blessed

The Darkness That Lurks {Epilepsy Awareness}

June 18, 2013 by Dana

How do you do it?

How do you tell your baby, one of the prettiest, sweetest girls you know, the child whose older sister proclaimed as our angel the day she was born, that she won’t die? How do you even deal when those words come from the mouth of your beautiful 5 year old daughter?

My Momma heart breaks for her. My Momma heart wants to scoop her up and hold her tight and keep her safe forever.

I want to SCREAM. I want to SCREAM to God, “WHY?! Why my daughter? Why my precious baby? Why does she have to suffer with this? Why does anyone suffer?”

I can’t reassure her that she will wake up from the next seizure. I can’t reassure her that there won’t be another one. I can only tell her about Heaven and all the great things that await her there. Even when I don’t want to because I pray deeply and hard that she will not know for a long, long time.

“Momma, who turned out the lights?”, she asked me. “Was it you?” “No, baby.” “Was it Daddy? Why would Daddy cut the lights out on me?” “Daddy didn’t, angel.” “Oh, Grandma did it then!”

All this past week she has been terrified of the dark. It didn’t take me long to figure out what she meant. Her whole little safe world went dark last Tuesday morning. She couldn’t see for almost an hour. Her eyes dilated so much that she wasn’t able to see anything but a black abyss.

And it hits me: just how terrified she was. That this seizure affected her sight so badly. That the next one could honestly leave her blinded for good. That I’m thankful this seizure didn’t leave her blinded for life.

It hits me that she could have died last Tuesday. That she stopped breathing on me. That there was nothing I could do and no amount of CPR could stop her brain from overloading and her body from seizing. It had completely taken control.

All I could do was watch and pray. All I can do now is wait and pray. I do daily and she has prayed too, wholeheartedly. We all have.

Tomorrow morning, or rather in a few short hours this morning, at 7:30 am, it will be one week from her worst Grand Mal since she was 4 1/2 months old. One week has passed. Multiple conversations to make her forget and feel more at ease have happened.

Every day we have the same talk. “Momma, it was dark.” “I”m so sorry, Laycie.” “But you didn’t turn out the lights on me?” “No, baby.” “You will keep on a lamp for me.” “Always, if it makes you feel better.”

And I do. She sleeps in the bed with us for now, until we know this monster called Epilepsy is controlled again. I leave the light on for her and for me. It helps me see if she’s breathing. It helps me see if she’s a little too still. And it puts her little mind to ease.

I don’t know what the future holds. I don’t know how to calm her fears other than talk with her, listen to her, be with her, every waking and sleeping minute. And pray, for her and with her every time she needs to do that and even when she isn’t even aware I am.

I’m thankful that God has blessed us with more time. I’m well aware of the Mothers that weren’t given that chance. My heart aches for them and for all the Momma’s who must watch their babies suffer so much.

For now she sleeps, though it’s still very much restless and we wait patiently to see if this monster is lurking or controlled for now. Only time will tell.

Happy Birthday Princess 2012 {Photo Reflection}

February 17, 2012 by Dana

Another week of chaos is leading into a weekend of the same for our household. In just a few hours my sweet Princessa Emmalee is turning 9. I can hardly believe she is already 9. She was just a short, sweet, curly haired baby toddling around my yard.

She’s amazing, my little girl. She does everything with such an amazing strength. She has a love for Jesus that I envy. Though she struggles more daily with the worldly, there is always a kindness inside her that shines through. I know that stems from her strong Christian roots that I have tried to instill in her from birth.

Emma is my artist. She lives for art. Craves it. Looks for the artistic aspects in all of her life. She will throw down anything, whatever she is doing to create a masterpiece. And what a masterpiece this little girl is, straight from Heaven sent down to me. I could never be thankful enough for the blessing that this sweet girl is to my life.

She keeps me on my toes. She makes me thrilled and angry all at once, feeling Life through her own determined stubborness. And stubborn she is, but it is her way, born to her just as the Art is. Someday her bold and strong attitude will take her far places that I can only imagine as she is growing.

So on this day of February 17, 2012, I tell my Princessa Happy Birthday and wish her as many blessings as her life has given to me. I wish her all her dreams come true with God’s loving guidance showing her the way. I could not be more excited for her to turn 9, as I know she is just as excited today.

Our Life With Epilepsy {Epilepsy Awareness}

June 17, 2011 by Dana

This past week has found many instances for me to share our struggles with Epilepsy. Normally, I find that I don’t go out of my way to share with others about our life with this disorder, but neither do I keep it hidden when asked or I think it will help someone. Just to be honest, the memories and talk have exhausted me this week.

This week has reminded me just how serious this disorder is. It has reminded me to be thankful that my daughters Epilepsy is indeed in control. I am reminded to be on my KNEES thankful to my God in Heaven that my daughters do not suffer more with this.

I can sit here and describe the terrors of this disorder all day long but you simply cannot understand unless you have lived similar. There is NOTHING like watching your child lay limp, wondering if they are hurting, if this seizure will stop, if they will have brain damage or worse, death will occur.

Yes, that’s the truth of it. My daughters could DIE from their disorder, from the severity of seizures. My daughters could suffer life changing results, end up basically as vegetables if not dead, from a something that seems so simple but isn’t. Our lives could change forever with one single seizure.

I suffer from this too. Yet I never worry about me. I wish my daughters to be done with this disorder. For it NOT to “bless” our family as it does. For it to be destroyed with us, so that their own children don’t have to live as we have lived, with something that we are limitedly able to control. I pray for a cure, though I know for us there will most likely never be one.

I would love for one of the wonderful natural diets to work for us. I would love to be able to detox my child and give her back her life. I would LOVE to be able to give them some natural medication that will simply take this disorder away. But I also know the dangers of attempting such things without my child’s doctor working with us to do it. I know there could be the most serious of results if I attempt these things and they go wrong.

Our best option is following the orders of our trained neurologist, who always listens to my thoughts on natural treatment, though she often looks at me like I’m crazy when I tell her we will not medicate for ADHD. Still she, too, looks for every option best for my girls and provides needed answers as we go along this journey. I am thankful that God has blessed her with this knowledge to be able to somewhat help my daughters.

I am thankful our Epilepsy is not worse, that there are days when we can completely forget it, when my daughters can live like they are “normal”. Don’t get me wrong, it’s always there in the back of my mind but this disorder is “normal” for me, as I’ve lived with it all my life. It will be “normal” for my children as it’s always been a part of their lives.

And daily, I find myself THANKFUL TO GOD for allowing us to be able to control our Epilepsy, for the things we have learned by having this throughout generations of our family that others aren’t as lucky to have for reference, for the ability to LIVE “normal” lives, even with Epilepsy. But mostly I am thankful that my girls do not suffer in pain from their seizures, that the medication works for them, that limiting triggers and control environmental variables helps them. I am THANKFUL to be blessed with two beautiful girls and my sweet boys, to be able to live, love and laugh with them daily and I pray to be able to do this always.

Naptime {Epilepsy Awareness}

May 23, 2011 by Dana

Today naptime for my little Three Frog was in my bed. Somedays she likes to burrow her sweet blonde head deep into her Daddy’s pillow, snuggle into his blanket and snooze. Today she is doing all of these, with 5 blankets covering her tiny body. She loves her soft blankets.

As I watch her sleeping, I realize just how tiny and fragile she is. Such a precious gift from God. Each time she shakes and twitches, my heart fears the unknown.

It’s been 9 months since her last seizure. Her last checkup went well. We raised her medicine dosage to be sure no breakthroughs would occur. They haven’t. But we never know.

Each twitch reminds me of that. Each jerking of her tiny, fragile, precious body reminds me of this disorder that haunts our life, our family.

I pray.

I pray for the convulsions to be past. I pray for the Epilepsy to simply disappear. I pray for the days of medicating to control seizures to be over with. I pray for a cure for all those who suffer as she does.

My heart tells me not to worry, that all will be well with us. My human mind doubts, and worries, and wonders will it ever end? And if not, what then?

We continue through our days: medicating, praying, loving, snuggling, homeschooling, whatever it takes to make it through to the next one. Hoping everyday for the same results as I have had, as her sister has had, that all symptoms will just dissappear into something manageable, something liveable.

Only time will tell if we will get this wish. Only God Himself knows if it will truly end. A mustard seed of Faith is all I need to get us through but thankfully I have an abundance of Trust and Faith in God’s Great Work that someday this will all be over for her and she will no longer suffer from a disorder she cannot control.

Easter Weekend 2011

April 26, 2011 by Dana

We had a great Easter weekend.

My weekend started on Thursday night when the best friend stopped by to spend the night and have me help her with her hair. So we stayed up all night (until 5am Friday morning) taking her braids out and combing out her hair, while we watched tons of great movies on Netflix. It was a fun girls night though it was a lot of work.

Friday, we went to town like normal. We had chinese for dinner and brought it home to watch movies, bake cakes and wait for my Mom to get here. She arrived around midnight and I spent the night talking with her until 4am. It was great to see her and the kids loved knowing she was back home for now.

Saturday we had our Easter gathering with family. The traditional dinner and egg hunt. It went well and all the kids had a great time. I think the Easter visit is their favorite of all the dinners throughout the year.

Sunday we hung out at home and rested. The bunny brought the kids each a little something: a sand pail, bubbles, coloring books, a toy, crayons and candy. They really loved their simple gifts. Late in the afternoon we went to visit family friends. The kids were able to hold the sweetest puppy. They really loved that. Afterwards we went to Walmart just to look around and bought some extra holiday candy, as well as some movies and various other goodies.

Overall, it was a very relaxing weekend for us. We focused on family more than anything. Simply being together. I honestly feel that was just what we needed to feel refreshed for the month ahead.

Hope you all had a Happy Easter too!

Thankful For Much In Life {Thoughts From Me}

April 21, 2011 by Dana

Thankful for:

Small smiles in the morning.
Sweet kisses on the top of a brown haired head.
Sweet tiny kisses square on the lips.
Smelly dogs who love you know matter what.
Victoria’s Secret body sprays.
Flowers in bloom.
Singing voices rejoicing with made up songs from the heart.
Freedom.
Unexpected visits.
Challenging the norm.
Boys who love Lego’s.
Girls who love to cook.
Baby dolls and Barbie dolls and match box cars.
Grass underneath my bare toes.
Turtles in the pond.
Squirells in the trees.
That perfect shade of lipstick and nailpolish.
Long flowing skirts and comfy jogging pants.
Snuggling beneath the covers pretending to be “cold”.
Movies that run late.
Lemonade Mouth on DVR.
Easter Eggs.
The Resurrection.
A long talk with God.
Peace in my heart.
Bottles of wasted shampoo as a little girl learns to wash her own hair.
Smiles from knowing they helped and did a good job.
Knocks on my door, followed by “Good Morning Momma”.
“I love you, Mommy”
“Mommy, Mommy, Mommeeeee” a hundred times a day.
Music in my heart.
Love.
Warm sun shining down and cool rain wetting my skin.
Happiness.
The color Pink (and Blue, Red, Purple, Yellow, Green).
Abstract drawings done by little hands.
Coloring out of the lines.
Lines scribbled over pages.
Books with worn bindings.
Bibles with Jesus on the cover.
Good food.
Pepsi.
Sweet Iced Tea.
Pecan Pie.
Faces covered with chocolate and hands to match.
Bubbles blown into the wind.
Holding little bodies close as we rock for hours.
Sweet babies sleeping safely in their beds.

These are only a few of the many things I am thankful for everyday.