I Remember You

There are so many things I could say right now.  So many things I would like to say and get a response but that isn’t possible.  Today though, I just want to take a minute and remember you.  I want to think about the good ole’ days, the fun we had, the memories we made and the friendship we shared.  The slumber parties, the music videos we made, the fun times hanging out at our favorite places, all the date-less Friday and Saturday nights that we spent together while everyone else had boyfriends!  The secrets we shared, even right before the Lord called you home and the heartbreaks that we saw each other through.

Today is bitter-sweet.  Today is your birthday, but you aren’t celebrating it here on earth; because, unfortunately (for us) you are no longer here but in Heaven with Our Lord.  I miss you everyday, but today especially.  I miss your friendship.  I miss your wisdom.  I miss the laughter, tears and joy we shared over our 40 year friendship.  July 28th comes around and I wish I could celebrate with you just one more time.

Oh my dear Angie, how do I pay a tribute to you that is worthy of the friend you were to me for 40 years?  How do I show the love, respect and value that you were not only to me but to EVERY SINGLE PERSON that had the honor of knowing you?  How can I possibly show the world just how special you were and most importantly how do I share with your sweet family the impact you made on just my life alone; not to mention all the other lives you touched along the way?  How do I thank you for the friend you were to me through the good and bad times?  The way you were ALWAYS there for me, especially when I was making mistake after mistake. Yet, instead of judging me, you loved me, encouraged me and prayed for me.  Then, after I came to my senses….you never said “I told you so,” even though you could have more than once!

I remember you every.singe.day.  I miss you every.single.day.  I wish I could just have one more day with you to tell you just how loved you are and share with you from my heart the kind of friend you were to me….the best, the most loyal, the most trustworthy and the most faithful!  As I sit here and type this memories are soaring through my mind and I find myself crying and laughing.  What most people don’t know about you is that as sweet, kind and loving as you were you also had quite the sassy side!  If it ever came to your attention that someone had gossiped about me or hurt me you threatened to not only give them a piece of your mind but also a beat-down!  HA!  I remember more than once you would get so mad (in your very gentle way) and say, “let me at them…I’ll teach them a thing or two.”  Oh, you always had my back, like no one ever did or has since!  You were my sounding board, my greatest encourager, my “tell it like it is” in the most gracious and loving way and the one person that I went to for Godly wisdom and always the person I shared my heart with and deepest secrets because I knew both of those were safe with you.

I don’t know how to write anything worthy of you.  I don’t have the eloquent and adequate words to describe ALL that you did for me, ALL that you were to me and just how much I miss you; not just today on your birthday but everyday since you have been gone.

You would be so proud of your family.  Your parents are the absolutely strongest, most Godly, most loving, most gracious people I know (I see exactly where you got it from).  Your brother Wally and his beautiful family have encouraged me so much since you have been gone and have reached out to me at just the right times to let me know how much you loved me.  Sweet Mark and your children are so precious and you would be so proud of all 4 of them.  I have watched all 3 of your children grow so much and I know how proud you would be.  They love and miss you but you instilled the hope of Heaven and the promises of God into each one of them and they know they will see you again!  What a day that will be.  I know I will have a very long line to stand in before I get to hug your neck in Heaven and get my time with you; but it will be worth it no matter how long I have to wait.  No one I know has made a greater impact on people than you did.   Your 4 year battle with cancer and the way you carried yourself and the unwavering faith that you had touched more hearts for The Lord and eternity than we will ever know.  Oh my friend……God used you, but not just in the last 4 years of your life……He used you in the 40 years that I was blessed to call you my best friend.  He used you to touch my life in so many ways; but especially for Him.  I have so much to thank you for and I am just so sorry I never had the chance to adequately thank you for ALL you did for me.  YOU gave me strength in some of my darkest days and YOU encouraged me and loved me when no one else did.  YOU gave me hope and pointed me in the right direction more than once.  YOU always thought of me before yourself and YOU loved my Hannah as if she were your own!  I am forever grateful, forever changed and forever indebted to you for ALL you did for me.

Happy Birthday my dear, dear friend!  I miss you more than words can say and I wish I had a way of properly honoring you and your family today and every day.  I promise you this…..I pray daily for your entire family and I will always be here for them just like you were always there for me.  As I told you the night before the Lord called you home…..this isn’t goodbye; this is see you soon!

Happy Birthday!  I love you!

Me, Angie, Whitney and Misti

Me, Angie, Whitney and Misti

Until next time……….

 

 

Ten Years

WOW!  It is true what they say….time flies.  So much of the past 10 years is a blur and in all actuality there is so much of it I would like to forget (including this past 3 weeks and especially yesterday).  But, through every up and down and twist and turn; there has been much joy too!  Ten years ago today at 6:29am a 6 pound, 0.1 ounce precious little baby with blue eyes and a head full of black hair entered this world.  She was born 3 weeks early and has kept her daddy and me on our toes ever since.

I wouldn’t change this life for anything.  I wouldn’t reverse the decision to “proceed with my pregnancy” after the doctor at the high-risk group told me “abortion is your only option because the fetus is going to die anyway.”  I wouldn’t change Hannah.  That so-called “decision” that we made to proceed with our pregnancy was absolutely the ONLY choice to make….Life….ALL LIFE IS PRECIOUS, even those deemed “imperfect” in the eyes of this world.

Yes, I would like our circumstances to be different (with her health issues), but change this family….NO WAY!  I have said many times and I will say this until the day the Lord calls me home, that God gave Hannah to us for ME!  She has had more influence on my life than ANYONE EVER HAS.  Having her caused me to stop putting myself first, above everyone and everything.  She has shown me what true, unconditional love is and has given me a very small glimpse into how much God must truly love His children.  I never knew love to that depth until Hannah.  I have people in my life I truly love but until Hannah…..it was not unconditional love.  She showed me and continues to show me what strength looks like; what perseverance is and how to handle any difficulty that comes your way.  I was not a “strong” person prior to Hannah.  I was actually a doormat.  I didn’t know how to say the word NO.  I was a people-pleaser and never stood up for myself.  I would backdown to keep peace and I allowed people to control me.  Hannah changed ALL of that.  I learned to be independent. I learned to stand on my own two feet and I learned what real sacrifice was.  It wasn’t about me, me, me anymore.  It was about Hannah; her needs, her life, her health and her happiness.  I gave all that old life up and I have NEVER once looked back.  Do I miss some things…..I would be lying if I said no.  I miss the freedom to come and go.  I miss working (believe it or not).  I miss the friends, colleagues and personal relationships that I had and that feeling of accomplishment when you completed a task.  I miss shopping whenever I want and I miss the money that we used to have (but we didn’t realize we had it).  HA!  So, yes….there are things and people I miss, but this journey that we began 10 years ago today has taught me more than I had ever learned in my 43 years.  Love, honor, loyalty, perseverance, faith, trust, respect, what really matters in life, thankfulness, real joy (not temporary), struggle and overcoming, hope, peace, forgiveness and the list goes on.

Today, we celebrate Hannah.  Today, I thank the Lord for allowing me the honor and privilege of being her mom.  Today, I thank God for 10 years because in all honesty, we weren’t sure with her heart and health issues that she would live this long.  Today,  I will sing Happy Birthday to Hannah (even though I can’t sing to save my life) as many times as she wants to hear it.  Today, I celebrate HER…..it might not be the celebration she deserves because of stupid PANDAS but we will do the best we can.  Today I am thankful……today, no matter if it is a good or bad day I will remember July 27, 2005; that moment I heard her first cry as the doctors whisked her off to the NICU and not even seeing or holding her until 8 hours later.  Today, I will remember and see just how far we have come and how many times the Lord has carried us, sustained us and given us strength.  Today, we celebrate our “PERFECT” (in His sight and mine too) little girl who truly changed my life.

Happy Birthday my sweet girl…….your daddy and I love you to the moon and back.  You are our VERY special gift from God and there is no greater joy or honor than for us to be your parents.  You are our world……We love you!

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Until next time……..

Longing……

As I have gone about my morning I have found myself longing.  Longing for many things for myself and for my family, for our country, for friends…..I find myself sad and broken for not only my current situation but for SO MANY people who are hurting and for a country that is broken.  Where right is wrong and wrong is right.  Where children aren’t safe and families are torn apart and broken.  Where there is more attention put on things of this world instead of things of Heaven.  Where God no longer matters and His Word is no longer thought to be true.  Where there is political correctness instead of truth.  Where people live to defy everything this country was founded on, including God!  Where people try to rewrite history and where ALL lives should matter, but they don’t.  Where people gossip and backstab and find joy in other’s misery.  My heart hurts and I find myself longing………

Longing for healing

Longing for peace

Longing for joy

Longing for love

Longing for truth

Longing for Jesus

Longing for Heaven……..

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Until next time…….

 

This Isn’t Motherhood

Hannah woke up angrier than usual today and so far by 10:15 this morning I have been attacked (hit, scratched and kicked), she has thrown her p.j’s and laundry hamper across the bathroom and her negative talking has been more persistent than usual.  Lots of “no good girl, scratch mommy, hurt Hannah, no love people, Hannah mean…” etc…..I have cried….LOTS!  I don’t know how to do this.  I don’t know what the hell I can do to fix this…..I am broken today.

This isn’t motherhood…..it is more like being the Warden in a prison.  I know, horrible comparison but it feels like that.  I am here to make sure Hannah doesn’t do anything to hurt herself.  I have to leave her alone.  I can’t read to her, I can’t do schoolwork with her, I can’t have a tea party with her, I can’t watch TV with her (unless I am on the opposite end of the sofa)…..I can’t do anything with her in close proximity.  This isn’t motherhood…..I can’t do “mommy” things.  I can’t even touch her…..no hugs, no kisses…..nothing.  She won’t have it!  I cannot get in her personal space without being attacked.  Yes, she is THAT angry!  The “look” in her eyes is devastating to this mama’s heart and I just have to leave her alone.

As I type this, she is in her room playing.  I can’t go in there and play with her.  If I go in, she gets angry.  If she can’t attack me, she attacks herself and there is nothing worse than watching your child hurt themselves.  I would MUCH rather her hurt me…..I am just lost…..this isn’t what I thought being a mom was going to be.  Sad thing is, I have met many mom’s since this PANDAS journey began that experience this same thing day in and day out and they have endured it much longer than I have.  It breaks my heart in a bazillion pieces; for them, for our children and for me.  I don’t know what to do…..all I know is this is not motherhood…..this is not what I thought I was signing up for……this is a devastating journey we are on and I don’t know how to fix it or if it will ever be fixed.

I do wonder MANY times each day if we will ever get the “old” Hannah back.  If there really will be a healing here on earth and if our lives will ever be peaceful again.  I am worn…..emotionally, mentally, physically and spiritually.  But, what do you do?   You press on, you persevere and you “put your big girl panties on and suck it up.”  I am trying…..today is just hard…..I HATE….no DETEST Sunday’s!  WORST DAY OF THE WEEK!  I wish I could sleep through Sunday’s…..seems they are always my worst day…..Satan just LOVES to torture me on the Lord’s Day!  UGH!  I know…..whaaaaa, whaaaa, whaaaa!  Yep, pity party day has commenced…….think I will go scrub my toilets now!

Truth!

Truth!

Sometimes you just have to laugh!

Sometimes you just have to laugh!

Until next time………

 

Important Lesson Learned: Sharing In The Joys Of Others

I have failed MANY times over the last ten years when it comes to sharing in the joys of others.  I have found it easier to focus and concentrate on my own circumstances rather than realizing how important it is to share in others joys.  It is easier for me to share their heartaches because I know that feeling SO very well; but to rejoice takes work for me and it has been easier to stay away and wallow in my own self-pity at times.  It is difficult to put that smile on my face when my insides are breaking; the past 2 years have been incredibly difficult to do that and so I have done the “typical” Facebook post, tweet or text with my congratulations and left it at that.

God has done a huge work in my heart regarding this lately.  I know that I need to change my “attitude” and to diligently try harder, in spite of my circumstances, to rejoice and be happy for others in their good times and good fortune.  Of course, it is always important to be there for them in their difficult times, as well.

My life over the past ten years has been unlike most and I have been all consumed with my valleys and I haven’t taken the time to rejoice with others on their mountain tops.  Whether it be weddings, baby news, birthday’s, new jobs, new homes, etc…..I have been lousy at truly conveying my joy with them.  I am always happy to see others blessings, but to really share in it is something that I haven’t done well and I really want to change that about myself.  I want to learn to be more “present” in the lives of others.  It is hard for me, because I am stuck here at home most of the time.  I have some evenings available but I don’t want to be away from Dennis and Hannah every night so I have to really pick and choose what I am capable of doing without it interfering with my family; but I want to make more of an effort.

I am learning that sometimes when we take our eyes off of our own circumstances  (good or bad) and share in others mountaintops and/or valleys’ that we will be blessed too.  I don’t want to just sit here so self-absorbed and consumed with my own circumstances.  I want to be happy for others.  I want to truly be an encouragement and I want people to know that they can share their good and joyful news with me and know that I am TRULY happy for them.  Just because I am walking a somewhat difficult journey doesn’t mean that it keeps me from being happy for others.  I could sit here and list off a ton of friends and family members that have WONDERFUL things happening for them and I am indeed happy for each of them.  I can honestly say that I don’t hold ill-will or jealousy for those having blessings and good fortune.  I have “grown up” enough in my life to truly share in others joys; I have just not been good (actually been very lousy) at conveying that joy for them properly.  I want that to change.

I had the honor of taking dinner to my cousin Brooke last night and meeting her TWO new babies….a little boy, William and a little girl Lucy.  I spent a few minutes visiting with Brooke, Billy and Lilly (their 3 1/2-year-old) and of course admiring the two new additions and for the first time in a very LONG time I felt real joy.  I was able for a few minutes to forget about my own circumstances and truly be present in their miracle and joy!  I left their home feeling so much peace and joy that I haven’t felt in a very long time.  Not because of any other reason than being happy for them and this perfect little family God had given them.  It was a real wake-up call for me…..to be present…..to be happy and to always be ready and willing to share in others good times as well as the bad.

Sometimes we all need to step back and realize that God has us all on a journey….some journey’s are happier than others but I am a firm believer that each journey is special, each journey serves a purpose and each journey is important in God’s Kingdom’s work!  We all have a reason for our life…..the good, the bad, the happy and the sad……we need to share ALL of those times with those that we care about.  After a really difficult week; it was a good lesson for me to learn.

Oh the joys of babies!   Miss these moments with Hannah!

Oh the joys of babies! Miss these moments with Hannah!  I think I could have held Lucy all night long!

Until next time………..

 

 

Maybe It’s Me

Please excuse all my blog posts this week…..obviously I am in need of lots of therapy.  Might have to actually hire a therapist sooner than later!  Oh, who am I kidding….it’s WAY too  late for “real” therapy!  HA!

I am in that “maybe it’s me” stage of this life.  What have I done….what do I do…..what can I do….where am I going wrong?  All those questions that seem to have no answers.  It’s like banging your head against a brick wall over and over again trying to understand and figure out what has gone wrong and what you can do about it.  I am sure I am not the only mom in America that feels this way; at least I hope not.  If I am, then I seriously need help!

I am beginning to think that Hannah’s anger, because it is so directed at me; that it IS me!  I can’t help but think, at times, that it is directed towards me for a reason whether consciously or sub-consciously.  I know she has a “disorder” or “disease” (whatever it is being called right now) that makes it happen, but WHY does she have to direct it all at me?  It is getting OLD though and when you can’t console or love on your child; it leaves you so lost and not knowing what to do.  That is where I am today.

Today started off pretty good.  I even received a big hug and kiss when Hannah woke up this morning but at about 11am, we went downhill rather quickly!  She was in her room playing and I went in there and sat on the floor with her and she got the “look in her eyes.”  That look like “you had better get out of my reach because I am about to try and scratch or hit you.”  Yeah, that look and fortunately I was quicker than she was today and jumped back as she lunged towards me.  I then gently took her by the wrists and sat in front of her and said….”Hannah, why?  Why do you try to hurt mama?”  Her response was “no hurt mommy any, any, anymore.”  Of course, it was still in her eyes….a blank, dark, scary stare.  I knew the moment I let her wrists go it would happen again, so we sat there for a few minutes.  The look was there but I let loose of her wrists and she did it again.  By this time, my eyes are burning from the sting of the tears gathering in them and as a single tear trickled down my cheek she looked at me and said, “love mommy, no hurt mommy any, any, anymore.”  She “gets it” but there is something in her brain (a mixture of OCD and inflammation) that she cannot control to save her life.  I am her target and it breaks my heart.

When she is like this I can’t eat……I can’t sleep……I can hardly put one foot in front of the other to function.  I get done what I have to; the laundry and house are clean and there is food on the table….but that is about all I muster doing.  Sometimes I find myself sitting in the doorway of my bedroom while she is in her bedroom playing.  I can’t see her but I can hear her talking….she chats constantly to herself.  Most of the words and phrases I understand and it is usually all directed at medical jargon.  She is giving medications to her dolls, setting up IV’s, giving them check-ups and baths.  I just sit and listen.  She mimics all she knows and the fact that all she knows is sickness, medications and medical terminology breaks my heart.  Some days I just sit there, unable to do anything else and I wonder why and I wonder what I could do differently to change all of this.  I wonder if it truly is me?  I have thought that maybe I need to take a little trip, alone.  Leave her and Dennis here and just go away for a few days and see if she improved.  If she did, then we would know that I am part of the problem.  But, do I really want to know that for sure, because if I am, what do I do about it?  That is almost too much to think about especially when I can barely some days think past getting out of bed.  OH my…..reading that last paragraph makes me sound really depressed, doesn’t it?  I promise, I am not…..well, let me rephrase that…..not depressed enough to do anything desperate…..just sad, lost and grieving today.  Tomorrow might be different…..I pray it is!

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Until next time……….

Numb….At A Loss

I don’t know what else to do, so I write.  I am just numb…..at a loss of what to do, say or think.  I don’t understand this disease and I will never understand why it has affected Hannah.  I know God has a plan and a purpose but I just feel lost.

We had HD-IVIG last Thursday and Friday plus Hannah is still on Prednisone (we always do a steroid-taper after each infusion is completed), and yet she is still raging.  I know there could be several factors.  For one, there could be an antigen/antibody in that particular batch of Immunoglobulin that her body is responding negatively to and she is trying to fight it, thus resulting in a “flare.”  It could be that she is just “flaring” because of being exposed to some bacteria or germ and the inflammation in her brain is more than usual or it could be something else…..not sure what; but I wish there was more research and studies done on PANDAS to give us more answers.  There is little known about PANDAS, especially in the treatment aspect and all patients seem to respond differently to the few treatments that are out there.  We KNOW IVIG has worked.  We have seen it with our own eyes.  We have watched her go from extreme anger, aggression, rage, sadness, OCD, tics and anxiety to getting her almost completely back.  Then she regresses and we do more IVIG and she is back again, regression, back again and so on.  So, we know IVIG has worked but I am not sure why this time is different.  Her 3rd infusion, this happened and it lasted 10 days after the infusion and then like a light-switch she was back….happy, loving, sweet, kind……

Hannah is very angry now…..one minute she is fine and then like a light-switch, she is angry and raging.  I am the one with the target on my back.  If Dennis and I are standing side-by-side, she will always attack me!  I think it is for several reasons.  First, she is with me 24/7!  She also knows that I won’t fight back; I am her safe place and the worst that is going to happen is that we are going to sit with me holding her so she can’t hurt herself or me.  I have heard from other PANDAS parents that it is the same way in their household too.  Their PANDAS child picks one person to target……usually the mom!  It does question then how much Hannah knows what is happening if she can “pick” who to take her anger out on and I don’t have the answer for that; frankly I don’t think anyone knows.  I can hear her in her room right now and she is saying…..”hurt Hannah, pull hair, kick people.”  Those are a few of the things she says when she gets angry…..the way she expresses it verbally.  It is heartbreaking to hear your child with limited vocabulary talk like that.  She is on medications for her seizures, inflammation, adrenal glands, thyroid, ADHD and other things, including a Valium-type medication when she gets out of control…….but, she still rages……numb and so very lost!

We are in a holding-pattern too (and you know for this type A personality, organized, OCD, control freak; that is very difficult for me).  I am supposed to email our Neurologist in St. Pete on Friday to let him know how Hannah is doing.  If she is greatly improved, he will probably order another round of IVIG.  If not, he might decide for us to take a break for a month or two.  That scares me because insurance has only approved for us to get IVIG until September 4th.  If we stay on this track, we will get 2 more infusions before we have to possibly fight insurance again for more.  If we get off track, we might only get one more before the fight begins.  I really like our Neurologist, but he is new in treating PANDAS and is in his words “we are wandering in the dark.”  There are risks to High-Dose IVIG versus Low-Dose and I think because of Hannah’s heart, seizure disorder, adrenal gland issue and some other things that he is very cautious with its usage.  The hope was to do IVIG every 4 weeks for a short time and then go to every 6-8 weeks……not sure if that will happen.  Just at a loss all the way around…….

I think sometimes I do put too much out there but I do want to be honest and I want to encourage someone that might either be going through something like this or maybe one day will. None of us are immune to difficulties and valley’s in our life. I write for my own sanity but also because I have this overwhelming need to let others know they are not alone, even though I know they may feel like it. I feel alone most of the time. I am fortunate that I have a husband that realizes that and encourages me to “get out” when I can; although in keeping it real, it is a major struggle for me to “get out” and do things. I struggle with being a recluse……I struggle with being in crowds and with people now. I never used to, but after being “trapped” in this house for the past 2 years; it has become my safe haven and my comfort zone. I know so many people feel alone in their life and I want to encourage those that do. I have found that you can be surrounded by people and still feel very much alone. It is a very numbing and sad existence, but sometimes I believe God allows it because that is the ONLY way He can get our full attention…..TRUTH (at least for me anyway). I was never good at giving God my undivided attention….too busy, too many more “important” things to do, too tired, the whole “I’ll do it tomorrow” scenario. Always an excuse…..and never a good one. I think part of the reason I am going through this with Hannah was that it was the way The Lord could get my attention and my attention He has! Now, if He would just fix all of this…..but, I don’t think it works that way…….

Thank you for reading my ramblings and if you think about it and if you are a person of faith…..would you continue to pray for us and with us?  I pray for a perfect and complete healing for Hannah……the healing that will bring her back to us 100% and we can get back to the life we had prior to PANDAS.  Hannah’s 10th birthday is in a couple of weeks and my heart is already breaking because the celebration won’t be what she deserves…….no party, no friends, no family……heartbreaking for this mama.

THIS!

THIS!

Until next time……..

Broken-hearted, Crushed In Spirit and Holding On To Hope

Anger, sadness, fear, all-consuming grief, tears (more like sobs), heartbreak and hope…….all emotions Dennis and I have felt the past week.  We have had a really difficult week; especially since last Wednesday as we left to head back to St. Pete for Hannah’s 5th IVIG treatment.  Hannah had declined horribly over the week prior to her infusion.  So bad in fact….I was actually scared of my child.  Her rage and aggression toward me especially, was horrifying and fearful.  I found myself praying every time I had to be in arm’s reach of her.  Praying that she would be kind to me and not scratch, hit, kick or bite me.  More times than not my prayers seemed to fall on deaf ears (although I know with all that I am, that is not true….the devil would like for me to believe that lie though).

Thursday and Friday for her infusions were okay.  She handles them like a champ and I thought to myself that things would be okay again.  We know the cycle…..improvement, plateau, decline….that is the way HD-IVIG works when treating PANDAS.  The hope is that the improvement and plateau’s will last longer each time and the declines will be shorter and shorter until they are no more.  This past month, our decline came quicker and lasted longer even after her infusions.  We traveled home on Saturday (don’t even get me started on the horrendous traffic the WHOLE way home….ugh).  Last night, Hannah raged.  It was literally earth shattering for me because she was supposed to be improving not declining.  We got her to sleep…..I cried all night long.  She woke up this morning and she was not happy, but not angry either.  At one point this morning I took her to the bathroom and she tried to attack me (I say tried because I saw it coming and jumped out-of-the-way).  Then, she went lethargic and FELL ASLEEP while sitting on the potty.  I really do believe that last “attack” was actually a “rage seizure.”  After that happened, like a light-switch she was back…..she played, laughed, read books, sang (at the top of her lungs I might add)….like nothing had happened and she was great the rest of the day.

I was afraid as I was thinking about writing this post that it all would be negative and “pity-party” worthy, but the Lord gave us a much-needed glimmer of hope this afternoon and I am rejoicing in that.  I don’t understand this disease.  I don’t always “enjoy” or “embrace” this life like I know I should.  The Bible says “in everything give thanks,” but in keeping this honest…..I am not always successful at doing that.  I tend to be sad…..like a lot!  I think I have gotten used to this life of “walking in grief with a continuous broken heart.”  What I haven’t felt fully though until this week was a crushed spirit…..that is worse than a broken heart.  I have literally been devastated…..crushed…..broken…..alone and those feelings are some of the worst I had ever felt.  I had nowhere to turn except to God’s Word and He showed me these promises:

Psalm 147:3

He heals the brokenhearted
And binds up their wounds.

Psalm 34:17-18

17 The righteous cry out, and the Lord hears them;
he delivers them from all their troubles.
18 The Lord is close to the broken-hearted
and saves those who are crushed in spirit.

I went on to read:

2 Corinthians 4:6-9 

6 For God, who commanded the light to shine out of darkness, hath shined in our hearts, to give the light of the knowledge of the glory of God in the face of Jesus Christ.

7 But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us.

8 We are troubled on every side, yet not distressed; we are perplexed, but not in despair;

9 Persecuted, but not forsaken; cast down, but not destroyed.

 2 Corinthians 4:16-18

16 For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day.

17 For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;

18 While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal.

I found such solace and comfort in these verses.  The Lord is close to the broken-hearted and saves those that are crushed in spirit….ME!  We are troubled on every side, yet not distressed.  We are perplexed but not in despair.  Our light affliction (even though it doesn’t feel light) is for just a moment and is working for good for eternity.  We don’t “see” what God does in our temporary troubles but God sees those troubles and the impact they have for eternity.  WOW!  What promises from God’s word…..something to cling to when the road gets difficult and the journey seems too much to bear.

I have felt God many times throughout this journey….many times He has picked me up from a “bad” place and carried me.  Sometimes he has used a family member or friend, sometimes my husband, sometimes His Word…..each time He has reached down His hand and led or carried me back….lifted my spirits and healed my broken heart.  Yes, the pain comes again but He has never left me and He promises He never will.  I might never know why we have endured all we have  the last 10 years this side of Heaven….but, it doesn’t matter why; it just matters what I do with it.

Hanging on, pressing forward,  not ever questioning God’s goodness, grace, love or mercy…..all for eternity when NONE of this will matter!

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Until next time……….

Defeated…..Today

I am officially waving the white flag of surrender.  I feel so defeated right now.  No matter how hard I try to deal with Hannah’s regression prior to each infusion or how much I psych myself up that this will pass soon, it never helps.  I know in my heart that “this” Hannah is not my child.  This is a child that is being controlled by inflammation on her brain.  My child is the little girl that I get back for about 3 weeks after her High-dose IVIG.  That is the little girl who is not being controlled by a brain that is on fire.  I want THAT little girl, the one who is not controlled by disease; by horrific inflammation causing her to do and say things that are so far out of character!

Today, the hallucinations returned.  She looked in the mirror on several occasions and went flat-out berserk!  She attacked me until I got out of arms reach and then attacked herself, at one time drawing blood!  I had to stand behind her (so not to get kicked) and hold her wrists out until she calmed down; of course getting away from that danged mirror hanging in her bathroom as quickly as possible.

Defeated…..me right now sitting on my bathroom floor in tears with my iPad trying to find a few minutes of solace and getting myself together so Hannah doesn’t see me cry.  “Big girls don’t cry,” she would tell me!  This big girl has done lots of crying the past 2 years; mostly in private with God and yes, at times yelling at Him for letting this happen to my once happy, well-adjusted, sweet and loving little girl!  “Where did I go wrong, what did I do to deserve this,” I have selfishly asked Him MANY times.  He doesn’t reply verbally but I know He is there.  I know He is listening.  I know He is holding me and I know He is wiping these tears from my eyes each time.  I know He has a reason and I also know it is for good; although on days like today it is difficult to see past the burning, stinging, flood of tears in my eyes.

I HATE THIS!  I hate not having a life.  I hate Hannah not having a life.  I hate feeling so alone and helpless!  Defeat….this is what it feels like and it sucks!

I keep telling myself this isn’t forever.  If nothing else, I have Heaven to look forward to, but I would be lying if I didn’t tell you that I am praying for relief on this earth first!  I wanted this over frankly before it even started, but the fact is, I don’t see the end in sight….at this rate we will continue to have 3 good weeks and then a horrific one!  Yes, granted, it is better than 4 horrific weeks but the point is I don’t want any horrific weeks!  I want peace, joy and happiness!  I know we would have bad days if PANDAS wasn’t in the picture but not weeks of anger, rage, aggression, extreme sadness, anxiety, OCD and tics!  I know that nobody’s motherhood journey is easy, but anything has got to beat this, right?!?!  Maybe not…. maybe I am not alone in my feelings of defeat today.  It just feels like it!

So defeated.  So tired.  So weary.  So over this!  But, guess what?!?!  Tomorrow is another day and prayerfully it will be a better one.  If not though…..we will survive.  We will press on and we will get through it with God’s grace, strength and mercy because without Him I would have waved the white flag of surrender and defeat a long time ago and probably would have seriously run far, far away or at least to Vegas (for those that don’t know Vegas is one of my favorite places ever)!  So, yes, if I ever go missing, most likely there is where you will find me!

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Defeated today but never giving up! Giving up is not an option….

Until next time……..

 

Regression and My Grieving Heart

Warning, this post may be dark and depressing because it is how I feel today…….

Hannah is regressing.  We expect this prior to each IVIG treatment but I can never really prepare myself for it.  I try to…..I really do.  I tell myself, “this child attacking you is NOT Hannah” and “her brain is on fire, she cannot control this.”  But, no matter how much I “prepare” myself and convince myself that I can handle anything; it never fails to break my heart in a million pieces that moment the regression begins.  Then, like a light-switch I have to be
“on guard” 24/7 for the rage and attacking (which happened last night and no, I wasn’t prepared and she drew blood).  I HATE THIS.  I hate not having control of this situation.  I hate that we get her “back” and then in a split second she is gone again until the next infusion!

Now, regarding her IVIG infusions.  We will have her 5th infusion this month and then our Neurologist wants to give Hannah a break from them.  Dennis and I are not too sure we agree with a break because the infusions only last about 3 weeks before the regression begins, but we have no control.  I somewhat understand our Neurologist’s reasoning but I don’t like what it means for Hannah or us after week 3!  I am very nervous and concerned about how that will go.   On top of that, Blue Cross/Blue Shield only approved IVIG until September 4th.  So, regardless of if we get one more after this next one; we still have to begin preparing for a possible fight again with insurance.  Without continued High-Dose IVIG, we will lose Hannah completely again and she will return to where she was prior to beginning IVIG.  IVIG didn’t even begin working until the 3rd infusion so the thought of starting over (if we have to wait months while fighting with insurance), is stressing me out to the point of where I feel like I might break.

I am ONLY human.  I have NEVER once said or indicated that I am strong enough to do this forever.  It is by God’s grace alone that I have survived thus far.  This “existence” is not fun and the roller coaster ride is getting REALLY old.  The thought of making all these steps forward for them just to be reversed and go backwards is something that I cannot fathom nor do I think I can handle.  I have said many times that without the Lord carrying me I honestly don’t think that I could do this….in fact, I know I couldn’t.  I also know that He will continue carrying us but just knowing that all of this could be for nothing, (to get her back and then watch her disappear again) has me grieving in a way already that I have no words for.

I know with all that I have and all that I am that God can do immeasurably more than we ask or think……just read Ephesians 3:20-21

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I believe His Word with everything I have in me.  I trust Him.  I love Him.  I know with my whole heart that He has a plan and that nothing happens to us that He doesn’t work together for our good….I know He has a plan; a perfect one at that…..oh but that danged human-nature, sinful side of me just can’t always just let go and let Him work.  My feelings, my heart, my desires (selfish ones) get in the way and I grab a hold of things I cannot control and cling to those things not allowing God to work…….

Romans8v28,31

I can be so selfish…..I will be honest here (heck what good is sharing my heart if I don’t share the good, bad and ugly too).  I want peace.  I want joy.  I want happiness.  I want perfect healing for my little girl.  I want living, not existing for the 3 of us.  I want hope.  I want to enjoy holidays, family and friends.  I want a vacation.  I want play-dates for Hannah.  I want to take her to school and church.  I want, I want, I want……but that is me being selfish and for that I am sorry.  God has entrusted me with this little girl and there is no room for my selfish desires and there is no room to worry about things I have no control over.  The only thing I have to do and need to do is TRUST Him to carry us and give us the strength that we need for each moment.  He has thus far and I know He will continue…..

Today, my heart aches and yes, I am grieving in a way that I have many, many times throughout this journey but I will press on and I will allow the Lord to complete His work through Hannah and me even though at times I wish He hadn’t chosen the 3 of us for this journey.

Please pray for us……pray that God uses our journey for His glory and that He will carry us through the difficult days ahead.

Until next time…….