Trapped

Trapped…….the word I use right now to describe Hannah.  She seems trapped in herself.  The little girl whose eyes once sparkled and shined when she smiled are now dull.  The little girl who once smiled and radiated joy and happiness is now sad.  The little girl who used to love to cuddle, hug and kiss now rarely wants to love on us or be loved by us.  The little girl who once laughed doesn’t laugh anymore…..trapped…..trapped in herself.

I miss the little girl from 7 months ago.  Heck, I miss the little girl from 6 weeks ago; that is when we started noticing her being trapped.  We started noticing a steady decline and then she was suddenly different.  The laughter stopped, the smiles ceased and her joy was gone.  We don’t know what happened; we just know she isn’t the same.

Our hearts ache……we want answers but the answers we have gotten make us ache more.  We want an easy fix but there isn’t one.  We want her back; but right now she seems so far away.  I have to watch her constantly; I used not to have to, as she would entertain herself for hours; now she doesn’t.  She still runs fevers daily, has a low immune system and alot of tummy trouble; but those things are minor compared to everything else from the last 6 weeks.  She went from 2 medications to about 10 and still……no definite change.  She went from sleeping 12 straight hours at night to just.not.sleeping.  She is restless and full of anxiety.  Our hearts ache.

We pray……we know God hears but for some reason He has chosen to tell us to wait.  If I was totally honest here I would say that I don’t agree with Him asking us to wait; but frankly He didn’t ask me!  I don’t understand……probably won’t until Heaven.  But, I cling to something my dear friend Karen told me back before Hannah was born.  She said…..”Tamara, we don’t understand why but if we knew what God knew….if we could see and know what He does…..we would chose the same path that He has chosen for us.  He knows the outcome.  He knows the reason and we would want the same outcome.  He just does not share that with us, but we have to trust Him through it all.”  I truly remember thinking when she shared that with me that it couldn’t ever get any worse than that moment.  Finding out I was pregnant with a child with special needs and 4 heart defects; being told that my baby wouldn’t survive birth.  There was nothing worse than that…..but, right now; especially these last 6 weeks it is worse!  So, once again I am clinging to what Karen told me.  I am holding on for dear life and I AM TRUSTING God that He will carry Dennis, Hannah and me through this and get us through to the other side.  I am trusting that there is a light at the end of the tunnel and that we will all be better, stronger, healthier and more faithful afterwards.  I am looking for the lesson in all of this.  I am looking to see what God is trying to teach me and I am grasping His hand and holding on for dear life.

This is HARD.  This is PAINFUL.  This is AGONIZING.  This is HEARTWRENCHING.  This is SAD.  This is SCARY.  BUT……I hold on…..I trust God…..I lean on His everlasting arms and I have HOPE!  Please pray for us.  In some ways this is easier for me than Dennis and in some ways he handles this better than I do.  Thankfully, so far, when I am weak; he is strong and when he is weak, I am strong.  I think God is gracious to allow it to be that way.  But, for a man…..he wants to just FIX it and he can’t; so in so many ways this affects him on a different level.  Yes, I deal with it more…..24/7 for me and so I am probably a little more weary and tired; but Dennis has to go to work each day, leaving me to deal with it and I know that tears him up inside.  He wants to be here to help; and for obvious reasons he can’t.  I am thankful he works so hard for us……he sacrifices so much for us and especially lately for me; he has really sacrificed and I am so grateful to him for that.  Please just pray for us……pray for change…..pray for that light at the end of the tunnel to come quickly……

I have learned through all of this that you cannot find your comfort in others.  No person can give you what you are looking for…..only God can.  I write for therapy.  I write asking for prayer.  I write to get my feelings out.  But, only God can fix this.  Only God can heal.  Only God can provide the comfort and strength that we need to get through.  When we walk through the valley, He alone, is our guide, our comforter, our strength and our peace.  If you are going through a valley as I know so many people are…..I encourage you to find what you need in Christ……no one can do that for you.

peace2

Until next time……….

Advertisements

Broken Hallelujah

There is a Christian song I love sung by The Afters called Broken Hallelujah.  It is my heart right now and I wanted to share the lyrics with you in case there is someone out there that is also singing with a broken hallelujah.  I am a firm believer that we still need to be thankful throughout our difficulties; but I will also be the first to admit that can be extremely hard!

Because we haven’t shared everything entirely with most people I am sure a lot of people are wondering all that is going on; but at this time we still have more questions than answers and in all honesty the answers we have received have broken our hearts.  The life we are living right this very minute with Hannah is worse than anything we could have imagined…..I would seriously rather go through 3 more open-heart surgeries than what we are dealing with right now.

Dennis and I are both at rock bottom, can barely stand and find it difficult to even pray.  We are struggling to find the words to lift to Heaven; but fortunately we serve a God that knows and can read our hearts.  He knows our petitions, our questions and our struggles and I do continuously offer Him my broken hallelujah because no matter how bad it seems, He has a plan.  A plan that I know nothing about; but He will be glorified through it all; that I can promise!

So, if you are struggling and have nothing left to give; I encourage you to go listen to this song.  Here are the words that speak so strongly to me right now.

 Broken Hallelujah

(Verse)
I can barely stand right now.
Everything is crashing down,
And I wonder where You are.

I try to find the words to pray.
I don’t always know what to say,
But You’re the one that can hear my heart.

Even though I don’t know what your plan is,
I know You’re making beauty from these ashes.

(Chorus)
I’ve seen joy and I’ve seen pain.
On my knees, I call Your name.
Here’s my broken hallelujah.

With nothing left to hold onto,
I raise these empty hands to You.
Here’s my broken hallelujah.

(Verse)
You know the things that have brought me here.
You know the story of every tear.
‘Cause You’ve been here from the very start.

Even though I don’t know what your plan is,
I know You’re making beauty from these ashes.

(Chorus)
I’ve seen joy and I’ve seen pain.
On my knees, I call Your name.
Here’s my broken hallelujah.

With nothing left to hold onto,
I raise these empty hands to You.
Here’s my broken hallelujah.

When all is taken away, don’t let my heart be changed.
Let me always sing Hallelujah
When I feel afraid, don’t let my hope be erased
Let me always sing Hallelujah.
Let me always sing Hallelujah.

I will always sing
I will always sing
Here’s my broken hallelujah.

Until next time………

Defeated

So this is what defeat feels like?!  I have never been one that cares if I win or lose.  I am probably the most non-competitive person in the world.  I can play a game and I will laugh if I lose because it truly doesn’t bother me.  I was not an athlete growing up and I could care less about sports.  I do cheer for the Georgia Bulldogs and Vanderbilt in football each year; but if either teams loses, I truly don’t care.  In fact, when they play each other, I cheer for both of them….so, competitive, I never have been……UNTIL NOW!

But this is not a game…..this is not a sport……this is REAL freakin’ life and I am, right now, defeated!  I cannot fix Hannah……I cannot fix our current situation……I cannot catch a break and neither can she.  I am fighting with everything I have.  I am researching and searching for answers.  I am loading my child up with medication after medication after medication and at this time, to no avail.

Struggling with defeat at the moment.  Struggling to make sense of this and struggling to accept this as our new normal; not even near embracing it yet.  In fact, if truth be told…..I will never be able to embrace this.  What we are dealing with right now is absolutely impossible to fathom……I would have never dreamed in a million years that we would be in the place we are at this very minute.  The answers we have received over the past 3-4 weeks have brought more questions; questions that I am not sure I want the answers to.  I don’t want this to be permanent.  I don’t want this to be our new normal!  I want my little girl back……I want the happy, social, well-adjusted little girl that we had prior to this last viral infection.  Yes, she runs fevers everyday and has a low immune system…..I can deal with that; that is nothing compared to what we are dealing with right now.  These new symptoms are so awful and have taken the little girl that I knew away from me…..she is not Hannah; and there is nothing I can do about it.  Defeated!

Dennis and I both feel defeated at this moment.  Dennis even admitted to someone the other day that he was struggling and the smile on his face was fake.  If you know my husband; that took alot for him to admit.  Dennis is the eternal optimist……never pessimistic; until now.  He will admit that he gets an “out” everyday and gets to go to work.  He then comes home to a child and a wife that he doesn’t know anymore.  Our home is a battle ground……we are all fighting to get our old normal back and it isn’t happening.  At night, after Hannah is asleep (which is a story in itself because one of her new medications gives her insomnia, so we had to add another medication to help her sleep); Dennis and I just sit, like zombies in front of the TV.  Half the time I cannot even tell you what we are watching and what has happened because I am so zoned out.  My brain shuts off at 7pm.  That is the only peace in our home right now…….and we hate it!

We ask why constantly, but we get no answers.  We know God loves us, we know He cares and we know He has a plan but right now we still feel…..Defeated!  We are hanging on tight to each other as we try to accept this new normal.  We have both cried more in the last month than I think we have in the previous 8 years.  Unfair doesn’t even begin to describe how we feel!  Hopeless, struggling, sad…..Defeated!

Then I saw this……..

defeated

Yes, we are defeated right now…..the feelings are real and the emotions are raw, but I speak for all 3 of us and WE WILL NOT GIVE UP!  I will be the first to admit that right now…..this very moment, this defeat is painful, horrible and real; but giving up is not and will never be an option! I may not be competitive when it comes to games and sports; but I am when it comes to my daughter!  We will fight and we will win!  I know God is not going to fail us now!

A sweet friend of mine sent me a few scriptures that really spoke to me today.  Thankful for friends that encourage me with God’s word…..His hope and His love.  Those sweet friends that continually show me His grace!

Isaiah 40:30-31

30 Even the youths shall faint and be weary,
And the young men shall utterly fall,
31 But those who wait on the Lord
Shall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary,
They shall walk and not faint.

Isaiah 61:3

3 To console those who mourn in Zion,
To give them beauty for ashes,
The oil of joy for mourning,
The garment of praise for the spirit of heaviness;
That they may be called trees of righteousness,
The planting of the Lord, that He may be glorified.”

Until next time………

 

 

Because of Easter

Easter2

I need to be honest here….I wasn’t going to do an Easter post; but I had to remind myself that it is because of Easter that I have HOPE.  It is because of Easter that I can weather any storm.  It is because of Easter that I won’t give up.  It is because of Easter that NO MATTER what life throws my way I will have hope, peace, grace, mercy and strength.  It is because of Easter that I find reason to believe that one day none of this life that we are living is going to matter because this world is NOT my home!

Easter

I made the mistake today of logging on to Facebook….BIG MISTAKE when you are walking in the valley!  Not that it is anyone’s fault as I am happy for friends and family that had the opportunity to enjoy today and celebrate what today means!  But, it did make me sad.  I looked at all the pictures of everyone dressed up in their Sunday best ready for church.  I saw pictures of kids hunting Easter eggs and the Easter baskets that really good mom’s did (I am a really bad mom as I didn’t do Hannah an Easter basket because I never got out of the house to get the things for it).  The Easter basket thing made me want to kick myself; but I really had no choice as Dennis worked nights last week and frankly getting out was not something I was really able to do until last night and that was for a late, quick dinner with friends from Atlanta and right back home.  But, as a mom…..well, I wanted to kick myself anyway.  So, yes…..today I was sad.

But, then God sent an angel our way in the form of my 2nd mom, Adrienne.  I claim Adrienne as my 2nd mom because frankly she has been through so much with me and there are things Adrienne knows about me that I am not even sure my husband does….LOL!  God laid it on Adrienne’s heart to bring us Easter dinner!  She brought all the Easter goodness…..ham, broccoli salad, limas, sweet potato casserole, squash casserole, deviled eggs (yuck, but Dennis and Hannah loved them), rolls, lemon cake and my favorite…..CHEESECAKE!  The best thing about this meal was she stayed and ate with us and didn’t rush off afterwards…..she stayed, talked to us, encouraged us, scolded me (ha), shared her wisdom, love, acceptance and support.  What a gift from God that she was and what a lift to both mine and Dennis’ spirits!  Adrienne KNOWS everything about us and the greatest gifts that God blessed her with is her non-judgemental spirit and her Godly wisdom.  Both of which I need in my life right now.  So, I am extremely grateful for what she did for us today.

After she left, it really got me thinking about today; what it means to me.  It isn’t about the Easter bunny (who I have always found to be creepy anyway).  It isn’t about the chocolate, although I like that part.  It isn’t about church, hunting eggs or being with family/friends.  It is about Jesus….the enormous sacrifice that He made on that Old Rugged Cross.  He suffered tremendously for me…..for you…..for anyone who will just believe.  He paid it all; the ultimate sacrifice; the ultimate gift of life everlasting.  My sins are forgiven because of the blood He shed, the excruciating pain He endured and the suffering He went through and DID NOT HAVE TO.  He did it because of His unconditional love for me…..his unconditional love for you and was willing to pay our debt in full.

Easter3

How could I not write a blog post today?  How could I not acknowledge my Savior?  How could I not show my love for Him and how grateful I am for what He did for me on Calvary?  Because of Easter we can have HOPE that one day…….there will be no more sickness, no more sorrow, no more pain, no more death, tears or suffering.  Heaven for eternity all because of one perfect man’s death on Calvary and Resurrection on Easter!  Thank you Lord for paying my debt in full so I don’t have to!

Easter1

Until next time…….

Can’t Win And A Little Grace And Understanding

Here is the thing…..I either blog and Facebook about what is going on in our life (yes, the ugly reality at times since I don’t just share the flowers and rainbows) and I get accused of being negative and complaining.  Then I take a break and I get accused of being depressed, secretive, isolating myself and Hannah and alienating people from our life.  I CANNOT WIN!  So, I am going to blog when I feel like I have something to say…..it may or may not be about Hannah as I am still wanting to protect her from putting EVERYTHING out there for the world to see; but sometimes my thoughts get the best of me and since this is the ONLY form of communication I have outside my four walls, I will blog when I see fit to.  With that said…..

Do you ever feel that no matter how hard you try there are just certain people who you will never please?  No matter what your circumstances are or what their circumstances are, there is just no winning!

My heart is broken right now because of a few things that happened during my blogging break.  All I have ever asked of people is just for them to show me a little bit of grace and understanding.  I don’t ask for help.  I don’t ask for anything.  I don’t inconvenience people in any way.  I rarely take people up on their offers; even though I am getting better at that, because I am realizing that they wouldn’t offer if they didn’t truly want to do something.  I don’t want to put anyone out or ask them to help me when I am sure there are many other things they would rather do.

All I have ever wanted from anyone; friends and family is a little bit of understanding with my situation.  I CANNOT get out of my house.  I have NO choice!  This is not what I would choose for Hannah or myself but it is the way it is right now.  The last 8 1/2 years has been a rollercoaster of sickness for Hannah.  She truly has been sick more than she has been well.  The funny thing is, I have gotten blamed for that, go figure!  The “Oh, you didn’t expose her to enough germs as a baby.  You didn’t breastfeed.  You didn’t take her to church.  You didn’t take her to the store….blah, blah, blah, blah.”  IT ISN’T MY FAULT!  There is NOTHING I could have done to prevent any of this.  ESPECIALLY with as bad as her heart was when she was born.  Sickness, RSV, pneumonia, bacterial/viral infections could have meant DEATH for her as a baby, so hell no….I didn’t expose her to germs if I could help it!

Grace, a word that is so beautiful to me.  It is a word that covers it all…..forgiveness, acceptance, empathy, sympathy, understanding, love, care, concern…..to name a few.  All I want is grace extended to me from people….friends, family, foes……it is all I want!  I don’t care if you agree or disagree with me.  I don’t care if you like or don’t like me.  I don’t care if you wish harm on me or blessings on me…..NONE of that matters!  I just want the same understanding and grace extended to me, as I try to do for everyone I come in contact with.

This journey with Hannah, as I have said before has taught me so much!  I learned how selfish I once was.  I learned how judgemental I once was.  I learned how materialistic I once was.  How unloving and uncaring I once was too.  But, that has all changed…..because of a little girl with Down Syndrome.  Because the Lord saw fit to give her to me to change me, and frankly, I don’t know anyone else who needed changing more than I did.  So…..I was blessed with Hannah.  But, it hasn’t been easy…..it has been the most difficult lessons I have ever learned with lots of heartache, tears and sadness.  But also, alot of joy because of ONE LITTLE GIRL named Hannah that completely changed my life!

All I want…..besides my little girl ALL well and whole is grace and understanding from those people that are on the outside looking in.  Those that truly don’t know all that this life entails, but stand on the peripheral looking in and judging.  Those that don’t ask questions but think they know the answers.  Those that truly think they know what they would do in my shoes and how I feel, but have never been where I am…..all I ask for is grace and understanding.   You don’t have to understand personally but you can understand that I am doing all I can with what I have and NOBODY in my shoes could do it any better.  I can say that because I know God is equipping me on a daily basis and I am doing what He has called me to do but it isn’t always fun, joyful, exciting or peaceful!  I just want grace shown to me……that is all I ask.

It is so easy to judge others when you haven’t walked in their shoes.  When your life is great, moving right along and blessings are being poured out abundantly on you; you think you know best about everything.  BUT, word of warning….be careful, because one day the shoe will be on the other foot.  You might be the one asking for grace and understanding and will have to eat your words!

I have absolutely NO fight left in me for anyone or anything that doesn’t live in my 4 walls.  I use all my energy and strength on a daily basis for my family……I am not going to argue about my situation and my “bad/poor decisions” with anyone…..I stand by ALL I have done for the last 8 1/2 years!  I guess the only other thing I can say at this point is if you can’t show grace and understanding please, please, please……take your leave and walk away from me.

Until next time………

More Answers Leads To More Questions and Blogging Break

This is probably going to be one of my shortest blog posts ever.  We have once again had a very difficult week which landed Hannah in the hospital for evaluations with several doctors.  I am so thankful for a Pediatrician that saw the need to have us admitted and fought for us knowing that Hannah was in trouble, was sick and needed help.

I have learned a lot about Hannah and her illness this week and because of that God has impressed upon Dennis and I both to protect her, protect us and our privacy at this time.  There is a lot I could say about the answers we have received this week but I am not going to.  The more answers we received also included more difficult and yet unanswered questions.  We are choosing right now to keep things to ourselves and protect Hannah from being too exposed and to protect us from more hurt.

Unfortunately, there are people in this world that RELISH in others heartbreak and difficulties.  There are people who don’t care and will talk behind your back and the last thing that I would ever want to do is provide information and fuel to those that mean us harm.  As thankful as we are for our prayer warriors and those that truly have our best interests at heart I need to be ever mindful of what is in Hannah’s best interest.  Let me suffice it to say that Hannah is very sick and has issues that most would never understand.  We have more testing ahead in the next week or so and are being monitored and watched closely by Neurology and a few other Health Care Specialists.  We are indeed thankful for a group of doctors, especially our Pediatrician, that has walked this entire journey with us and are all working together to provide Hannah the best care and find out all the answers and treatment plans that we are so desperately needing.

Because of this past week, I know I need to focus ALL of my attention on Hannah.  Facebook and this blog are two of my biggest distractions and I cannot allow them to distract me right now.  Hannah needs my undivided attention now and in the days ahead.  I have learned so much this week and Facebook and my blog are “my things” and things I invested in that helped me socialize and vent; but right now I cannot focus on my needs and the things that distract me from giving my all to Hannah.  Because of this, I will be taking a blogging break.  I am not saying goodbye to my blog as it is something I enjoy; but I am taking a break.  It may be for a month, 2 months or longer, I don’t know at this point.  All I do know right now is that the Lord really convicted me this week of taking a time out and focusing my all on Hannah; as she needs me now more than ever!

I will check Facebook a few times each week after Hannah is in bed as it truly is my ONLY source of socialization that I have right now, so I won’t be completely out of the loop…..but, other than that I will be totally focusing on Hannah, Dennis and Henny.   I hope to one day be back to blogging as I know I will miss it greatly.

Here is a picture to leave you with……she truly has my heart and right now my heart is hurting so badly for her!

100_4147

Until next time…………

The Frayed End Of The Rope But The Anchor Holds

You know that saying….”I’m at the end of my rope.”  Well, I am at the end of mine and it is FRAYED!  Some days are better than others……some days you know it will all be okay and you can actually get through the day with a smile on your face.  Then, there are other days…. you are not sure you can take one more breath!  Today is one of those I don’t know if I can take one more breath days.

Have you been there?  I am sure if we were all honest, the answer would be yes.  We all have those days that we wish we never had gotten out of bed and you live for it to be over!  I was SO over this day by 8am.

I try to be completely open and honest in my blog; but there are some things that I cannot share.  I want to be respectful of Hannah’s privacy and mine and Dennis’ as well.  There are things with Hannah that I don’t feel the freedom to put out there for the world-wide web to see or know.  Right now, it is some of those things that have me at the end of my very frayed rope.  Hannah has emotions, she shows love but she can also show anger…….she shows joy and she shows disappointment.  As much as people like to think that kids with Down Syndrome are always “happy and loving,” the truth is…..THEY.ARE.NOT!  For the most part, Hannah is happy and loving; maybe even more so than the “typically-developed child,” especially for ALL that she has been through.  BUT, let me be the first to abolish the “always happy and loving” Down Syndrome trait!  I know I can speak for every mom that has a child with Down Syndrome…..that always happy/loving thing is ABSOLUTE RUBBISH!  RUBBISH, I tell you!  Today has been a fight…..fighting to find joy……fighting to find answers……fighting to be whole……fighting to break out of this prison…….fighting to do and be anything we aren’t right now.  JUST FIGHTING……Hannah is fighting and I am fighting and our home is anything but peaceful right now.

I called a dear friend this morning…..not only has she become a mentor to me but she knows Hannah, loves Hannah and understands Hannah in ways that I can’t.  Thank the Lord for a friend that deals with kids like Hannah for a living!  Talking to her helped.  She gives me perspective and she reminded me that I know what I have to do.  She reminded me about what I write in my blogs (yes, using my own words against me, HA) and she told me to give it back to the Lord.  Her exact words…..”give Hannah her iPad and fall on your knees and face before God.”  Then, she prayed with me…..as I cried, she prayed and I felt peace.  I don’t want to “preach” what I believe and not live it.  I want to live what I believe even when the storm is raging; even when the ship is battered; even when the sails are torn and even when I cannot breathe.

The song, The Anchor Holds came to mind…..maybe these words will encourage someone else who might be at the end of their very frayed roped today too……

I have journeyed
Through the long, dark night
Out on the open sea

By faith alone
Sight unknown
And yet His eyes were watching me

The anchor holds
Though the ship is battered
The anchor holds
Though the sails are torn

I have fallen on my knees
As I faced the raging seas
The anchor holds
In spite of the storm

I’ve had visions
I’ve had dreams
I’ve even held them in my hand

But I never knew
They would slip right through
Like they were only grains of sand

The anchor holds
Though the ship is battered
The anchor holds
Though the sails are torn

I have fallen on my knees
As I faced the raging seas
The anchor holds
In spite of the storm

I have been young
But I am older now
And there has been beauty
These eyes have seen

But it was in the night
Through the storms of my life
Oh, that’s where God proved
His love to me

The anchor holds
Though the ship’s been battered
The anchor holds
Though the sails are torn

I have fallen on my knees
As I faced the raging seas
The anchor holds
In spite of the storm

I have fallen on my knees
As I faced the raging seas
The anchor holds
In spite of the storm

Songwriters
CHEWNING, LAWRENCE / BOLTZ, RAY

Published by
Lyrics © Warner/Chappell Music, Inc

Until next time……….