Thursday, December 5, 2013

Do' and Dont's

It is always hard as a parent when your child is diagnosed with something difficult.  We want their world to remain innocent for as long as possible.  We don't want them to ponder their death, we want them to enjoy life with that limitless possibility outlook.

So when we are cruising along in life and we hear that there is something significantly bad going on in the health of our children it is like a punch to the gut or a glass of freezing cold ice water dumped on your head during a really good dream.  So it is no wonder we don't always handle it the best.  Now that I am a couple of years out from hearing my daughter is epileptic I realize I should have read a do and don't list so I wouldn't have to undo damage.

So here is my list of do's and dont's when you hear your child has epilepsy:


Tell them what is going on.  This is one I did do right, but I was shocked at how many people asked me if Alina knew she was having seizures.  To clarify Alina does not have Grand Mal seizures, she has Absence seizures.  So it would be harder for her to know, but we felt knowledge was power in this case.  At least this way she had an explanation as to why people warped across the room or she missed part of the lesson in school.


Blame Yourself!! This is an important one.  There's always the "what did I eat while I was pregnant syndrome", but this goes beyond that.  I felt so guilty at all the times I had yelled at my daughter because she wasn't responding to me.  I thought she was just blowing me off. Her teacher is the one who picked up on something being very wrong, but neither of us once thought seizures.  I replayed the video's of my own bad behavior incessantly.  Realistically, though I tend to be a know-it-all, I really don't.  I had no experience and therefore no way to know that there was even such a type of seizure.  We were told by several medical professionals that she was lucky her teacher and I had a good working relationship.  Many of these kids go years with no diagnosis, are labeled the goof off and by the time the truth is discovered they are so far behind it is insurmountable.  So I had to realize it wasn't my fault she had the seizures but it was my fault we found it out and that was a good thing.


Reassure, Reassure, Reassure!!!   Oh my, I think my problem here was that I needed reassuring too.  I did not do enough of this.  I left her dangling while I whined and researched.  I think it might even be said I felt sorry for myself and here she was needing to know it was going to be ok.  The thing was she never outwardly stated she needed to know it would be ok.  Izabella would have.  Alina is an internal processor so she let it eat at her.  And boy did it eat.  So, you may not know that it's going to be ok, but they need to know that it will be.  I'm not saying you should lie, but remember the day before they were skipping through life only vaguely aware there was bad stuff out there.  There world and the world of your other children just crashed down as they process the realization that even kids have bad things happen to them.  I mean come on how many 20 year olds have that concept down?  So let them know it will be ok, because no matter what it will.  I believe in Jesus and His promises and if that is true then we know it will all be okay by any definition.


Make their entire identity about their "disease."  Your child does not want to be introduced as Alina the epileptic.  I never told Alina's friends, she did that.  However, she then took that on as her identity.  What that did was make her feel different and isolated.  I remember her crying that none of her friends had to take medicine and she was so alone. I pointed out that I take medicine, and her brother does.  I also pointed out that she really didn't know if other kids took medicine or not, maybe they just didn't talk about it.  Then this summer I stumbled upon a book called Becky the Brave by Laurie Lears.  I found it randomly at the library.  It is a story about a little girl with epilepsy whose little sister thought she was the bravest girl.  But Becky was embarrassed by her seizures. That is until her younger sister reminds Becky and her friends that seizures is just one part of Becky, there are lots of other great things about Becky that have nothing to do with epilepsy.  This book spoke to Alina and she finally realized that it is just one part of her, it isn't her whole story.

I am sure there are more to add to this list, but I will end with Do always love your children and they will flourish!!

The simple Gift

As we near the Holiday where we celebrate Jesus' birth by getting ourselves stuff, I have read multiple articles on simplifying this and making it less about stuff and more about the reason we celebrate in the first place.

I have often wondered why we as a culture do so much in buying, but that hasn't stopped me from participating.  I think for my  family both growing up and current, there two times a year when you got presents, Birthday and Christmas.   Rarely have we gone to the store and have I bought my kids a toy to appease them.  (There have a few exceptions I must admit).  Typically though, if they have wanted something outside of those times they have had to save their allowance.  

So, I guess for me that is why I want those gifts to be special is they are infrequent.  But as I looked around my house this fall I realized truly our kids have no wants...the toy cabinet is bursting, they have pretty full wardrobes and we have a working tv. 

My oldest did come up with a list and as she is becoming more fashion conscious hers is full of clothes.  But it was my Alina who stole my breath.  You see we were at the mall and of course there was Santa.  She bubbled over with excitement to see him.  We waited our turn and she went up and told him her hearts desire.  I wasn't in listening range.

Later I asked her what she wanted Santa to bring her and her simple answer made me smile.  She said, "I would like a diary with a lock.  Sometimes I have thoughts in my head that I need to get out but I don't really want anyone else to read them.  I've been telling those to one person, but that's a lot for her to maintain my secrets, so I'd like to be able to write them down and lock it away."

I have no worries over the content of her secrets..thoughts are just that thoughts and knowing Alina her thoughts are not horrible or embarrassing, she just thinks they are.  But how sweet that when she could ask for anything in the world she chose such a simple gift. 

Many may wonder why we still talk of Santa.  Well a couple of years ago Izabella came home from school telling me that some kids were saying Santa wasn't real.  I thought about confessing right then and getting this charade over with.  Until her next sentence, "Mom Santa has to be real.  He brings hope to people and people need hope."  Now I know Jesus is the ultimate hope, but the Saints can help too.

We have always maintained the relationship that Jesus and Santa have (you know Santa helps Jesus out).  I had a friend tell me that she still believes in Santa because he is like magic and we all need a little magic in our lives.  Does she think there are going to be unexplained gifts under the tree?  No, but it's that sense of wonder we lose as we "grow up."  I am trying to let my children have that sense of wonder as long as they can.  So Santa will likely find a way to give little Alina a diary with a lock.

Sunday, September 8, 2013

Waiting to Breath

Mike dancing with me on my wedding Day
"Hey Buck Wheat,"  Words I will never again hear from my brother Mike.  Yes that was his nickname for me...apparently that SNL Character and I held a common bond for Mike.   Now that I think about it, I am pretty sure he was lovingly insulting me...but that was Mike's style.  There are a lot of never again's or never got to's when someone is taken from this world early.  Mike was always the fun uncle who adored his nieces and nephews, but loved to rough house.  He was generous, so I know he would have spoiled my kids and all Bella would have had to do is bat her little eyes and he would have caved.  I know John II would have had him belly laughing...but also he would have been impressed with his smarts.  Training up the next computer generation.

But the truth is, I'll never really know what it would have been like to have uncle Mike in my kids' lives.  He left this world when Bella was 5 months old.  He in fact died exactly two weeks before her baptism and the invitation to the event was still in his mail box.  He never even saw it. It was sudden.  He was 36 about to turn 37 in 4 months.  We never really got a good answer from the autopsy, except that he wasn't exactly kind or easy on his body and years of abuse took it's toll.

But he was young.  He had not had children of his own and no wife (though Vikki always felt like that to us). The last time I saw him I can say he didn't look well but he didn't look like he would be dead in two months.  We had a family BBQ for the fourth of July.  That was the last time I saw my brother alive.  He held Bella once.

Baby Izabella on the 4'th

He also pulled me aside and had a older brother conversation that in hind site wreaks of foreshadowing.  He told me two things that have remained with me. First, he told me I chose a husband wisely.  That he could tell John was a good guy, who loved me and would take care of me.  He told me the smartest thing I ever did was marry him.  The second thing he told me was if we hadn't picked Bella's Godparents they should be Gabe (now called Nino) and Erica.  Well he was half right, Gabe is Bella's God father and Erica is Alina's  Godmother.  And though Mike was never particularly religious I always felt good about those choices, like Mike had blessed them and it made them mean that much more.
Izabella's Baptism

Alina's Baptism
It wasn't until my 37'th birthday last year that I realized something about myself.  I had been holding my breath all those years.  My 28'th Birthday was the most depressed birthday I have ever had.  I didn't even want to get out of bed.  You see every year Mike used to send me flowers or a plant on my birthday...he never missed.  My birthday was exactly two months after Mike died and I knew there would be no flowers from him.    It was another reminder of yet another never again.  Honestly, that day is a haze.  I am glad I had Bella as I am pretty sure she is why I did get out of bed.  But I know despite every one's efforts it wasn't a good one's fault, it just wasn't a happy day for me.

Every subsequent birthday I wanted to be happy.  Just before my 30'th we welcomed Alina into the world.  I wouldn't say that any of them were as bad as my 28'th but it was hard to feel happy that day.  Last year, was the first time I felt the burden of sadness surrounding that day lift.   It made me pause and ask myself why...because I could physically feel the difference in my body.  I realized all these years I felt like I was on a count down.  The fact that I had weird ailments crop up did nothing to alleviate those fears.   But I guess some part of me felt like if Mike, who was larger than life, could slip away in his sleep at the age of 36, then surely meek little me would do the same.

But I didn't.  I have lost friends, family, faced heart ache and triumph and I am still here.  It honestly had not been a conscious thought.  Truly any of us could meet Jesus tomorrow.   But I had been holding my breath wondering all that time.

So, now I breathe deep.  Last year I celebrated with a vengeance.    Every year, September is hard.  It actually surprises me how hard it still seems.  But I guess it's all those pesky never again's and never got to's.  But at least now I can breathe.

Sunday, August 25, 2013

The Politics of Helping

Wanting to do a good deed should be no big deal, but there is that old adage, "no good deed goes unpunished."  As many of my friends and family know Izabella and I have been volunteering at a local People's Kitchen through our church's Youth ministry.  This has grown me as a person.  Well the coordinator for our day had been saying for a few months that soon we would have a new site.  You see the ministry as a whole was using one churches out door space.  It was perfectly set up for it.  It had an area that could be locked up and had a separate entrance so people weren't traipsing through their church to get a meal.  Also, it was smack in the middle of town so it was easily accessible by those who needed it the most.

The church decided not to renew their lease in that spot, so with no one paying the bill for space the search was on.  Now our church has a decent area for it but we are on the outskirt of town so it would be hard for many people to get there.    See this for an article on the People's Kitchen:
Link to Article

Well come August 1 a new home was needed an no good place had stepped up so a temporary site was set up near the back parking lot of Public health.  Well not wanting to spread too much gossip the gist is people have the "not in my backyard" syndrome.  Neighbors are not being that hospitable and to me it's a sad statement on the issue.

As a Christian I am bothered to no end by those that say only the government can help people.  You see food stamps are great, but if you have no kitchen to cook in how are you really going to have a hot meal with those?  That's where churches and other volunteers step in.  The food is provided out of volunteer pockets.  And a permanent space is in the works as soon as enough funds are raised.

We have seen a lot of interesting things over our time serving but overall not many problems.  I understand people's concern for safety, truly I do.  I just have such a hard time with people's unwillingness to get their hands dirty so to speak.  Let someone else deal with it seems to be a pervasive idea .

But it is our problem.  As a christian I feel convicted to help where I can.  As a human I can't stand other's suffering, and as a single income family I realize that we are but one paycheck from needing a meal ourselves.

As a society let's agree to stop legislating and politicizing people's difficulties and let's just help.  I just read an article about church volunteers in another city narrowly missing arrest simply for feeding the homeless.  What was their crime? Not paying for an $800 permit to distribute food.  That is $800 that could go to buying more food to help more people.

Honestly, I am not sure the point of this blog except to to say, that if everyone says, "someone else will do it," we will run out of someone else's.  If everyone says, "not in my backyard," pretty soon we have no where left to go.  Instead hold out your hand and help, don't wait for someone else or Uncle Sam...Uncle Sam is going broke and quick.

Monday, April 15, 2013

Big G and Hasbro Go Retro...Only at Target

I was given the opportunity to Check out for myself the Retro look that General Mills and Hasbro took with some classics.  The games  are only available in their retro look at target through April 30'th.

For a family who LOVES to play games this was very cool.  The games come in high quality wooden boxes.  We were sent Parcheesi® Vintage  and with my gift card I was sent, as well as the $5 off a Hasbro game coupon, which is on every marked package of cereal, I bought the classic game of Clue® Vintage.

I can't wait to share these classics with our kids.

Disclosure: The prize pack, information, and giveaway have been provided by General Mills through MyBlogSpark.
  • Don’t forget to go online & print a coupon for $1 off 2 General Mills cereals before you head to Target! (
  • Collect all 5 different throw-back packages that each include a $5 coupon for these vintage Hasbro® board games; available exclusively at Target® from March 15, 2013 to April 30, 2013 while supplies last. Coupon valid at Target stores from March 15, 2013 to December 31, 2013.
  • Participating Big G cereals include: Cinnamon Toast Crunch® (16.2 oz.), Lucky Charms® (16 oz.), Honey Nut Cheerios® (17 oz.), Cheerios® (18 oz.) and Cocoa Puffs® (16.5 oz.)
  • Participating Hasbro vintage board games: Clue® Vintage, Scrabble® Vintage, Parcheesi® Vintage or Risk® Vintage

 My family had a great time going retro and we hope you enjoy it too!!

Wednesday, February 20, 2013

"Mom I've Been Waiting..."

A week ago a video was played in my MOPs group.  It was moms confessing things they swore they would never do when they had kids, but have succumb to once they actually had them.  Things like, "I swore when I had kids we would not go out in public with food on their my kid has food everywhere, every day."  We all laughed at this video knowing full well we too are guilty of this.

I have lots of these confessions, but my biggest is probably that I swore I wouldn't be that mom that medicated her kids.  "There are so many over diagnosed behavioral and learning issues," I would argue.  Or "Most of the time it can be mediated by parenting changes or diet."

Wow does God have a way of showing us humility.  My middle daughter has constantly struggled and we thought the treatment of her epilepsy would combat these struggles.  Well it did, some of them.  But it also brought to the front other struggles which had been masked by the seizures. 

This entire school year has been one of her teacher and I in constant communication wondering at what could be going on with Alina.  She is smart enough certainly. But she still has that day dreamy quality to her, preventing her knowledge and insight from being shared.

Well, after a year of treating her, her neurologist determined that she also struggles with ADD.  This was a hard and bitter pill for me to swallow.  I mean I know things could most certainly be worse.  But of all things...seriously!! "The one I swore I would never medicate for is what you think is preventing my child from succeeding?"

Thus we had an internal battle, where we had to make the most prudent choice for our daughter, knowing whatever we chose could possibly have lifelong consequences.  I talked to others whose children battle this and found out what their life was like before and after medication.  I looked up the symptoms of ADD and what I found was the perfect description of Alina. 

So we waited the two weeks to begin medication that the Doctor had recommended.  Last Saturday I gave my daughter her first dose of a medication I vehemently swore would never be in my home.  I don't know what I expected.  Her head to spin around, or some magic wand giving my daughter wings? But we watched her all day.  She smiled the entire day, she was giddy, she was helpful, and sweet and didn't fight with her sister once.  Now from my perspective that in itself is magic.  Several times Alina told me she liked the medication, she felt good on which my mind said, "great we've created an addict."

Late in the afternoon, Alina started crying.  I asked her what was wrong.  She said, "nothings wrong mom, I am just so happy.  I think this medicine is working, I haven't spaced out once.  Mom, I've been waiting for two and a half years to feel normal and I finally do."

Now you may pause here (dab your eyes) and then think, "sure that's what she said!"  But it is.  That is the exact wording my daughter gave me...Mom I've been waiting two and a half years...

Can you just imagine not feeling comfortable in your own skin and someone gives you something, and suddenly everything just feels right?  Wow.   Time will tell if this truly helps her focus and have more success in the class room.  But could you imagine if I let my ego rule that decision. 

The experience made me realize, that most of the time we really don't have all the answers and sometimes we have to give our trust to God.  I am so cerebral at times, and want to control everything (just ask my husband), I think I need to have this lesson hammered into my head. 

Maybe I'll just hold on to the mental picture of my child weeping tears of joy...maybe that will be reminder enough.

Thursday, January 3, 2013

Appreciating our Uniqueness

This Christmas was one of the best I've had in recent memories.  Why?  Well I think it's because my family wasn't uptight or stressed.    We just decided to enjoy each other's company.  It was relaxed and fun, plus we had good food.   The kids didn't have the one up feeling either so they enjoyed their classic and simple gifts.

One of the best gifts I received was a reminder from our priest.  You see this past Sunday was the celebration of the Holy Family.  Along with this came a wonderful reminder about appreciating our children for who they are, not who we want them to be.  He recounted the story of a childhood friend whose dad often told her that she could be anything she wanted as long as it was a doctor.  We've all heard the stories of parents trying to do a reboot on their own lives by living through their children.  In the end our priests friend became a nurse and a mom, not a doctor.

Father Ken went on to remind us that we are the body of Christ and each of us is gifted differently as we serve a unique purpose.  This world would be mighty boring if we were all the same.  It made me take a good hard look at my children and my parenting.

I've learned that we can't parent our kids the same way.  I always thought we'd be the "fair" parents that had the same rules for all of our kids.  But I learned that a child over coming epilepsy may take a different style since she has to be reacquainted with the world.  So here is my take on my three kids.

For Izabella, academics does not come easily.  She is smart but I think it just isn't where her heart is.  As her mom, it is hard to watch her accept a lower grade when I know a higher one is certainly within her grasp.  She struggles some in her peer group as math seems to come quite easy to the other girls in her grade.  But what comes easily to Izabella is people skills.   I have been told by many that she can just light up a room with her smile.  Having lived life, I know her intuition about people will likely take her farther than book smarts. 

She is the one who picks up those who've been kicked.  She has a friend that she has now deemed her "best friend" in school.  This girl is certainly the underdog.  This girl has not had the easiest time of it in any way you look at it.  After 2 months of struggling with the "in" crowd to find re acceptance for herself, Izabella  was finally granted admission.  Then she paused as she realized her friend, had not found such acceptance.  So what did my girl do...she put herself between the weaker girl and the "in" crowd.  She stopped and asked the group to accept her friend.  So, they did.  It came to a point where this group of girls lost interest in isolating Bella, because Bella lost interest in them.  She, on her own, decided that being popular wasn't important, but being a good person and a good friend was.  Am I proud of my bet.

 I think I admire her more for this because as a kid I was the underdog.  I always hoped somebody would stick up for me, but none of my peers did.  It wasn't until high school where I found an entire group of misfits that I finally fit in.  Even despite keeping my nose out of the cool kids' sphere, it still seemed necessary to spread untrue rumors about me.  I wish I had had a friend like Bella at that time in my life.  All my friends heard the rumors and they themselves were too self conscious and, despite knowing the rumors were untrue, no one spoke up for me.   Her empathy to others wows me at times.  At other times her flair for the dramatic is irritating.  But as Father Ken reminded...God has gifted her, just not the way I initially thought my children would be gifted.  I also am amazed at how easily my daughter talks about Jesus Christ and how He died to save us.  She has led other's in her group to prayer.  I was never brave enough to do this at her age.

Alina has been gifted with humor and insight.  Alina is very logical and simply gets how things make sense.  She is in no way an easy child.  Her epilepsy has caused behavioral issues we are struggling to correct.  But her mind is complex and inquisitive.  Once after several weeks of Alina coming in from playing outside, just covered in dirt.  I asked Alina, "why do you always have to find the dirt to play in?" Her response..."Because God made me to like dirt."  Her teacher told me that Alina, if allowed, would likely spend entire days out in the school garden tending the plants. 

She has a strict definition of justice and right and wrong.  Some things that kids at school do, she simply can't understand why someone would even do that.  This is especially true if someone gets hurt.  Alina just can't wrap her mind around doing that.  Now don't get me wrong, if it's her sister, hauling off and whacking her when she's annoying seems ok.  But random acts of violence, she doesn't get.  Alina, is smart as a whip, and if it has rules she feels safe as she knows what to expect.  That Logical mind is one of science or engineering, but her sense of justice is attorney like, and her smarts can take any one of those places.  But her ultimate goal is to be a mom with culinary skills.  She could be anything and she wants babies and to stay home with them.  She told me just the other day that she feels lucky that her mom doesn't work because the kids whose mom's work have to go to child care after school and they don't like it.  She told me, "thanks for that mom."  Can you say tear up?

 I can picture a future Alina, with her inquisitive nature sharing the wonder of the world with her children, she herself enjoying the natural order of things.  I can also see her enjoying the chemistry of cooking and her getting sheer joy of preparing a culinary success for her family. 

Then there is John II.  What a charming little boy.  John II is only 3 (well almost 4), but in many ways his life experience has aged him.  At 2 he knew the pharmacy was where we get medicine.  He knew the words Blood draw and Doctor's appointment by 30 months . I'll never forget my my 31 month old telling a friend he had "to go to the pharmacy to get my prescription."  To me these are words a child of his age should not see as second nature. 

For some reason my boy has seemed a miracle to me before he ever came into the world.  Perhaps it's because we lost a baby just before him and it struck my heart, and also made me realize that a pregnancy does not guarantee a child.  Then we struggled to get pregnant again.  We had decided if that month we weren't pregnant we were done trying.  I couldn't handle the heartache every month and decided it would be best to just know we were not having another.  Low and behold I was already pregnant when I made that decision.  Maybe it's because I had been told that having had 2 girls we were likely to have another, and I love my girls but I really wanted a son too.  All of these things added up to him stealing my heart the minute I saw him.

I admire the strength of spirit that is my son.  I remember being told by the Dr.'s that his muscle tone at 16 months was that of a 1 month old.  Yet somehow he had figured out a way to get around.  It wasn't until later when I really watched him that I realized that he was very interested in everything, but getting to everything was hard for him, so he had developed methods to get there.  First of all he scooted...but he couldn't get to the sitting position on his he had developed a cue for me to put him in the sitting position (and I hadn't even realized I'd been trained).  He then would get his sisters to get things for him that were out of his reach.  I think the adversity he began life with strengthened his personality.  This boy can walk into any crowd and will own it in a matter of minutes...just ask anyone.   God granted him perseverance and my boy is no quitter.  This is a true gift.  Many have conjectured that he will become a doctor and find a cure for Mitochondrial disease.  Who knows...maybe.

I have always said I would rather raise good people than the smartest or most beautiful.  To me it's important for my kids not to be arrogant, self centered but rather to see other's needs and try to fill them.  I watch all three of my kids in their own ways do this.  Father's message was a good one to me as we recently got report cards and it's clear neither of my girls are top of their class.  But I know for the most part they are trying their hardest.  Best of all, I know they are treating others with kindness and for that I can be proud!!