guilty

There's this sense of guilt when asking for help.  You know?  Especially when you don't look sick. But you have to get over it.  The pride for me is what gets in the way.  What will people think of me?  "She walked yesterday; why is she in a wheelchair today?"  "She went to that friend's house yesterday; why can't she come to mine today?" Fear of man, fear of what people will think.  Get.over.it.  I have to tell myself that all the time.  SO many people want to help.  Let.them.in.  I repeat that too.

Well, this is a half-tribute to my mom too.  I can't speak for her, but I can imagine how she might feel.  She came here to help me.  My mom - she already raised 4 kids and now she's here semi-raising my three. Sometimes I wonder if people are thinking, "Well, her mom is there to help, why would she still need help with chores or with the kids or with...."

Here's why - My mom works so so hard.  Anyone with kids will know that caring for kids is hard!  She gets them up, makes breakfast for each one, puts them in high chairs, wipes faces, drives one to therapy some days when I can't, then makes breakfast for ME, does the dishes - that's all before 8:30am, mind you - then it's interference time.

An almost 4 year old and an almost 2 year old need interference-running all the time.  And teaching.  We are teaching them to be kind, godly little ones.  We trust my mom with that.  We don't trust just anyone with that.  When I'm able, I do it, but when I'm not, she does.  And do you know how exhausting THAT can be?  Our almost-7-year-old needs godly input too.  She's not done learning.

Then it's lunch time.  Make lunches, high chairs, wiping of hands, etc.  All over again.  Picking up little girl from therapy.  Then it's bliss time - adult lunch while kids play upstairs where we can hear them and they watch a movie.  But my mom doesn't get to rest -- she has to make MY lunch, make sure I'm not about to have a seizure, etc.  Then it's nap time.  For EVERYONE.  Well, "room time" for the kid that doesn't nap.

By the end of nap, I can see my mom is getting tired.  Then....THEN, she works.  Did you know she works?  She gets to work from home thankfully.  But she has to work part-time.  I remember the days I worked from home and raised ONE little one.  I was exhausted all the time.  But my mom does it somehow with three kiddos who aren't even her own.

Matt makes dinner when he gets home and while my mom works, but if she can, she runs more interference during the "witching hour" at our house -- that hour and a half before dinner when every kid becomes a little Tasmanian devil.  At bedtime, she even will take a break from her work (that sometimes is not a good idea to break from) to help put the kids to bed so that she can help her son-in-law.  She is so sacrificial.

Somewhere in all that we manage to get laundry done. It helps to have two little who know how to put laundry AWAY.  But the washing and folding is still a one person job (unless I'm having a particularly good day and can just sit on the bed or couch and fold).

So what does that leave?  It leaves housework (which gets done when it can by...you guessed it...my mom), lawn work (Matt is exhausted from work, making dinners, and worrying about me/caring for me at night), and general other house stuff.

There.  There is no guilt in it.  Help is needed and we've already seen it generously pouring in.  Thank you to those who have helped.  Thank you to those who have tangibly helped and encouragingly helped, and most of all, to those of you who are PRAYING.  We don't give up on praying.  Keep it up, please!

Time to rest.

sorry

I never wanted my kids to see me have a seizure.  My husband was always good about blocking me from view or calmly telling them to go play upstairs.  I still am not positive they HAVE seen me have a seizure, but I know the girls (who are both old enough to talk) both know something is up.

Last week my oldest daughter said, "So, if you have one more seizure we aren't going on vacation?"  I don't even think she knows what a seizure is, but she knew it might ruin our family vacation because she overheard Matt make that comment in a moment of desperation.  In private he said, "So when do we decide to cancel vacation?" as I lay there sweating and immobile after a particularly bad seizure only days away from departure.

It's hard to have kids and be "scary" sick.  Before, I could just lay there and smile when they came up to me.  Now I have to hide. Or at least that's how it feels.  I don't want them to see the weak, sickly mommy, plus, their noises can make me sicker!  So instead they just know I'm up in my turret hiding away and fun Grandma gets to care and play with them.  On good (or let's say "better") days, I use my oldest as a messenger sometimes.  She comes in to the room every once in a while and kisses my hand and lays her cheek on it affectionately like a dog might. (side-note -- can anyone please convince my husband that a dog's presence might help comfort and heal me *wink*).

I'll relay messages to her.  "Will you tell Grandma that I need a quick snack?"  She runs helpfully and joyfully.  I think she WANTS to help.  She's old enough to know that I desperately need to get better and she wants to help save the day.  "Will you tell Grandma that I need water and fast!"

She ran. A few minutes later my daughter was carefully walking into my room. Carefully because, in her hands (it required both), was a beer stein, heavy and brimming with water, threatening to spill over the edge.  "It was the only glass I could find."  I wondered why she didn't tell Grandma.  "I could do it. I wanted to get you water. Here it is"  She smiled so cheerfully and so satisfactorily.  There was even a straw in it.  It made me want to cry.  She sees Daddy put straws in glasses of water when I am having a seizure. It's the only way to get water in sometimes. 

I feel sorry for my kids a lot of the time.  I go in and out of knowing for certain that God has me in this place and KNEW my kids would have a mom like this.  There's no reason to feel sorry for them.  They don't even know any different and they are HAPPY kids.  They love life, and they are learning to love God.  They see us pray and trust and isn't that what we are here as parents to teach?  

But there are days that sometimes turn into weeks of feeling sorry that they have to see their momma like this.  Especially the younger ones who just want mom to come give them a pony ride.  "Are you SICK or are you just resting?"  my middle child asks a lot.  She thinks both are bad, but she hears those terms a lot.  Sick.  Resting.  "Don't close your eyes, Mom." She says that if I'm downstairs in their company.  Funny, because her older sister said the same thing at that age before I knew what was causing me to be bedridden.

I know I shouldn't feel bad.  I shouldn't feel sorry.  God did ordain this time and He made little minds to NOT comprehend the magnitude of an illness like this.  They can hear "sick" and "resting" and maybe have a bit of fear, but it's not the fear we adults have.  And I'm thankful for that.  And I need to keep reminding myself that my kids are blessed to be in this family.  Some day they will see that Mom and Dad never stopped trusting God throughout tough times.

And I need to always keep that picture of the overflowing beer stein in my head.  A joyful face.  My cup overfloweth.

deceitful

Not in the sense that I'm trying to lie.  But I will tell you what - so many...SO MANY people ask me or ask us "How are you doing?"  They know our situation.  They know I'm having seizures...on OFF weeks.  I'm not even killing bugs and my body is going haywire.  It's just so overloaded I can't detox enough.  My seizure meds are at doses through the roof.  And they are helping, but just not enough.  We are in constant communication with the doctors.

This might be how I look

 The deceit goes like this:

*"How are you guys doing?
"Well, we're not doing great.  We're scared." We're terrified!  We are at a breaking point.  Heather cries often so ready to give up.  She begs to go home - to her heavenly home.  That scares Matt.  He wants to take her pain away.  He wants to take her place. He wants to be able to fix her.

*"How are you feeling?"
"I'm not having the greatest of days today" I'm suffering; so much that you wouldn't be able to grasp it.  I'm in pain/I need encouragement.  I can't think straight and my mind is foggy so I'm sorry if I have repeated things or said things that offended you.  Hurting you is the farthest thing from my heart.  Alienating you is too, that is what I answer simply.  I WANT to hold on to my friends!

But this is how I feel

*"How can we help?/Is there anything we can do to help?"
"Well, it's hard to think of something now, but we'll let you know." Oh how we'd love a meal but we have allergies and have to be so careful.  If you understand gluten-free then yes, but how can we just ask you that.  Most people do not understand gluten free cooking and Heather will get very sick if she has even a little gluten.  
Heather would love to get out of the house sometimes but can't drive a lot of the time.  But that can be hard to schedule because each morning/day is different for her.  Matt would love to get out and spend time with a guy friend.  Heather would love someone to take her to run a few errands she can't just send Matt or her mom on.  Heather's mom would love a break taking care of the kids but Olivia has some special needs.  You have to follow a schedule.  Not hard, but how do we just tell you these things when you have family of your own?  These requests and needs are not ones that would be easy to ask of just any friend.

"How can we pray for you?"
"You can pray that Heather will be encouraged daily by the Word even when she can't read.  That she will be encouraged by friends and not feel alone.  That Matt will be encouraged by the Word and know how to encourage Heather best.  You can pray that the kids will not be afraid or scared.  They sense something is wrong and notice that mommy is in her bedroom all day.  You can pray that Heather won't be lonely.  You can pray that tangible encouragement will bless her from all angles. You can pray for Heather's mom that she will have the stamina to keep up with caring for the kids.   You can pray for Heather's Dad as he is separated from her mom that they will be able to connect though apart and that God would provide a way for her Dad to come visit more often to see his wife."  There is no deceit there.