Luv'N Lambert Life

A blog about living with Epilepsy, IBHS, Homeschooling and so much more

thankful

Our Life With Epilepsy {Epilepsy Awareness}

by

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.

Prayer {Thoughts From Me}

by

I’ll be the first to admit that I’m not the greatest at Praying.  You will never see me set into writing a prayer for you, me or anyone else.  You will never hear me speak a prayer past a pre-written speech taught to millions daily for this very purpose.

It’s not that I don’t know HOW to pray, or what to say when I’m talking to God.  We – God and I – have a great relationship.  I talk to him just like I would my Father.  To be honest, He’s the only REAL father I’ve ever had.  We often have indepth, life changing conversations with one another, just like I would with a real live Dad.

I tell him things, like how I wish my dear friend’s child wasn’t sick or how I hope he finds a permanent home for my sweet friend soon.  How I hope Laycie doesn’t wake up and have a seizure tomorrow and I’m thankful Emmalee no longer has them.  Sometimes He reassures me, sometimes I hear him “speak” telling me all will be ok.  Other times there is silence, just peaceful tranquility that only God Himself brings.

I can’t put these things into a melodical prayer.  I can’t write them into pretty words and sentences, like some do.  But I can talk, just simply TALK to God and let him know what I’m thinking, feeling, wishing for others that I care about, who have touched my soul. 

This is simple chat with my Father is how I pray.  How do you pray?

Naptime {Epilepsy Awareness}

by

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.

Thankful For Much In Life {Thoughts From Me}

by

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.

Migraine Day and Special Needs Effects {Epilepsy Awareness}

by

I woke up with a mild migraine this morning and knew I would have to return to the bed.  I hate days like this.  Migraines are the unfortunate side effect of having had Epilepsy as a child (for me and for my oldest daughter).  It’s often hard to tell if a migraine, for me, is caused because of an imbalance (brain) or because of my sinuses, since both both me at times.  I believe this one was from an imbalance due to stress.

The last month as been an extremely busy one, filled with ups and downs, going here and there, and barely any time for rest.  This weekend was the last busy one for a month and didn’t allow for a lot of rest, though there was a tremendous amount of fun for all involved.  I’m thrilled to have been a part of it and I’m just as thrilled for it to be over with. 

Dealing with a migraine is never fun.  Waking with one this morning, I knew I would spend most of my day in bed and I certainly have.  After napping to rid myself of the main effects of this major headache, then checking on my sweet children, I have gotten caught up with my world online.  There wasn’t much else to do while waiting for my head to completely ease off.

I find that taking my allergy meds, which I do daily, taking an Aleve, drinking a Pepsi and eating a Hershey’s chocolate bar, my headache will sometimes disappear, especially if I do all of this early in the process.  Today it’s certainly worked for me, though I know from previous experience that it can return at any time.  A good nights sleep is what’s needed to really keep this mild migraine from returning and turning into a Super-Sized-Sick-All-Around Migraine.

As I think about all my girls will go through with their Epilepsy and it’s atrocious after-effects, I feel sad and a little guilty that I have passed this on to them.  It breaks a Momma’s heart to know her children have something like this hidden illness that causes them to not be completely perfect health wise.  It breaks my heart to know all of the pain they have endured and will endure because of this disorder throughout their lifetime.  One never knows the effects Epilepsy will have on their life.  Until you become a parent with a child who has a disorder like this one, it’s hard to understand HOW much it truly does effect a child’s and a parent’s life. 

Growing up, I knew the effects of Epilepsy as a person living with it.  I, thankfully, don’t remember my convulsive seizures but I do remember the tests, the weirdness I sometimes felt when I had an Epileptic episode that was non-convulsive, and the sadness I felt when a teacher would yell at me because I wasn’t “listening”.  (No I wasn’t listening because I was seizing and you didn’t know it.)  The impact of this disorder on my own life caused me to relearn everything I could for my children when it became their turn to suffer through this.  It also impacted my decision to homeschool my children so that they wouldn’t have to deal with an imperfected educational system set up for millions of children who are considered normal. 

I’m thankful that the effects of our busy season, the Holidays and Birthdays, has had mild effects on all my children.   I’m thankful that it’s me sitting here with this mild migraine instead of the girls.  I’m thankful to know what they go through and know how to handle it, for the knowledge God himself has bestowed upon me. 

Recently, I had a friend tell me I home school because I’m afraid to let go of my children, that I do it for myself.  Maybe, partially, I do.  I know how easy it is for God to take a child home to Him.  I want to enjoy every selfish and selfless moment I have been given with these three beautiful children by Him.  I am afraid to lose my girls to this disorder, to let them go into an imperfect institution that is not prepared to handle their seizing IF it was to happen.  I cannot live with that maybe, that IF.  I would never forgive myself if something were to happen that could have been easily prevented at home, under guidance of someone who knew how to handle the effects of their disorder.

It’s easy for anyone to look at my children and say “oh they look normal”, or “there’s nothing wrong with them”.  Looks can be so deceiving and yes my children’s respective disorders could be much worse than they are.  I’m thankful everyday that they aren’t, that I am able by God’s hands to be able to deal with each of their individual special needs.  The life of a Mom with special needs children is exhausting and it never ends.  There will be no end for my girls with this disorder, even if it goes into remission.  Like Cancer, Epilepsy can always return, unexpectedly at any time.  Until the day I die, I will be on my knees praying it goes away and does not return but even this is not a promise it won’t.  However, when it comes up, when they have bad days, and good ones, I’ll be there beside them battling away the demons and receiving the love and hugs and happy smiles that come.

For those wondering, my son does not have Epilepsy but he does have ADHD, as does my step-son, which is a disorder very similar to Epilepsy but instead of resulting in seizures that shut their bodies down, as Epilepsy does, ADHD results in hyperactivity and impulsiveness that is caused by over activity in the imbalances of the brain.  My son is not medicated for his disorder but my step-son is.  My son does not attend Public School because of his disorder and also his sisters disorders, while my step-son does attend, by his families choice. 

Both these disorders, Epilepsy and ADHD, treatments are very similar and can sometimes (not always) be controlled without medication by adjusting your child’s schedule, sleep patterns, and home environment as my son and oldest daughters are controlled.  My youngest requires all of the above and also medication to control her seizures at this time but as time goes on I hope to be able to remove the medication and control her episodes through the same balance and structure provided for her older siblings.  Only time can tell what will happen with this.

When my oldest was going through the days and months of her first seizure, my brother told me the wisest piece of advice I know.  He said, “We dealt with this with you and made it through and we will deal with it and make it through hers too”.  Funny that as time has gone on, due to his own life, we are no longer close, meaning he is no longer dealing with it (or my sister either for that matter, both because of their own choices in life) but his words have always stuck with me and they are definitely true.  I have made it this far, they have made it this far and I will keep fighting with and for them for all the things they each need to over-come their each of their special needs.

They have changed my life for the best and I would never have it any other way.  I’m thankful for the gifts they are in my life.  And if you’ve made it this far, thanks for reading my blah blah blah blog.

Have a blessed day!