is heart wrenching and has brought me many times to my knees sobbing.

I don’t understand……am I not praying right?  Is my heart not pure?  What am I doing wrong?  I pray daily for peace in my home.  I pray daily for healing.  I pray daily for good health.  I pray scripture.  I beg.  I pray with Thanksgiving.  I have prayed every possible way I know to and yet…..things are as bad now as when this hell began in March 2014.

The loneliness and heartache I feel is so hard to even put into words.  This absolute helplessness is the worst feeling as I watch her struggle daily.  I am at a loss, I would give my life if it would take this from her.  I feel as if she blames me for some reason.  I mean, I am mommy…..mommy should be able to fix this all and make the pain go away and I can’t.  The looks she gives me with her eyes and the anger they reveal, but only towards me…….no one else and again, for that I am thankful, but completely heartbroken about, at the same time.

I know this flare will pass at some point and I will be able to get those hugs and kisses until the next flare comes around.  Unfortunately though, with each flare my heart shatters just a little bit more.  Funny thing is, I am not a touchy-feely affectionate type of person.  I don’t need hugs; in fact very rarely will I initiate a hug with people.  I don’t turn them down, but I don’t have to have them…..except from Hannah.  I would hug her and hold on so tight forever if she would let me; but she won’t.  My heart is shattered and I just want this flare to be over.  I want the doctors to figure out a way to help her.  I want this dreadful disease to be in our past.  I want peace in my home.  I want us to live again.  I want the “old” Hannah back.  I want joy in our home and life.  But, for right now I would settle for just one hug.

Until next time……..

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Until I Take My Last Breath

Today has been hard……yesterday was hard…..the day before that was hard.  Each day lately I have found myself barely keeping my head above water.  Just trying to breathe and take one second at a time.  Last night, if you lived in my neighborhood you would have seen a crazy lady walking down the street after dark in her pajama’s with a glass of wine crying her eyes out……yep, I did that!  I did find some solace in a few of my neighbors willing to listen to my sad story of how hard life has been lately.  I am blessed to have such great neighbors and indeed thankful.  We left a neighborhood with wonderful friends and neighbors and entered another one with the same and for that I am truly grateful.  I digress…….

Tonight was literally the night from hell here in our home……it ended with a raging child and 2 exhausted (mentally, emotionally, physically and spiritually) parents.  In fact, as soon as Hannah got to sleep, Dennis went to bed; leaving me up with my thoughts, feelings and yes…..tears (lots of them).  As I sat in front of the TV trying to watch it, my mind was flooded with memories…..good ones, sweet ones….those prior to PANDAS and then the thought of “how did we get here?”  How did we go from life with a child with Down Syndrome to THIS?  Life with a child we are watching suffer horrifically before our very eyes.  Life with a child who cannot control her emotions.  Life with a child who is on so many medications that the side effects are actually worse than what it is supposed to be treating?  How did we go from a child who was happy, joyful and loving all the time to one who cries for hours each day, attacks herself (and me) and is in pain and agony all day long?  How and why are the questions that flood my mind every.single.day.

As I sat here tonight and was flooded with the memories of the good times and how much I miss them and THAT little girl I questioned my ability to press on; regardless of how long it may be.  Can I do this for another day much less a week, a month, a year, 10 years from now?  Keeping it real here people……the thought of THIS life continuing on and possibly getting worse (as we have been warned it might) scares the living you-know-what out of me but this I promise:

Until I take my last breath I will always do what is in Hannah’s best interest.

Until I take my last breath I will fight for her.

Until I take my last breath no matter how she reacts to me I will love and protect her.

Until I take my last breath I will make sure that she has all she needs in this life; whether that be medications, food, clothing and a roof over her head.

Until I take my last breath I will pray that God gives her a complete and perfect healing.

Until I take my last breath I will BELIEVE WITH ALL I HAVE THAT HE WILL one day give her that complete and perfect healing!

Until I take my last breath I will praise Him in the storm, no matter how much it rages against me.

Until I take my last breath I will thank Him for each day I have with her.

Until I take my last breath and He calls me home I will always be her mom and I will be grateful for that fact.  I will never regret any of this time God has given me…..the good, the bad, the ugly (and let me tell you we are in the ugly part right now).  I will have no regrets.  I will love her, protect her and do everything in my power to make her life a good one.

Until I take my last breath……..I promise no matter how bad it gets, I will be right here loving her with all I have and if God would let me, I would change places with her or give my last breath for her……..

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Until next time……….

 

 

Despair and Joy Is Coming

Let me first take a minute to be honest….completely and authentically real and honest…..I have never in my life felt despair like I do right now.  I have been through a lot of ups and downs in my life and I pray even though I didn’t always handle those challenges properly that I still came out of each one wiser and better.  But, none of my other challenges in life have even come close in comparison to what Dennis and I are going through right now.  We did not get the help, news or treatment options we wanted at the Neurologist on Thursday.  In fact, our Neurologist, although a very smart and kind man is very perplexed about Hannah’s case.  He really had nothing more to offer us than more medication to hopefully get her seizures under control.  A medication with side effects that scare the heck out of me.  But, we have started it.  He is leaving us on the one seizure medication and adding this one.  The number one goal at this time is to keep the seizures from happening.  If this drug doesn’t work in 2 months then he will do an MRI to see what is going on.  But, IVIG and Plasmapheresis are out.  It didn’t shock me, I just prayed he would see the need for the IVIG or Plasmapheresis but he said the “risks outweigh the benefits.”  Again, I wasn’t shocked but it was discouraging when I know so many other parents whose kids have been brought back because of those 2 things.

So, this despair is a feeling of complete and utter helplessness.  I can’t help my little girl live and thrive.  I can’t take her pain away.  Yesterday she cried for nearly 2 solid hours.  My heart just broke…….I cannot even begin to explain the discouragement and despair that Dennis and I both feel.

Last night, around 6:30, I finally made it out of the house to run a few errands that I needed to run and frankly I just needed to get out of the house.  I crave my alone time and normally I don’t even listen to the radio when I am in the truck.  I just like the peace and quiet.  But, last night I turned on K-love, thinking some encouragement from Christian radio might help.  The DJ’s talk too much and I was fixing to turn it off when a lady called in talking about a song that got her through the worst time in her life.  They didn’t play the song but they said it was a song by Josh Wilson.  So, I googled it and oh my…..the words…..those words hit me in my heart.  Here they are:

Before the Morning
Josh Wilson

Do you wonder why you have to feel the things that hurt you
If there’s a God who loves you, where is He now
Maybe there are things you can’t see
And all those things are happening to bring a better ending
Someday somehow you’ll see, you’ll see

Would you dare, would you dare to believe
That you still have a reason to sing
Cause the pain that you’ve been feeling
It can’t compare to the joy that’s coming
So hold on you gotta wait for the light
Press on and just fight the good fight
Cause the pain that you’ve been feeling
It’s just the dark before the morning

My friend, you know how this all ends, you know where you’re going
You just don’t know how you’ll get there, so say a prayer
And hold on cause there’s good for those who love God
But life is not a snapshot, it might take a little time
But you’ll see the bigger picture

Once you feel the weight of glory
All your pain will fade to memory
Once you feel the weight of glory
All your pain will fade to memory

Would you dare, would you dare to believe
That you still got a reason to sing
Cause the pain that you’ve been feeling
It can’t compare to the joy that’s coming
Come on you gotta wait for the light
Press on and just fight the good fight
Cause the pain that you’ve been feeling
It’s just the hurt before the healing
Oh the pain that you’ve been feeling
It’s just the dark before the morning

Songwriters: Josh Wilson / Ben Glover
Before the Morning lyrics © Capitol Christian Music Group

Me paraphrasing what hit me in my heart:  Would you dare to believe, that you still have a reason to sing, cause the pain that you’ve been feeling, can’t compare to the joy that’s coming.  Hold on, you got to wait for the light, press on and fight because its just the dark before the morning……IT CAN’T COMPARE TO THE JOY THAT’S COMING!!!

Talk about exactly what I needed to hear!  God’s impeccable timing.  If I knew how to link a video on here, I would, but go to YouTube and type in Josh Wilson, Before the Morning or go to my Facebook page and watch it there.  If you are feeling lost, alone and in despair hold on….press on…..fight…..no matter what we go through on this earth joy will come!  God promises us that one day when he returns to take us home that there will be no more sorrow, pain, sickness, death, or crying……..perhaps the joy will come back on this earth, but I know it may not.  That is why I cling to God’s promise of Heaven; knowing that Hannah’s miracle WILL happen and I long for that day…….

Oh my friend, if you are reading this and you don’t know Jesus…..I beg you to seek Him with all your heart, find Him and know Him.  People have asked me so often how I do what I do.  My response is easy……God’s grace….without Him I would have runaway by now.  I am only as strong as the strength in which He alone provides.  I can ONLY do this through Him because I have the faith and hope that He will never leave me nor forsake me and that He carries me when I can’t take another step.  He gets me out of bed each day, He is the reason I press on and fight and He is the reason that I can do what I do day in and day out.  No one else gets the credit…..I promise you I would have given up a long time ago if not for Christ.  So, I don’t possess strength on my own…..it only comes from God and some days He gives me just barely enough to go on; those are the days He wants me to be still, listen and fully rely on Him.

Please continue praying for us.  Your prayers are sustaining us and carrying us through this.  Please pray specifically that this new medication will work for Hannah without the terrible side effects occurring.  God bless each of you for walking this journey with us.

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Until next time………..

Consider My Toes Officially Stepped On and Please Pray

Today, this is a comment I left on Facebook under my last blog post after so many had commented:

Thank you all for your thoughts and prayers. I am sitting here this morning after the horrendous day yesterday and feeling so helpless. Seizures, many deficiencies, autoimmune issues, PANDAS, scoliosis, heart issues, gut issues….the list goes on and I feel completely broken and helpless. Your prayers for us are sustaining us. I am even at the point I don’t know how to pray anymore. We NEED answers/help and treatment for our precious little girl. I have seriously watched her suffer on a daily basis this past 3-1/2 years and I just want her to not suffer! I want her to LIVE and THRIVE and she isn’t doing either. I know I have heard many times that suffering is part of life and that it brings us closer to God and makes us stronger but I also feel that so many people (Hannah included) never catch a break and seem to suffer daily……I don’t understand and I truly never will. My faith is in my God and I know with all I have He will never leave us nor forsake us but I just feel so sad, so lost and so broken today. Thank you for your continued prayers for us……Thursday is a big day……I am dreading it in so many ways but praying that Dr. Winsett will listen, hear and know what to do to help.

**For those who follow this blog and are not on Facebook…..Hannah was in the hospital yesterday for the ACTH stimulation test.  Prior to the test she had a grand mal seizure, fortunately in front of the nurses and doctors.  I declined a Neurology consult for many reasons but we did see our Endocrinologist (fortunately he was on call in the hospital).  We discussed many issues in detail and we decided to continue on with the ACTH (adrenal function) testing.  Thursday we will see our Neurologist in Gainesville.**

After I typed that Facebook comment, Dennis called and he could tell in my voice something was wrong.  After he asked, I told him that I was angry at God.  Yes, I said that!  I further said that I don’t understand how any good can come from Hannah’s suffering the past 3-1/2 years.  After her seizure in the hospital yesterday, inwardly I kinda snapped.  Questions flooded my heart, soul and mind and NONE of those questions can be answered by a pastor, a doctor, a friend, a family member, a nurse…..I have so many questions and still no answers and it makes me angry, sad, broken, helpless and leaves me at a loss that I cannot put into words.  I have literally watched this precious little girl who God created suffer…..DAILY…..with no end in sight and I don’t know what to do to help.  I don’t know how to fix it…..I pray daily for God to put an end to her suffering and yet, the suffering some days gets worse than the day before.

So, after hanging up the phone with him, the depression kind of hit me and I felt like doing absolutely nothing.  I sat down at the computer and logged onto Facebook and NO LIE, the first 2 posts that popped up on my feed were the following 2 things:

A video of an old gospel hymn.  As I watched it and listened to the words (even though I have heard them MANY times before) tears streamed down my face.  Through It All……

“Through It All”
(written by Andrae Crouch)
(recorded by Andrae Crouch & The Disciples)

Verse 1
I’ve had many tears and sorrows,
I’ve had questions for tomorrow,
there’s been times I didn’t know right from wrong.
But in every situation,
God gave me blessed consolation,
that my trials come to only make me strong.

Chorus
Through it all,
through it all,
I’ve learned to trust in Jesus,
I’ve learned to trust in God.

Through it all,
through it all,
I’ve learned to depend upon His Word.

Verse 2
I’ve been to lots of places,
I’ve seen a lot of faces,
there’s been times I felt so all alone.
But in my lonely hours,
yes, those precious lonely hours,
Jesus lets me know that I was His own

Verse 3
I thank God for the mountains,
and I thank Him for the valleys,
I thank Him for the storms He brought me through.
For if I’d never had a problem,
I wouldn’t know God could solve them,
I’d never know what faith in God could do.

I am still crying as I read those words again.  Then, the 2nd post to pop up was from my friend Lyndsay Almeida.  She had posted this quote 23 hours ago from a book she is reading called “The Grave Robber.”

“As a parent, I want to protect my kid from pain and suffering, but sometimes pain and suffering can have a sanctifying effect on our kids. So if our goal is that God would glorify himself through our kids, then we can’t pray away every problem.” – Mark Batterson, The Grave Robber #ugh #sotruebutSOhard #james1

OUCH!  OUCH!  OUCH!  My toes after both of those posts were officially stepped on.

I am not perfect.  I am just human.  But, even with that knowledge that God understands I am not perfect and just human, I still have to give Him my faith and show my faith that He has this.  I can’t doubt Him or question Him.  I especially should not get angry at Him, although this wasn’t the first time.  Does my heart ache?  YES, more than any way I can ever put into words.  Do I understand why Hannah has to suffer?  NO, I so wish it were me and not her.  I would give my life in a nano-second if it would heal Hannah.  I would graciously and willingly take this from her, but I can’t.  All I can do is TRUST AND BELIEVE that God is going to use all of this suffering and pain for His glory.  If I lose sight of that then the evil one wins and I will not let that happen.  So, I am picking myself up, asking for forgiveness and pressing on.  I am praying for wisdom for our doctors, our nurses, Dennis and me as we get through the Neurology appointment on Thursday and as we face the Orthodpedic appointment soon.  I know God has this…..I just need to trust and let Him have control.

No matter what I have to trust Him…………

****I wrote this blog post prior to several events that happened with Hannah today.  Before I had the chance to publish this Hannah regressed horrifically.  I am not going to go into detail about what happened but she had several “episodes” one of which I caught on video.  It is the most heartbreaking video but it shows just a glimpse of her suffering…….please pray for my little girl…..please, please pray!****

Until next time………

 

So Far This Year, Update On Hannah and Specific Prayer Request

So far this year……I have failed at every single thing.  I am already emotionally, mentally, physically and yes, even spiritually drained and exhausted.  Hannah is in a flare.  Dennis is in Texas.  I am doing the least amount necessary to survive.  But, with that said…..I am NOT GIVING UP.  I will continue to put one foot in front of the other and press forward; just sometimes those steps forward are extremely teeny, tiny baby steps….but still moving and that is all that matters, right?

Onto more important things…..HANNAH!

Okay, so the past 6 plus weeks have been HARD!  She is struggling.  Insomnia has become one of our biggest issues.  We have even resorted to making her a “cocktail of drugs” at night before bed just to get her to sleep; as it has taken 2-4 hours most nights just for her to fall asleep not to mention staying asleep (which is something we have been struggling with since the beginning of PANDAS).  She is in a flare, so we know that is part of the problem but this insomnia started while we were in Georgia for Thanksgiving and we aren’t really sure why…….this past Friday we went to our ENT, who has always been a huge supporter of us and someone who has always listened to me.  Friday, he did not disappoint and did exactly what I prayed he would do.  After hearing all we have been dealing with since we last saw him he definitely thought it was time for another sleep study which he ordered.  One thing that is concerning about Hannah’s sleep is that when she gets to sleep, she is so restless and even wakes up choking and gasping for air several times a night; which is major cause for concern due to the possibility of obstructive sleep apnea.  So a sleep study is definitely needed and I am thankful that has been ordered.

Now, several specific prayer requests……

  1.  Hannah goes to Wolfson’s Children’s Hospital tomorrow to have the ACTH stimulation test.  This is a test that checks the function of your adrenals.  Your adrenals are extremely important; without them you cannot survive.  Hannah has had adrenal insufficiency for about 2 years now, but our concern is that has gotten worse or it could even be adrenal failure.  There is treatment for both insufficiency and failure but we need to know which we are dealing with first, hence the test tomorrow.  The test will take about 3 hours.  Please pray for Hannah to not be anxious.  Her anxiety causes her much distress, and that stress when your adrenals don’t function properly causes major lethargy, nausea, irritability and can lower the seizure threshold as well.  Please pray she does well and we can get this test done without incident.
  2. Thursday, we will be traveling to UF Shands in Gainesville for the appointment with Dr. Winesett.  He is the Neurologist that we saw in St. Pete and who previously ordered IVIG for Hannah.  IVIG is what gave her back to us from March-August 2015.  After 6 rounds of IVIG, even though those 6 months were a roller coaster ride, we had her back about 80% in August 2015.  Unfortunately, he wouldn’t order any more IVIG and in November 2015, Hannah had regressed horribly again.  Our prayer is that Dr. Winesett will listen to our plight and HEAR us and be willing to order more IVIG or even Plasmapheresis.  Those are the 2 treatments that might give Hannah back her quality of life and at the same time the IVIG would help support her immune system which would mean an end to this horrible isolation at home.
  3. The end of January we go back to Orthopedics to have Hannah’s scoliosis checked.  We were told back in August that it would be at this next appointment that we would be faced with the decision of surgery for Hannah to literally “filet her back open from her neck to her tailbone and insert rods and screws” to fix her scoliosis.  Her curve was at 42 degrees in August and the doctor truly believed at that time that by January (this month), her curve would be at 50 degrees which is when they do surgery.  We have a lot of factors at play here…..her heart, seizure disorder (epilepsy), PANDAS, her mineral and vitamin deficiencies, her emotional and mental instability and this adrenal insufficiency/failure.  All of those things have to be taken into consideration before a big, major surgery like that can be done.  Thinking of surgery to that magnitude for Hannah literally makes me sick to my stomach.  The fear of “can she physically handle that kind of surgery” is very real, not to mention the recovery with all the other things she has going on in her little body.  It is “elective” surgery which means we can say no.  If we do though, the curve will continue to worsen as she grows (and she still has a lot of growing to do) and worsening curves (she has 2 curves, it is in an “S” shape) could eventually affect her heart and lungs, not to mention the pain that she already has from it and how that will worsen.  It is almost like a Catch 22 not knowing what is in her best interest.  We are praying and asking  you to pray with us for wisdom.  The Bible says if we pray for wisdom, God will grant that and that is our prayer.

(James 1:2-6) 2 My brethren, count it all joy when ye fall into divers temptations;

3 Knowing this, that the trying of your faith worketh patience.

4 But let patience have her perfect work, that ye may be perfect and entire, wanting nothing.

5 If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him.

6 But let him ask in faith, nothing wavering. For he that wavereth is like a wave of the sea driven with the wind and tossed.

If that decision has to be made we will need to talk to all of Hannah’s doctors to see what each of them thinks is best…..I trust most of our doctors, knowing they have a God-given knowledge and wisdom and I will trust, especially Dr. Kim, as to what she feels is the best thing to do.  We covet your prayers for this…..we feel so lost and helpless even thinking about this.  If we choose to do surgery it would need to be done in the Spring or Summer of this year.

Those are the BIG things coming up this month.  My prayer is that God continues to give us the strength, grace and peace that can only come from Him, but I will tell you this……I don’t feel real strong right now.  I have really struggled the past 4-6 weeks in asking “WHY” and “How much longer until we get some joy and peace?”  I am only human.  This journey the past 11-1/2 years has been hard.  We have had a lot of good moments in this journey; especially prior to September 2013 but the past 3-1/2 years have been the hardest years of my life.  I feel as if I have aged 20 years in just that time.  I know with all I have that God sees me, He hears me, He knows my heart and He loves me; but some days, it is just hard for me, for Dennis and every day is hard for Hannah.  We continue to ask for your prayers, for wisdom and guidance and for A PERFECT HEALING MIRACLE for Hannah.  That has been and continues to be my daily prayer.  Even when I don’t know how else to pray, I still utter those words to God, each and every day.

Sorry for the long blog…..I haven’t had the time, energy or desire to blog lately but I wanted to update those of you who follow this blog and want specific prayer requests.  I am so thankful for each of you!

And just because she actually smiled for me yesterday.  Here is a picture for you!

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Until next time……….