Words...

... just words

... but, words from the heart

... my words

... from my heart

... about life

... my life.

I haven't written for quite some time...

If I were to be honest... I would tell you that it is because I have not allowed myself to visit that very vulnerable place in my heart. For if it is not visited... then maybe... just maybe... what might be there... really isn't all that real. And maybe... just maybe... when I do go there... it will all be gone.

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You know... that reality of feeling absolutely depleted by life... my life. Exhausted to my very core... physically- mentally- emotionally- and yes, for some more honesty... even at times spiritually! For I cannot allow myself to go there. I am a wife... a mom... a daughter... a friend. I have to stay on top of the game... in control... and there for all of those special people in my life. But, in that certain place in my heart... the reality is... I feel very "out of control"... my life feels as if it is spinning round and round... without some sort of power to slow it down and put it all back into balance. To make "the bad stuff" all go away... and find that happy, secure place once again. Not just for me... but, everyone in my life. My husband... my children... my parents... my friends. Oh, of course, I go to that place in my heart each and every day... but, I don't stay long... I can't. I have to keep it together. And, I certainly don't write it down or even think of sharing it... because that just might make it real. Too real.

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But this week... it came crashing through. The real in my reality. Was it because my precious daughter had surgery... and it took my heart to that vulnerable place that cannot be denied? Is it because 17 years ago this week I lost my sister... my best friend? I don't know... but, I am there.

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...and it hurts. Really bad.

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Life has been difficult... really hard... more than tough. Most days... it has brought me to tears... down right sobs. It has dropped me to my knees... left me begging, pleading, and bargaining with God. At times I feel paralyzed... almost numb... as if my heart has been shattered into tiny pieces and is not capable of beating. Auto pilot. There are days I wish I could crawl into bed, cover my head, and sleep... and sleep some more until it has all faded away like a bad dream. And yet at times, I find myself going... going... going... maybe in the hope I can out run it... and find that it is all behind me.

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One hurdle after another... doctors... insurance... fighting for what is right... what is fair... for what we believe. Trials... oh yes, plenty. Searching for direction... guidance... that comfort and peace... praying we are on the right path and making the perfect decisions. But left feeling empty... confused... scared... and out of options. Having our sails filled with wind once again... in the hope of a new doctor... answers... and treatment. And yet... the tape rewinds... and plays again. Repeat. "Yes... we know our son has Epilepsy!" ... "Yes, we have accepted the fact that our son has Epilepsy!" ... "And yes, we realize 60% of your patients suffer from Epilepsy!" ... "Oh and yes, please know we are beyond thankful that our son can walk and talk!" ... "But, please know this... 'Logan Robert Tweedy' is not just a name on this chart! He is our son... our precious son! And excuse me for the fact that we cannot accept that medications aren't working and that he continues to have seizures! We will continue to fight... and never give up... until we can find one that does! If you can't help him... then pardon us for asking that we see someone else!"

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Our lil' Logan... oh, how we love him. How our hearts ache for him. The doctors, the appointments, the tests, and medications and those darn side effects that come with it all. The therapy... in which our lil' guy completely understands that "bumpy speech" and "turtle talk".... isn't something everyone has to practice. The questions he asks... the answers we give... so utterly tenderly... trying to balance honesty... without breaking his spirit. Begging me not to take him to the doctors again... or one more therapy appointment. And, wanting so badly with everything that I have in me to give in to those pleas... but, knowing I can't. The seizures... constantly leaving us living "on edge"... wondering when the next one will strike... how long will it last... will it stop on its own? Will I be there when it happens... will I be able to catch him from falling and hitting his head? Will he be okay when it stops? If I allow myself to go to sleep... will he be okay in the morning? And the jerking, the twitching, the shaking... and oh, those lil' eyes... it is heart wrenching! Does he know I am by his side... can he feel my love? And my poor lil' guy... what is he feeling? Even now as I sit here and type this... I can't allow myself to remember those times for very long... because quite honestly... I just might break.

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And... no, I am sorry... I don't want to put a pretty lil' smile on my face for you today and pretend that everything is okay... because it isn't. And yes, I realize it could all be worse. I get that... trust me! And no, he doesn't have cancer... and no, he isn't dying. And yes, of course, we are so very thankful for that. But in my life... it isn't "just Epilepsy". It is Epilepsy - period. And my lil' guy is suffering from it! And so to this Mommy... it doesn't matter what it is... it is hurting my son and that breaks my heart! And no... people don't die from Epilepsy per say... but, many people lose their lives because of the aftermath of Epilepsy. That is something that is very difficult to accept... and live with each and every day. And yes, please understand I realize life is short... and any one of us could go at any second... but, Epilepsy just adds to that. People share... "it's all gonna be okay... I just know it." Well you see... I heard that over and over... and over again... as my sister lay motionless in a hospital bed. For seven days I heard. Heck, I even believed it myself. Everyone was absolutely positive that she was going to wake from her coma and all would be well. We are good people... God certainly wouldn't take her from us! Well, on November 23rd, 1994... I "grew up" as a Christian. I lost my sister. And from that day forward... I see life very differently. God isn't going to make everything "okay". As Christians we will be faced with trials... and just because you believe... doesn't mean the Lord will tie up the ending in a pretty package... with a perfect bow tied on top.

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Life.

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No, it doesn't just effect me... it effects all four of us in this house. And, as a wife and mommy... how do I accept that? How to help my husband and my children... when anymore... I don't even know how to help myself.

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Our precious lil' Lorielle. She has seen so much and she is just 8 years old. Still very much "a baby". No doubt, she "knows" and "understands" and lives with the very same fears that her parents do. I don't know how to shield her from it all. Unfortunately, I can't and that is oh, so difficult to for a mommy to accept. Isn't that my job? Watching her brother suffer... hurt... no doubt, shatters that lil' heart of hers. I see her "acting out"... filled with "attitude"... because I am sure she doesn't know how else to process this. There are days when she needs to escape... a reprieve... and so she heads over to Grandma's house. Of course, I am so thankful she has some place to go... but, it is my job to be there for her... make her feel better... ease her fears... and some days... that just isn't possible. There are days when she becomes a "grown up" in the house... no longer a sister... but, trying so very hard to be a mommy to him because she so desperately wants to help me. Oh, that hurts. Lorielle knows a seizure could hit at anytime! That electrical storm in his lil' brain doesn't come with a forecast. And the fear in her voice as she asks if it is time to call 911 yet? It takes days for me to "recover" after watching Logan have a seizure... what can it be doing to my little girl? It is changing her happy little joyful hurt. That makes me angry... and sad... and just crushes my heart. I love her so very much... and I just want this all to stop.

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And then there is my loving husband. Who deals with all of this in his own way on his own time. Sometimes I will admit... I don't always get "his ways"... but, I know it his only way to cope. Days when he refuses to speak about any of it. Days when I see him cry. Days when he is so angry at God. And yet days when I wake up to find his Bible next to him as he sleeps. My husband hurting... and there isn't anything I can do.

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Life. Our life.

Why? Why us?

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We've been through so much already... really! Losing my sister at the hands of a man that was supposed to love and cherish her all of her life? Wasn't that enough Lord? Shortly after, having my mom diagnosed with breast cancer and scared to death I may lose her too? Okay, that was certainly enough! Wanting to become a Mommy since the very day I can remember... and then finally meeting the man of my dreams... to be plagued with infertility? Really? That still wasn't enough? Years of struggles with Bob's daughter... to the point our marriage almost ended in divorce? Okay Lord... way too much! Bob's family turning their backs on us... our children... longing so deeply to be a part of a family - with Aunts, Uncles, Cousins... and absolutely nothing. Why Lord? And yet... we now face the reality of living with Epilepsy. Lord, please... please help us. Help us again.

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Our life.

Why? Why us? ... ... ... Why not us?

The LORD is my Shepherd, I shall not want. He makes me lie down in green pastures; He leads me besides quiet waters. He restores my soul; He guides me in the paths of righteousness for His name's sake. Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff, they comfort me. You prepare a table before me in the presence of my enemies; You have anointed my head with oil; My cup overflows. Surely goodness and loving kindness will follow me all the days of my life; And I will dwell in the house of the LORD forever. Psalm 23