Brain Pain, Big Dilemma, Heavy Heart and Transparent Living

I am about to explode…..my brain hurts from all the thinking and pondering I have been doing.  I have so much going through my head and I cannot for the life of me shut it off.  Here are a few of my thoughts……

Our Rheumatologist was able to get our insurance to approve IVIG for Hannah.  MIRACLE……or so I thought until I heard it was going to be a very low dose not high dose.  Low dose is wonderful if you are just treating immune deficiency but in a child with PANDAS, low dose can actually make the child worse….UGH!  It has something to do with reactivating the immune system and not treating the brain inflammation; hence a flare in the symptoms.  High dose IVIG not only treats the immune deficiency but also treats the inflammation in the brain reducing the PANDAS symptoms and building the immune system.  High dose IVIG is considered 1.5-2g/kg (which Hannah received back in 2015).  Low dose, is anything from 0.4g/kg-1g/kg and Hannah would be receiving the 0.4g/kg.  So……here is my dilemma……the only way to build her immune system is with IVIG.  But in doing so, with low dose we risk her flaring (which I can’t have happen because I am the one who deals with it and the person she attacks and she has been known to self-harm so that is something we truly want to avoid).  But, without IVIG we are stuck in this “germ-free bubble” forever; but also with IVIG, if she flares, we could still be stuck in this “germ-free bubble” we have had to create.  It is truly a catch 22.  Now, there is a chance (a small one) that she won’t flare and she will do fine.  The question I have to ask myself is…..is it worth it?  Dennis and I are both concerned as we don’t ever want to make her worse; yet if there is a chance we could make her better, do we take it, even considering the risks?  I am so very confused…..praying for wisdom to make the right decision for Hannah and right now I don’t know what that is.  Her first infusion is scheduled for March 29th, so I am praying I know what to do prior to that.  I have talked to several of my PANDAS moms and I have heard mixed reactions……the one thing I have to always remember is that all our kids are different and respond differently to each treatment.  I am in such a difficult place and just so badly want to make the wisest decision for Hannah.

Something else really heavy on my heart (and I am preaching to the choir here) but it hit me this week……be so very careful about the things in your life that you complain about to others.  Those things you take for granted and complain about could be the very things that someone else is longing for.  I had this happen to me this week and it angered me and then made me very sad.  Of course, then I looked at my own life and realized I was probably guilty of the same thing.  We all have things in our life that we take for granted (I have tried the past few years to be more cognitive not to take the good things in my life for granted), but sometimes I still do.  But, when that happened to me this week it hit me just how nonchalant we can be when venting our problems or complaining to others about things in our life that we want to change; yet those things could be exactly what others have been praying for and longing for.  I have really struggled this week with that realization.  Knowing I am guilty of it myself and then being on the receiving end of it was truly devastating to me.

Speaking of taking things for granted……OH how I struggle with this.  There are several things in my life I took for granted prior to Hannah.  I won’t list them here but now…..oh the ache in my heart that I can’t have those things I once did.  I encourage you to look at your life and the really good things and be thankful for them, because one day, without warning they could be gone and it will leave a hole in your heart…..trust me on that.

Now, this is for my caregiving friends……..those who sacrifice everything to care for a parent, child, spouse……TAKE CARE OF YOU!  Please hear me when I say……if you don’t take care of yourself you will be no good to the loved one you are caring for.  There is a thing called Caregiver/Compassion Fatigue.  The following excerpt is from the Caregiver Space website:

“Compassion fatigue is caused by empathy,” he explains. “It is the natural consequence of stress resulting from caring for and helping traumatized or suffering people.” According to Portnoy, burnout and compassion fatigue may overlap.

The American Institute of Stress, in the definition section of its website, describes this acute stress as “vicarious traumatization” because it’s caused by working with those who are suffering from the consequences of a traumatic event. The symptoms of compassion fatigue can be worrisome and include:

  • less ability to function
  • more stress than usual
  • caregiver feels traumatized
  • working harder, getting less done
  • irritability
  • feeling bored
  • more sickness, aches, and pains

I cannot emphasis enough how important it is that you take care of yourself BEFORE this happens.  I have almost waited too long.  In full disclosure and honesty I have started seeing a Psychiatrist to help me through what she has diagnosed as a form of PTSD.  Yes, not the kind that military members have but something similar.  There is help and I have hesitated speaking out about this but again, I choose to live authentically and transparent so that perhaps I can help someone else in their journey or struggles.  I fought this for a very long time (seeing someone) because let’s face it…..it appears to be a sign of weakness but actually it is just the opposite……it takes a strong person to admit they have a problem and to take the correct steps to fix it.  I heard a lot growing up that you only rely on God to fix your problems and all you need is God, not a counselor or a therapist…..just God.  In my personal opinion I feel that God has equipped men and women (Psychiatrist, Psychologist, Counselors, etc) to help people through their difficulties.   Shocker, there are also medications that can be prescribed to help as well.  If you are struggling, take the first step to help yourself so you can continue to help care for your loved one.  You will be better for it.  Oh and treat yourself to manicures, pedicures, dinner out……do something for YOU!  Take the time for YOU!  I might also throw in here to get some exercise and eat healthy (trust me, you will feel so much better).  I am in the process of taking all of these steps and I encourage you to do the same before you get to the place I was in…..trust me, living in my heart and head was not pretty and I am fixing that!

I probably should have saved this for a different post but it was on my heart and mind now and I rarely find the time to blog anymore so there you have it.  No matter what you are going through always remember you are not alone, God loves you so much and wants what is best for you.  Please take care of you.

A picture of Hannah from this week. I finally got her outside for a buggy ride. Please continue to pray for my sweet girl……

Until next time………

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Hard Truths

Life is hard.  Life is sad.  Life is a plethora of puzzle pieces that sometimes are so scrambled that finding ones to fit together seem like an impossible task.  That is where I am right now.  Here are some hard truth revelations that I have been hit with the past few weeks:

  • The other shoe will drop…..eventually…..wait for it.
  • You can be in a roomful of people and feel MORE alone than if you were truly all by yourself.
  • Life will throw you curveball after curveball and there is nothing you can do about it.
  • Sometimes you have to seek help and sometimes that help will be in the form of a doctor and medication.  Word to the wise here too…..don’t judge someone if they end up going in this direction.  AT LEAST they recognize they can’t do it alone and are strong enough to seek out and ask for help.  Don’t tell them God should be enough……sometimes God gives us the wisdom to seek out someone that He will use to help.  It is not a sign a weakness; but rather one of strength and wisdom.  I cannot tell you how many times I have heard people judge others who seek out help.  Shame on anyone to judge in that manner.
  • You will come to times in your life where you are barely hanging on by a thread.  Some people live life this way and they are Super Hero’s to me for still hanging on.
  • Life is lonely.
  • Sometimes you have to decide that some people just don’t matter in the whole scheme of things.  Some people will just never like you and you know what…..it is okay.  Move on and don’t worry about the opinions or feelings of others towards you.
  • Past hurts will always haunt you at the least expected times.  It is true that hurts never completely heal…..sometimes those scars can reopen without any advanced warning.
  • Live your life the best you can.  Don’t worry about how others live their life; their’s is not yours to live and visa versa.  I look around all the time and see people who just seem to have it all together.  The perfect home school life, the most well-behaved kids, the mom that gets up every morning looking like a million bucks (trust me I look like I am homeless most days), the mom and wife that does it all (work full-time, help with homework, cook gourmet meals, keep a spotless house, keep laundry caught up, have lunch with girlfriends, go to Bible study, church, take kids to all their extra curricular activities, take care of their husband and all his needs)…..you get the picture.  Maybe that is you, maybe it isn’t (for the record I do all those things badly right now)…..but the thing is you just need to do the best you can.  Stop the comparison.  Stop trying to be like “so and so”…..just be yourself and do what you can and do what works for your family.  Circumstances in life can define your capabilities but the good news is one day (hopefully) circumstances will change and you can do more…..(I am still waiting and praying for this one).
  • More often than not your circumstances will one day be used to help someone else.  Keep that in mind on your weakest (want to give up days).  I am a firm believer that there is a purpose for your pain and a reason for your heartache.  I know God can take the hardest times of our lives and use it in ways you will never understand until later down the road.

  • Fully Rely on God…..Never give up……Keep pressing on; even when it would be easier to quit.  You can do this.  You have to.  In life we have no choice in our circumstances but we can choose in how we deal with those circumstances.  Do your best, always……you can do this!

Take this blog post anyway you want…..it may all be about me, it may not.  The hard truth is though, I think some of this can apply to us all in one way or another.  The bottom line is TAKE CARE OF YOU.  Until you take care of yourself fully you will be of no good to anyone else.  It has taken me 12 years to learn this……easier said than done too especially if you are one of my mom friends raising a chid with special needs……taking care of yourself cannot be a priority but it is a necessity.  Finding the balance to do that is often an extremely difficult task.  I get it more than anyone.  Keep pressing on, no matter your circumstances and remember you are never alone!

 

Until next time………

A Glimpse Into Hannah’s Heart

I have hesitated writing this blog post but I decided that I wanted my friends, family and blog followers to get a glimpse into my little girl’s heart.  The past couple of weeks have been rough to say the least and yesterday she spiked 103 fever with some worsening of other symptoms and it has carried into today.  Not fun for either of us but even in her weakest and sickest moments there are a few things that have stood out to me.  She has been saying a prayer the past few weeks and we have had some “conversations” that I am going to share.  I put “conversations” in parenthesis because her conversing is broken and limited but she knows how to say what she needs to for it to get across to Dennis and me.

Every night at bedtime I pray with her.  I lay in her bed, hold her hands and she prays, then I do.  The past few weeks I have prayed over her in ways I never have for healing, peace, calm, sleep, rest and for her to feel the Lord’s mighty hands on her.  As I pray out loud she will comment at various times.  The other night I thanked the Lord for preparing a home in Heaven for us and Hannah spoke……”Lord, Hannah go to Heaven with Jesus now….okay mama.”  I got all choked up when she said those words.  Tears started flowing and I couldn’t speak.  Hannah said, “don’t cry mommy, it will be okay.  Mr. Gaither no more tears Heaven with Jesus.”  What she was saying was that in a song she loves that David Phelps (he was a member of the Gaither Vocal Band) sings, it talks about no more crying, pain or tears in Heaven.  I laid there with her and the thoughts that ran through my mind were……she is so ready for no more pain, sorrow, tears and sickness.  She is so ready to meet Jesus.  She talks all the time about going to Heaven and seeing Grandpa (my precious grandpa), “Aunt” Angie (my best friend who passed away from cancer), Maw-Maw (Dennis’ grandmother) and Thomas (Maw-Maw’s cat).  Yes people, cats go to Heaven too; don’t tell me otherwise either!  LOL!  Her faith…..she has never seen Heaven.  She has never seen Jesus (not that I know of anyway).  She can’t really comprehend His birth, death, resurrection and ascension….she doesn’t “get” all of that but she KNOWS AND BELIEVES He is real and Heaven is real.   She knows He has a place for her and she is ready to go.  I remember as a child begging God not to come yet!  I wanted to grow up, get married, have a career.  I grew up under the preaching of Dr. Homer Lindsay Jr and he preached constantly about the Lord’s return.  I remember thinking I didn’t want Him to come back until I had lived all my life.  Now…..well, He can come get us right now as far as I am concerned.  But…..my point is…..my child, my precious little girl….she is ready…..right now….today…..this very minute and in some ways that breaks my heart.

The other day we were talking and out of the blue she said, “Jesus loves Hannah, Hannah loves Jesus.”  I told her that was so true.  She said, “Hannah ready mama.”  I asked what she was ready for and she said, “Go be with Jesus in Heaven.”  Cue the tears again.  The tears are the heart shattering type tears in one aspect and proud/happy tears in another aspect.  I am not ready for her to be ready for Heaven.  I mean, what parent wants to hear their child say they want to go live with Jesus now?  But, at the same time I am so thankful that she is resting and trusting in His promises and she believes that one day there will be no more sickness, sadness, sorrow, pain, heartache…….one day, all that she has gone through and is going through is not going to matter.  She is going to be well, whole, healed, happy…….wow, to have that faith as a child; a child with Down Syndrome no less.

The song she loves that she wants to listen to all day long is called “No More Night.”  Here is the link to the video.  If you were raised Southern Baptist I am sure you have heard this song before.  I had MANY times but it brings a whole new meaning to me now……if you don’t want to watch the video (I highly encourage it because David Phelps can sing) but the words are typed below in case you just want to read them.  The chorus is in bold…….

 

The timeless theme, Earth and Heaven will pass away
It’s not a dream, God will make all things new that day
Gone is the curse from which I stumbled and fell
Evil is banished to eternal hell
No more night, no more pain
No more tears, never crying again
And praises to the great, “I am”
We will live in the light of the risen Lamb
See all around, now the nations bow down to sing
The only sound is the praises to Christ, our King
Slowly the names from the book are read
I know the King, so there’s no need, no need to dread
No more night, no more pain
No more tears, never crying again
And praises to the great, “I am”
We will live in the light of the risen Lamb
See over there, there’s a mansion
Oh, that’s prepared just for me
Where I will live with my Savior eternally
And there will be no more night, no more pain
No more, no more tears, never crying again
And praises to the great, “I am”
We will live in the light of the risen Lamb
All praises to the great, “I am”
We’re gonna live in the lights of the risen Lamb
I covet your continued thoughts and prayers for my little girl.  She is struggling.  I am struggling.  Dennis is struggling…..but, through it all we are resting in the promises of our Lord……there will be no more night, no more pain, no more tears, never crying again……..
God Bless each and every one of you!
Until next time………