Christmas Letter

Dear Friends and Family,
    Every year, I sit down and compose a letter to update you on our lives.  Many of you receive this letter and read information you already know.  For some, it is new.  This year, I hardly need to write at all because you all know what has happened.  This year, I am also not sending out Christmas cards.  Why?  Simply because there is just so much to do and I am really tired.
   Every time we seem to be striding towards normalcy,  it feels like we get knocked back.  Twice, Jarrad has broken his leg.  The SAME one.  We are worn out.  If it weren't for all of your prayers and encouragement, I don't know where we would be.  To say I am discouraged is an understatement.  It is hard to remember at this time when we celebrate the birth of Christ that He is still with us.  I feel like my prayers are not being heard - sometimes, I feel very alone.
   Sometimes, it is so hard to remember that we are not alone.
   That is why Christmas is so important.  It is at this time that we are reminded every time we wake up that we are not alone. The lights, the songs, the chorus' of "MOMMY!  I want that!" all remind us that we are never alone (although sometimes a little alone time is nice; especially at 6:30 am).
     God designed this world so that we would not be alone.  He made us for himself so that he would not be alone so why do we feel he would leave us?  Despite all tragedy, despite death and pain, we are not alone.  All of us are reaching out and can find his hand even when things are at their darkest.  It is easy to listen to the news and only hear of the bad things  that happen and forget that God is still here.  You can see him in the angels on earth that reach out to show that we are not alone.  That is God working in us. 
   I was always amused as a teacher when I would talk to kids and tell them that I understood what they were feeling.  First there would be skepticism until I proceeded to describe the feelings and emotions that they were enduring.  Amazement always dawned as they realized that perhaps they really weren't the first to feel this way.  And I could get away with saying I knew what they felt because I wasn't their parent.  We read stories of Christ of how he wept and was angry about how the temple was desecrated.  How he held children -perhaps not so much for them as for himself?  We read of his frustration and his loneliness.  How he pleaded to have his burden lifted.  These are not recorded just for documentation but to show us that we are not the first to have these feelings; to establish his humanity.
   I listened to a song - one I have heard a million times - "Mary, did you know?" recently.  Never paid much attention but I can tell you the answer to the question now. No, she did not know.  No one wants to "know" that their child will hurt and suffer even if it means that they save the world.  She may have guessed but she put them away in her heart.  We never "know" how things are going to turn out.  We only hope for the best.  Would Jarrad and I have willingly chosen this?  We can't control what happens to us as much as we would like to but we can control how we react.  Our friends, family and most of all, our faith is what helps us to handle it.
   We struggle, we fall and we continue on.  It is my wish that through this, hopefully, God will be glorified.  I am not sure how much because I am only too aware of my own shortcomings but then I only have to be available.
    Merry Christmas.  May this new year have blessings for all of you as you have so richly blessed us.  
                                                                                           Jarrad, Belinda, Emma and Sam

3rd hospital? Or 5th?

    This morning, Jarrad called and said he could come home today - yeah!
    Then he said that the doctor breezed in, told him that he could go home, told him to keep weight off it for 6 weeks and breezed out.  I am almost sure that it didn't happen that way but I know what it is like when you get news that you weren't expecting and can barely wrap your brain around it when they say "Do you have any questions?" and you are gaping at them like a fish and floundering like said fish out of water.  So, no, you have no questions right until they shut the door  behind themselves and you then have 20. 
    I just tried to call him with another one but he didn't pick up so I hope that means that he is getting some answers.
    Me, I put Sam in front of cartoons, crawled back into bed and proceeded to cry for 1/2 hour.  Then I showered, put on my big girl panties and now am going to get ready for the day.
    What else can you do? 

can't catch a break . . . or catch another one.

     Last night, I told a friend that you get to a point where you have to pull from somewhere outside of yourself for strength because you have nothing left.
    How do you know you are at that point?
    When your burdens are so tangible, that they are physically weighing you down.  When your eyes sting because of unshed tears.  When your eyes hurt because of shed tears.  When your brain is foggy.  When you know you have to eat but just can't do it. Or you eat too much just to feel something. 
     I feel like every time we start to get into a rhythm and things seem to be going ok, something happens and it knocks us back even further.  We are not treading water; we are trying to get our mouth to the surface.
    
    Jarrad fell again.  He was transferring, had a spasm and it threw him out of his chair and onto his knees except from there, he fell to his side because he can't hold himself on his knees.
    And he has a fracture in his lower leg.
    The SAME leg as before.
    Really, can this get any more ridiculous???
    We elevated his leg that night and the swelling went down and then spent the next morning at the Dr.  getting x-rays only to be told we have to go to the ER and get a splint.  ONLY to be told that he needs MORE surgery!!!  
    Thank you, God, for good friends that don't mind going to the ER with him.
    Thank you for the MANY friends who called that morning to take Sam or offered to watch the kids.

    And I know that God doesn't work this way, but I feel like He was saying, "Ok, Belinda, put your money where your mouth is.  Let's see what you do with this."  Or maybe He is.
     It doesn't really matter.  What matters is what I do with this.  I can give up and fall beneath the water line and pull everyone down with me or I can keep trying. 

     I have too many people depending on me.  I could use them as an excuse -  say and act like they are weighing  me down.  I won't because the truth is, they are my life preservers.  It is a matter of how you look at it. 
     Jarrad's smile and his ability to crack jokes when I know he is bored in the hospital and just as frustrated as I am makes the 40 minute one way trip bearable. 
     Emma and Sam's hugs and kisses when they see my blotchy face and brimming eyes really do ease the pain of hurt and worry.  


     Life preservers.  Suddenly the water has a bottom and massaging jets.

bear butt

    So Samuel likes Brave.  In particular, he likes the little boys - Hamish, Harris and Hubert.  Probably because he can relate to their mischief.  And being a boy and 3, he really thought it HILARIOUS when their little "bear" butts were shown.  
    And I made the mistake of grabbing him when we were watching it, pulling at the back of his pants and saying "bear butt".  
    Which made him collapse in giggles.  Come on- little boy (and  girl) giggles are the best!
     So I did it again.
     Yeah.  I have no one to blame for the ultimate outcome but myself.
     In my defense, I was trying to teach him the duality of the word - bear and bare.  
    Ok, that was a lame excuse. . . 
    
    So, I was outside, chatting with the neighbors across the street, when I hear Samuel call, "Mommy!" 
    And I turn around just in time to see him pull his pants down and hear the rest of his sentence . . .
     "BEAR BUTT!" 

And that is part of the reason why this blog is titles "Minivandals".   

REALLY????

    And then, as I was trying to make a good dinner of marinated, grilled chicken breasts, steamed veggies, homemade applesauce and (instant) potatoes (ok, I fell down on the job there).  Apparently, something was disconnected and the control panel caught fire and  melted.
    I am proud of myself that I kept my cool and turned off the gas. 
Does a gas fire require flour or water?  Is it like grease? In any case, the first big thing Jarrad and I purchased together is now gone and we need a new grill.
  
    Sigh.
 
    No one was hurt.  The house did not catch fire.
    It is just one more little irritant.  
  


     Sigh.

    

need SOMETHING to go right

    Have you ever sat in church when the pastor or whoever prays something like "Come Lord" and you hear a chorus of "yes"s?  They sound so fervent.  And I always felt guilty because I would add "but not
until . . . ".  Until I had my first kiss, until I explored some of this earth, until I was married, until I had kids, until I had grandkids.  I just wanted to experience life.  Everything. 
    And now, I am just tired.  Tired of things not going the way that they should.  Now I want to say, "Lord, please come because I don't want to deal with this life anymore."  I am DONE!
    Want a list of my petty reasons why I am done?  Well, some aren't so petty but these first ones are.
1.  The cabinets that we waited for and ordered and finally arrived have the wrong doors and no shelves so now we have to wait another 10 days to get the right order.  (Hello, did no one READ the order???  Black and white, folks  -RIGHT THERE (visually finger stabbing). 
2.  The new bed frame we got because the other broke did not come with all the hardware so now that I have finished staining and waxing it and am ready to put it together, I can't.
3.  This house is ALWAYS messy.
4.  It is rainy.
5.  Jarrad's HO (heterotopic osification).
6.  I just want Baby Whatsit to be Ok.
7.  And I want someone to return my phone calls!!!  Any of them.  I don't care who - Home Depot, the furniture place or anyone that I tried to call for some answers.

   Those are just a few of my irritants.  I am hoping that by writing this, I will have blown off some steam.
    I am just so tired of all this crap.  Could something, anything please turn out all right?  I know that sounds ungrateful to all the folks that tried their best to make things as easy as they could for us but I wish that you didn't have to.
   The next time a pastor prays for Christ's 2nd coming, I will be one of the fervent ones saying yes.  Just because I don't want to deal with this crap anymore.  And I know that isn't the right reason.  I should say it because I want to be with God; not because I don't want to deal with this life anymore.
    I am just so discouraged.   
   

birthday . . . again

    Happy 36th Birthday to ME!
    As a mom, there are certain things that you give up - like someone else making you a cake for your birthday.
    Jarrad is going to read this, and his first reaction will be hurt.  Sweetheart, I love you but let's face it, these last few years, you have just been too busy to make me a cake (and to be fair, folks, he has bought stuff).  I would much rather that you spent your time playing with the kids or cuddling with me than baking me a cake.
    However, as a mom, you realize that your children need the cake for there to be a birthday.   And they get just as excited over your birthday as their own.  Ok, maybe not as excited but they expect you to be excited - even if it is just because there is cake.  So you wait till they are in bed and you make your OWN cake.
    I am not a cake person.  I prefer pie.  Mom made me a pie (Thanks Mom) last weekend for my birthday (she also got me a trip to a spa - whoo hoo!). Side note:  children need cakes ON the birthday.   There is one cake, however, that I do like.  It is Jarrad's carrot cake.  He made it for the first birthday we spent together so it has a lot of special memories in addition to be the best carrot cake ever.

WARNING:  Making and eating this carrot cake will ruin all other carrot cakes for you.  Make and eat with this knowledge.

Jarrad's Carrot Cake 

aka I love you cake 

because my birthday is when he told me he  loved me.  
Can I get some "Ahhhh"s?

1 c. sugar
1 c. oil
3 eggs
1 1/4 c. of flour
1 1/3 tsp. cinnamon
1 1/3 tsp baking soda
1 1/3 tsp baking powder
1 tsp salt
2 c. grated carrots
Optional:
1/2 c. of chopped walnuts
2/3 c. of raisins (although not adding raisins does take away some of the sweetness)

Preheat oven to 300

If using raisins, heat water for 2 min on high in microwave and put raisins in to "plump".  When ready to use, drain water and add.

Mix sugar and oil.  Add eggs one at a time.  Combine flour, baking soda, baking powder, cinnamon and salt.  Gradually blend into oil mixture.  Add grated carrots.  Add nuts and raisins.  Pour into 9x13 or 2 8 inch pans and bake for 1 hour. 

NOTES:  Go heavy on the carrots and don't worry about chunks - it is all good.  Also - you can use rice flour for a gluten free alternative.  Add more cinnamon to taste as it will hide the rice flavor.  The cakes won't rise as much as with flour and you can hardly taste a difference.

Cream Cheese Icing

8 oz of cream cheese
1/2 cup of butter -both have to be soft so set out while you make the cake.
approx. 1 cup of powdered sugar (depends on your taste)
approx. 1 tbs of cream or milk 

PS - this is for those of you to whom I have promised the recipe - promise fulfilled.  

thank you for coming

    Saturday, we invited just about everyone we know to come and see us.  It was a small way to say thank you to everyone who was there for us.  We (the kids, Jarrad and I) had a great time and I think all of our guests did too.
     Jarrad always loves having folks over.  For me, it is stressful because I worry about cleaning and what folks will "think".  It is hard to adjust because I certainly don't think about clutter on someone else's counter so why do I think that they would care about mine?  I am learning.  At least I don't scrub the base boards anymore . . .

So old picture - but the little one is to whom I am referring. 

     It was an open house so that folks could come and go.  The majority came and didn't go.  That is great.  I love the fact that everyone can come and talk to everyone else.  I happened to look out the door at one point and saw a childhood friend coming up the driveway.  She is my "oldest" friend.  I have known her since kindergarten and have known her husband just as long.  He daughter was my flower girl.  I helped her husband propose to her (it was a lot of fun to have that secret!).  She and her family drove 7 hours to spend 3 with us.
     I am starting to cry just thinking about it.
     (ok, I just cry a lot lately).
     One of the things that I tell my "northerner" and "southerner" friends is "Oh, you would really like so and so."  And I got  the chance to introduce folks.
     Yeah!  
     And they liked each other!
     Yeah! 
     And it is over!
     Yeah! 
     But if you missed it, we would still love to see you.  Maybe you will be lucky enough to see the finished bathroom. 
     Maybe, it will be finished this year. 
     Maybe.
     Hopefully. 
     Sigh.

Thanksgiving

    Happy Thanksgiving.
    Growing up, my mom always had us share something for which we were thankful. I always hated (and dreaded) sharing because everything I shared, everything that I thought of sharing, always seemed so shallow.  Aren't we supposed to be thankful for something on the magnitude of that of the Pilgrims and their feast?  (For an interesting look on the history of this National holiday which also includes a commercialism aspect, look at this site http://www.scholastic.com/scholastic_thanksgiving/feast/)
   This year, we woke at 7:45 to children's laughter.  Apparently, at some point in the night (after Sam got in bed with us), Sam crawled into bed with Emma.  Breakfast was doughnuts and eggs, coffee and milk and the Macy's Thanksgiving Day parade.  Stuffing the turkey and putting it in the oven for a 3 o'clock meal.  A good morning.  Relaxing, enjoyable.
    So why do I feel like crying?
    Maybe because this year, I get it. 
    I finally have something to be thankful for on that magnitude.  I finally understand why they chose to give thanks.  And a part of me desperately wishes that I still lived in uncomfortable ignorance.
   This holiday, is in essence, about celebrating survival. 
   I have been sitting here, trying to put into words what I mean.  Words do not express emotions.  We try; that is why we have poetry.  Words try but there is nothing that adequately describes when you reach that point where you have to pull from somewhere outside of you just to make it for one more day.  Nothing describes when you feel immense guilt and relief that that person next to you is not you.  Raw determination.  Laughter that shocks your senses because you shouldn't laugh now.  Joy at a normal day.
     I think about the Pilgrims being scared and determined but not having much of a choice.  I think of who and what they lost.  I think of their faith.
    We will celebrate.  We will survive and with God's help, we will thrive.
    Today, I will give thanks for today, for surviving.  Tomorrow is what it will be, but I can be grateful for today.  And that will help me with tomorrow. 
   

and yet

     Yesterday, I went to the park with the kids for half an hour.  We had to get Jarrad some medicine and a friend texted as we were walking out the door saying she was at the park.  We went to CVS where I fully expected to pay a min. of 150 for Jarrad's meds but apparently insurance decided to pay for it and we only had the 10.00 co pay!  YEAH!
     Anyway, we get to the park and chat.  K says that Jarrad is looking great.  She saw him not long after he got home and saw him again on Halloween, she could tell that there was a difference.
     I guess that there is.  No, I know that there is.  The Chair has become a part of our life.  It is just there. It takes a little longer to do stuff but Jarrad is getting stronger so it takes less time than it did even a week ago.
    And this week, he said "yet".  A 3 letter word that marks a strong emotional and mental difference.  Before, he would become frustrated with what he perceived that he couldn't do and that is where he stopped. This week, he said yet.  I can't do it.  I can't do it yet.  One is final and one is temporary. 
     Poor Jarrad.  Even when we fight, I fight about his word choice.  So when he said "yet", I did a victory dance.  It involves me bouncing around in a circle pumping my fists.  This was in my head, I hadn't had my coffee yet. 
     Don't get me wrong, I know that there is some stuff that is just not going to be worth the trouble it would take to do it but the thing is, we COULD if we wanted to.  
     I am so proud of him.

don't feel so good

    I feel blah.  My stomach is rumbly.  I have no motivation.  It sucks.  I just want to crawl in bed and not even sleep just lay there. 
    Can Sam just watch cartoons all day while I check out? 
    Blah.  No, I have to be "responsible" and try to do something around here on my check list.

1.  Paint the wall where dad installed a light switch for the exterior (he is coming next week, better get it done.)
2.  Go to CVS and get meds for Jarrad
3.  Post office
4.  Clean the kids bathroom because apparently they had a toothpaste fight. 
5.  Dishes - the never ending pile of dishes.  I need a new dog. 
6.  Make beds.
7.  Mulch. 
8.  Apply what I am calling rumble strips to ramp so Jarrad doesn't go skating down the ramp like he did on Wednesday.  That was kind of scary as I grabbed him and he dragged me along. 
9.  Go through all the papers on the desk and green counter
10.  Move things to garage and under house. 
11.  Work on dinner. 
     Blah!  I am going to lay down for a bit and hope I feel better when Charlie and Lola is over. 
 

celebrate thanks

second week in ICU

    My blog has been about our adjusting to this new life.  It didn't start out that way.  It was supposed to be about my "minivandals" and mini van life.  It still is but with a new "feature".

    Life sometimes takes a detour that we never would have anticipated.  I am so glad that we aren't driving alone.

right before we left for PA

    We have been and still are so blessed.  If I were a better person, I would personally hand write thank you's to each and every person but I am a very tired person.  My desk is covered with papers and Jarrad and I went through 3 boxes (size of laundry baskets) last night of paperwork.  We have one big box left.  (I keep hoping it will disappear but I think it is still going to be here tonight.  Sigh.) It sounds like an excuse but I know that most of you are nodding your heads in understanding.  Most of you are saying things like we don't expect anything; what we did we did out of love.  Love for us, love for those who love us and love for God. 
    Still, I, we, owe you all so much.  The least I can do is try to say thank you, even if it is just in a blog or mass email. 

    Because of you, Jarrad is alive.  He is doing well.  He is healthy. 
    Because of you, we were fed.
    Because of you, we had gas.
    Because of you, we were able to go to a rehab that best suited our needs.

October

    Because of you, we were able to renovate our home so that he could come home.
    Because of you, we HAD a home to come home to.

new chair

     We learned so much in rehab.  The least of which was how to dress and move.  We learned that too often, folks are abandoned by their "friends" and even their family.  We learned that we were lucky because we gained even more friends.  We learned that some folks hadn't given any thought to their home.  We had all of you who did.  We learned that to give up and sink into depression is a cost we weren't willing to pay.  YOU inspired us to keep going.  How could we stop when we had so many cheerleaders? 

    So THANK YOU.  Thank you for your prayers, your cards.  Thank you for your encouragement.  Thank you for your love.  Thank you for your continued encouragement. 
     We would love to thank you in person.  We would love to show you the beautiful (ok, it is only half completed) bathroom that you made possible for us.  The ramp that allows Jarrad to come in and out.  We would like to invite you to our open house on the Saturday after Thanksgiving, the 24th from 1-5 to thank you in person.  Please, drop by if you can. 

and assumptions

     Happy Veteran's Day.
     I have the privilege of having 2 grandfathers, an uncle, 2 cousins and a cousin's husband  and a father in law who have served as well as 2 friends.  To them, I say thank you.
     At Church yesterday, our pastor (himself a vet) preached a sermon that spoke of human service and Christ's service.  One of the things I like about our church is that the pastor takes scripture and makes it very relate able to us today - as it is and should be.  He talked about John 15:13: "Greater love has no one than this, that he lay down his life for his friends."  Yes, our troops sign up to protect us and our ideals but in the thick of it, they are fighting to survive and fighting to protect those who are right there with them; something that they learn in training. He connected that scripture to that idea.  It makes it very poignant and creates a very real picture.
     Those in church who served were asked to stand so that they could be recognized for their service.  Afterwards, a man came up and patted Jarrad on the shoulder and thanked him for his service.  
    Insert pained smile here.  Jarrad said it wasn't the first time that this happened to him, either.
    This is what goes through my head.  1.  If it were a stranger, might it be ok to just say thank you on behalf of all service men and women?  No, not really.  That would be dishonest and might do a disservice to those who served (although, from the few vets I know, I don't think that they would mind).  2.  How sad it is that so many of our service men and women are coming home with lost limbs and as paraplegics that the assumptions are that you were in the military. 
    Jarrad says he answers with a "Thank you but I did not serve our country.  I just know the value of a good hair cut."  He says that the person usually laughs and walks away.  I think that is a good way to handle what could be a awkward situation.  
    So to all vets, thank you for your service.  Thank you for sacrificing time and sometimes your body.  
     Thank you.    

on the other side of the desk

     Yesterday, we had our first parent/teacher conference. Well, it was for Jarrad and Emma.  For me, it was my first time on the other side of the desk. 
    When I taught, we always met in the science teacher's classroom for conferences.  We never had individual ones. Maybe it would take too long.  The teachers met as a group to "protect" each other.  See, parents can be mean if they think that their cub is being threatened.  And isn't that sad?
     Anyway, I would come with my armor: my gradebook, copies of the signed progress reports that I sent every 2 weeks.  See, I learned that if I kept parents informed of grades, there really wasn't a reason to attack me.  Again, very, very sad. 
     As Emma grew older and we started talking about schools, folks would always ask, why aren't you going to homeschool?  Here are my reasons:
1.  I know my self.
      a. There is a reason why I chose secondary education.  My mom taught first and second grade.  She       was an AWESOME teacher and she loved it.  When I was in high school, I had the opportunity (one I think EVERY high schooler should have) of shadowing a professional.  I was an aid in her class and the kindergarten class.  I learned something very important:  I did not like it.  Listening to the kids sound out the words would have caused me to bang my head against the table.  So, no thank you.
     b.  I would not be able to concentrate unless I had a separate room to homeschool.  I would be distracted by household chores.
2.  I know my child.  She is just like me.  See 1.b for further reasoning. 
3.  I do think that this is part of parenting.  I want to protect my child and part of that is sending them out to learn in a safe environment.
     "Wait!  Schools aren't safe!  What are you talking about?  What about XYZ???"  You are right, not ALL school are safe.  But my home is.  And my child is coming home.  We talk about her day and right and wrong.  She needs to learn to make decisions and figure out where she stands. 
    Too often, I would have a middle schooler's parents say to me, "My child wouldn't do that."  Yes.  The child you know wouldn't.  But this child has a chance to figure out who they are and where they are going to draw his or her own moral line in the sand if you will.  School and going home to people who love you and will help you think about your decisions and reprimand you or praise you IS a safe place.  There are lessons that I absolutely cannot teach her.   But I can be there to pick her up if she falls. 
    And kids need to fall.  They need to fail as much as they need to win. 
4.  Children need to learn to respect other adults.  I hate the fact that I dreaded parent teacher night.  Parents would attack teachers.  I was accused to shaking a 5 foot 8, muscled 14 year old boy.  This kid was big.  I didn't and there was another teacher who backed me up.  That didn't stop the attack though. 
     When I taught, I always told my kids that I didn't care if they liked me or not.  But they would respect me if only for my position.  "Well, if you don't respect me . . .". WRONG!  I don't have to respect you (according to your connotation).  You have done nothing to earn it.  I have by reason of my education. That shocked quite a few kids when I explained it to them.  Oddly, I think that they appreciated the distinction.
    Emma and Sam will and are learning that there is such a thing as obligatory respect.  Hmmm, I wonder if a few adults need to learn this in light of this week.  (ZING!  Can't help myself.   I am SOOO tired of all the posts!  If you don't like it, get off your butt and on your knees or out the door and do something about it but STOP RUNNING YOUR MOUTH!)
    5. Jarrad and I have added another partner to our parenting.  Our parents, siblings and close friends are all partners.  Our church is our partner.  As cliche as it is, it does take a village to raise a child.  And you get to choose the village.  You also get to choose how you react to that village.  See reason #4. 
     This is a long post.  I could go into more depth but it would be even longer.  The point is, I AM teaching my child.  I am parenting my child.  And because of that, I can say, that our meeting went really well.  Emma is doing wonderfully in school.  She is going to be in the higher reading group and her teacher says that in the last 9 weeks, Emma has blown her away with how much she has grown. 
     Emma's teacher is awesome.  She is doing a great job but so are we. 

don't really have a title

     When I was pregnant with Sam, I prayed that God would provide a friend for him.  A best friend like Emma had with her BFF.  He answered that prayer and provided a friend for me as well.  Another example of how He knows what we need before we do. 
     So when my good friend asked me if things are getting easier, I didn't give the answer that I would to  anyone else.  I gave the messed up, complex answer that doesn't make any sense. I gave the honest answer. 
     Because when you have a good friend, they deserve your honesty.  You deserve your honesty.  We all need to have someone safe that we can go to for advice or solace or just a  chance to vent.  We all need someone who is willing to be honest with us.  Someone who thinks that we are worth the risk. 
     Emma will ask me who my best friend is.  I always answer the same - Daddy (hers, not mine).  She rolls her eyes.  The last time she asked, before I could answer, she said, "Don't say Daddy!"  What we are trying to tell her (and Sam) is that whomever you marry does need to be your best friend. 
     Jarrad thought I was worth the risk.
     So did others.  
     I heard once that as an adult if you can count your friends on one hand - good friends - you are wealthy. 
     I am a biljilonaire. 

have a new seat

The new chair - and the geek came free!

     My mom said that I sounded good today.  I feel good but part of me is feeling like we are in the eye of the storm.  It just seems that whenever we start to "feel" like things are going well, we get pulled back.  It is hard to remember not to focus on the "feelings" as opposed to the "knowings". 
     A lot of time, my days/feelings go by how Jarrad is.  He has been really upbeat, therefore, I am upbeat.  Therapy is going well.  He is getting more and more confident with transfers and doing things for himself.  I am listening to him on a conference call and I hear his confidence and authority.  He sounds like his "old" self. 

     I don't know how I am going to survive him working from home!

     And today, we got HIS chair!  Yeah! 
     It is better balanced and lighter.  The wheels are ergonomically correct and it fits his body.  That is a very happy paraplegic right there!
     Wanna hear a joke?  It is my own creation:

 2 paraplegics walk into a bar. 

The bartender throws the towel down and yells, "It's a miracle!".

  

Get it?  They walk into a bar!  HA! 
     Yeah, no one else thinks its funny either.  Well, maybe a little - but they are laughing AT me. 
     Here's the thing, I may have been a little punchy when I created that joke but if you don't laugh, you might cry and if you have the choice, laugh.  There is too much sadness sometimes and you have to take joy when you can.
     So even if this is the eye of the storm and we are going to be hit from the other side (Thank you Hurricane Sandy for this metaphor), I feel like we will be a little bit more prepared (read energized) because we took some time to just be happy and rest in that happiness. 
     Yeah us! 
     But don't you worry folks, I am polishing up the rest of my sit down routine and will have you "rolling" in the aisles soon!  
      
    

learn lessons

     Poor Sam.  Every day, we take Emma to school and every day, he wants to go too.  He seems to think that school is where he gets to play with other kids (I know, because he says so).  We could send him to preschool but quite frankly, he isn't ready.  He needs to learn quietness.  That doesn't involve sitting in front of a TV.
     Emma is learning to read.  I love hearing her sound out words.  I peeked in on her the other night and heard her trying.  She really loves school and I am so glad.
     Jarrad is learning to transfer without a board.  He is learning not be afraid.
     And me, well, God is smacking me over the head with this lesson;  I need to change my mind.
     I can't tell you the number of devotions or articles I have read or heard lately that talk about my thoughts and my mind.  Ready for a science lesson that (once again) proves God?  That sounds convoluted.  God proves science, some would say but we are a backwards people who like to have our theories prove the author as opposed to the other way around. 
    Ok, so, any pattern of thought or action creates a groove in our brain.  Usually, it is light and the brain "heals" from it.  But if the pattern or thought is repeated, it creates a groove (kind of like the ones on our carpet from Jarrad's chair).  Eventually, the groove becomes deeper and deeper so that it is a permanent part of our brain.  You can read about it here http://www.philipshapiro.com/art-habits.html if you are really interested.  I am not endorsing Dr. Shapiro; this just happened to be the first article I found and I was struck by The Buddha's quote.
     What is significant is that God told us from the beginning about this; even though at the time, the workings of the brain were not understood.  HE KNEW because He created the brain how the brain works.  HE KNEW that if we keep an action going, it becomes a very real part of us.  That is why we are told in Romans 12:2 to "not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will." NIV or as some other translations put it,

 Don't copy the behavior and customs of this world, 

but let God transform you into a new person by changing 

the way you think. Then you will learn to know God's will for you, 

which is good and pleasing and perfect.  NLT

or

Don't become like the people of this world. 

Instead, change the way you think. Then you will always be 

able to determine what God really wants-what is good, 

pleasing, and perfect. God's Word Translation 

    It is why children's books such as "The Little Engine that Could"  are such classics. It is why we have self - help books.  It is why we have affirmations. It is why we talk about "effective habits". 

     I have been bombarding myself with negative thoughts since I was an adolescent so much so that I never thought I would never be worth a second glance.  Then I met Jarrad.  He was unlike any guy I had ever met.  I had felt so unlovely growing up that it still is in my head that I am not attractive.  I am working to overcome that.  (It is not easy).  But even more so, I need to change the "This sucks" and "This is so hard" thoughts of this recent experience.  Because that is what will pull me and my family down.  It is what the world would do.  I think of Job. He was expected to behave a certain way.  Everyone did but he didn't do that.  Only God knew he wouldn't.  I guess that is because Job renewed his mind.  See how the OT connects to the NT?  I love seeing the interconnections of everything and that is only one example. 

     Yes, this sucks and it is hard - no one would dispute that but it could be worse.  It could be harder.  I need to find what is pleasing and perfect in this because it is God's plan.  This is meant to be pleasing and perfect and my mind needs to reflect that.  I can't even say "I think I can"  it has to be "I know I can".  

      That is going to be hard BUT I know I can do it (with a little help).

have another reason to eat cake

     This one has 6 - six!  candles on it.   Happy Birthday Emma!
     I told her this morning that 6 years ago today, she wasn't born yet.  She thought I was teasing and saying that she didn't exist.  The past and future are still pretty abstract concepts for her.
     6 years ago at this time (3 pm with still another 7 hours to go) - she still wasn't born!  I think I was asking for an epidural at this point.  (After 6 hours of pitocin - patting myself on the back  here!  NOTE - pitocin is horrible stuff!)
     Happy Birthday, Beautiful Girl.  You make me smile.  You make me so glad.  You made me a mom.

Newborn - onesie asks "Does this diaper make my butt look big?"

Questions for the Birthday Girl

1.  Who is your best friend?       Christina

1st birthday

2.  What is your favorite thing to do? Play

3.  What is your favorite color? Pink

4.  What is your favorite toy?  My new Little Pony Castle toy with Shining Armor and Princess Cadence

5.  What do you want to be when you grow up?  An author

6.  What makes you happy?  When Christina comes over

7.  What makes you sad?  When Sammy punches me and doesn't share

8.  What is your favorite show to watch?  My Little Pony

3rd birthday

9.  What is your favorite book?  My Little Pony  (do we detect a theme?)

10.  What do you love to learn about?  The letters of the alphabet

11.  What is the best part of your birthday?  When I open presents

12.  What is your favorite treat?  Chocolate cake

13.  What do you think about before you fall asleep?  Lukas  (hmmm, should I be worried?)

14.  If you could meet someone famous, who would it be?  Santa

15.  What is your favorite (non treat) food?  Apple

16.  What is your favorite thing to do outside?  Play with Sam

6th birthday

17.  What is your favorite outfit?  My princess dress

18.  What is your favorite holiday?  Halloween

19.  What is your favorite thing to do with Mommy?  Play with Ponies

20.  What is your favorite thing to do with Daddy?  Play cars

21.  What is your favorite thing about Sam?  That he is good (even when he is punching you?)

start our firsts

     I think I scared my folks this weekend.  This was the first time that we had guests down and Jarrad wasn't in the hospital.  I was not leaving instructions and dashing off someplace to meet with doctors or to be with him. 
      I kind of didn't know what to do with myself. 
      It was also hard because those memories that I was trying not to remember were really close to the surface. 
     I cried. 
     I think I was a mess. 
     Sorry Mom.  Sorry Dad.  Really, we are doing ok.  I would even venture good most of the time.  We laugh and play and fight. 
     I know you are going to worry anyway, but don't worry more than usual.  It will get better. 
     Thanks for all your work this weekend.  It made life a whole lot easier. 
     My dad put up an exterior light which will make coming up the ramp easier.  He also put in a threshold ramp so Jarrad doesn't need me to boost him 2 inches to get outside.  Mom made a pie (it was delicious - I ate half.  Really.) and took Emma and I shopping for Emma's Christmas dress.  If you have never been shopping with a 5 almost 6 year old girl who gets to pick out all the sparkly dresses she wants and then gets to twirl and pose, well, you should.  It is a pick me up. 
     They also took the kids on a picnic so Jarrad and I could stream one of the movies that we missed this summer.  We relaxed and cuddled - better than going to a movie theater.   
     It is just hard to have memories.  It is harder to see them reflected in Jarrad's eyes.  See, what would usually happen, is that Jarrad and Dad would work on a project.  Jarrad says he always learns so much from my dad.  It was hard for me to see Jarrad and know he was thinking that he wished that he could help.  I know that he feels useless sometimes because he has said so whenever someone comes over to help.  Usually, he would be in there doing it. He was able to fix my mom's computer and I think that helped some. 
     We are ok.  We are just figuring it all out.  I think that when we figure it out, it will be better.  In the meantime, we just have to go through a whole bunch of firsts.  I really can't wait till we get to the seconds. 

celebrate a birthday - almost 4 decades!

Jarrad's 2nd birthday present

     No, not me!  For the next month and a half, Jarrad is 3 years older than I am.

And a 5 year present

     Happy 38th birthday, Sweetheart.
     This birthday is so bittersweet.  And not just because you are staring down the darkside of 30 (and no, I don't tire of cracking jokes about that!).  Emma just said, "Daddy!  Tomorrow is your birthday!" With only the enthusiasm that comes from a child that is loved and cared for.  She didn't see that your smile didn't quiet reach your eyes.  Someday, maybe, she will understand that growing older isn't necessarily a good thing. 
     I know that we have been challenged and will face more.  Most of our dreams are dead.  Some have been changed.  Growing older has just acquired more

As a teenager - ok, not birthday

challenges than before.  But I still look forward to
growing old with you.  
     I love you.  From the first date, you proved that you were unlike any other guy I had ever met.  You listened to me and thought that what I had to say had merit.  You laughed at my jokes.  You challenged my intellect.  You challenged my world view and made me define my beliefs.  You gave me courage to be myself; to be my better self.  

sharing a birthday with our girl

     You are a gift.

This year  (2009) was a U2 concert

     Happy birthday, my heart. 

and how they are

     I just got off the phone with my sister.  She asked me how I was doing.  Fine. I said.  She wants to know if I am getting out; if life is getting back to "normal".  Yes and no.  The answer I give confused even me. 
     We have a friend who is a massage therapist.  Used to be, Jarrad would go see her.  Now, she comes to see him.  She came to the hospital to be with me - us -  when IT happened.  She is a good friend.  When she came to work on Jarrad, she asked me how my back was.  Fine, I say.  She shoots me a look.  I know that look.  I am in the process of perfecting my own towards my kids.  It is the "Really, are you sure you want to go with that story?" look. 
     I am fine.  Ok.  Good.

     I can walk.  I can hop into the car and drive to where ever without worrying about meds, cathing, a 30 lb wheel chair that I have to transfer in and out of.  Spasms don't throw me. I can actually drive the car as opposed to being dependent on someone else to drive it.
     So I am fine.

     Saturday, we all loaded up and went to a pumpkin farm.  Jarrad sat in the sun and I took the kids inside the event.  A corn bin, a hay maze, followed by a hay ride and then picking out pumpkins.  Last year, we went and Jarrad walked in.  He watched one kid and I watched the other.  This year, I depended on a good friend for help.  Last year, he took each kid and scoured the field for perfect pumpkins.  This year, I carried 2 out to the car, with Sam saying "cawry me, cawry me" the whole way.
    I see what was, what I think should be, and what is.  Last year, what I had assumed this year would be like, and what this year is.  This triple vision has brought me to my knees sometimes.  I deal with it by trying not to think about last year - pushing it away, not looking at pictures.  Ignoring the past.  That is not good because I can't remember good times without hurt.  Even now, pictures pop into my head as I write this and I sit here crying.  I try not to think about plans we had made - the what I assumed would be.  Like this weekend, we should be packing to go to Great Wolf Lodge.  We had decided that instead of gifts, we would do things for birthdays (and a small gift - come on, what is a birthday without one?),  Emma wanted to go to GWL for her birthday.  That is not happening and it hurts.

    It hurts when I hear Emma say to Sam that we can't go this year but when Daddy's legs heal, we can go next year.  It hurts when I think that Sam will never remember Daddy carrying him and the inner tube up the flight of steps to go down the large water slide.  It hurts when I think that Jarrad can't go down the large slide again.  Thinking, remembering, just hurts.
     I used to scrapbook.  I think that this will be the lost year. 
     I have never understood living in the now before.  It is this moment where there is no past and no future to think about.  I make small plans - like instead of GWL, I am taking Emma and her BFF out to dinner and then we are going to Target or Walmart to create a wish list for Christmas.  I am going to let them use scanners!  They are going to have a ball!  And it is cheap!  And has the added bonus of being able to send to grandparents.  (Disclaimer - got the idea from a friend - as most of my really good ideas come from this absolutely fabulous group of friends that I have.)
    This is why my answer to my sister is confusing.  On a given moment, if my vision is narrowed, I will be fine.  I went to book club this past weekend.  I bought a new purse.  I don't know what to do with myself when Jarrad isn't here so I feel a little lost.  I get about 6 hours of  sleep every night.  Friends come over on Sundays for food and fellowship.  I take Emma to dance on Mondays and spend the 45 minutes waiting reading a book and enjoying a treat from whatever fast food establishment I choose (usually McD's). I try not to think to much because then I am not so fine.

are almost normal

     Jarrad is of too work - and I am not taking him.  Emma is in school.  Sam is watching cartoons and I am here.  It almost feels normal. 

own hubris

    When I went to college, I was going from a small (20 in the graduating class) independent study based private school to a lecture, classroom setting.  I thought I would be smart and go to a Bible college my first year.  That way I could learn how to learn in such an environment with content that was safe, familiar.  It was a good idea.  And I learned a lot.  Such as how incredibly sheltered and naive I was.  Now, with my own children, I want to create that for them.  There was an innocence there that I treasure now.
     But I digress.
     I took an English 300 level class.  As a freshmen.  As a freshman, I was astonished at my own boldness.  Taking a junior/senior level class!  Gasp! (again, see the naivete?).  That class was one of the best classes ever and it justified my reasoning for "THE PLAN".   The point?  The final exam was to take a selection of works that we read and write an essay on a common theme.  Simple enough.  Unless, you were overwhelmed with a new type of learning and everything else.  I didn't really "get it".  But I do remember the test and I learned a lot in that class.  (again, get to the point, PLEASE!)  My theme was "hubris" which is excessive pride or arrogance to the point of losing contact with reality.   
     Why am I talking about this?  Because I feel that I am in danger of it.  I know that folks read my blog and I like it.  It makes me feel good when I hear that someone reads it.  People I don't even know.  I have always wanted to be a writer.  I have always wanted that fame - a quiet kind of fame.  Who really looks at the author's picture on the book jacket?  But I have always wanted to say (with a bit of pride) I wrote that.  Blogging fulfills that desire for me as I can publish.  But it is also a record of my feelings and thoughts - a diary.
     I am glad that people I don't know are reading this.  I am glad that for some, I put into words what they feel.  I hope it helps.  It helps me.  I just need to be aware of my own shortcomings (arrogance - just ask my siblings!).  So, I don't post on facebook what I write (well, sometimes, if I did something I want to show off!) and I don't always publish what I write (somethings should not be sent out into the world).  But if you like something or it touches you, please let me know.  This world, for all of its technology and crap, is a very lonely place and sometimes, we all want to know that what we are going through isn't the first time even if it is unique to us. Remember that first heart break?  Yeah,  we have all been there. 
     So I will try to write from the heart and as it is cathartic for me, I hope it makes you feel not so alone. 

                                

and autumn

    It is fall here.  I love fall.  I love the (well, up north it would be but here it is still warm so I guess I love the idea of) cooler weather.  I love the colors.  I love the smells.  Ripening fruits and vegetables, glistening  I love the magic of the leaves falling and how they swirl.  I always imagine that if you could step through the swirl, you would be taken somewhere wonderful.  As a kid, I would try to catch a falling leaf.  I thought if you caught one, you would have good luck.
     It would be ironic if Jarrad fell during the fall and not just because of the play on words.  Fall is usually associated with dying things.  Perhaps we shouldn't think of it as dying but rather as coming to rest.  Followed by sleep.  Ah, got to love euphemisms.  We try so hard to "gentle" things.  Sleep as opposed to death.  We call it seasons of life.  How often is autumn associated with old age or death.  I never felt old before this year.  Now, I think that 35 is younger than I feel.

"God is our refuge and strength, always ready to help in times of trouble. So we will not fear when earthquakes come and the mountains crumble into the sea. Let the oceans roar and foam. Let the mountains tremble as the waters surge!" Psalm 46:1-3 

     This was the header verse for my devotion this morning.  Funny how sometimes what is supposed to comfort you only seems to taunt you.  Where is my refuge?  Because I could sure use one.

                                                                *******

Yes, I enjoy the irony of the above with this blog.

 

 

 

     This is what I wrote several hours ago.  Since then, I have taken care of my kids and husband, cleaned the kitchen and done a couple of loads of laundry.  And watched a comedy.  The "surging of waters" has faded somewhat.  Surging, crashing, roaring.  That is how it feels sometimes.  You can't catch your breath.  I had a migraine earlier this afternoon.  I was able to nap for about 90 minutes and that was wonderful but Jarrad wasn't feeling good either.  I needed to get up and take care of him.  He felt bad about it and kept sending me to lay down and I felt bad that I couldn't stay up so that he could lay down.  If you ever had a migraine, you will understand that nothing stops the jackhammers in your head except for time.  Then I felt bad that I can't even get sick.  So where is or rather, was a refuge for me?  My pity party involved wondering when I get to be taken care of.
     You know what the worst part of this is? That Jarrad went to work this week.  And yes, 4 40 minutes drives really are crappy but he was feeling good and so I was feeling good.  In fact, I was feeling like we were going to make it.  That everything might be ok.  And then he calls because he isn't feeling good. And the headache I had since I got up escalated.  And I felt like I can't breathe.
     Perhaps it is good that we are at this point in our lives with Jarrad's paraplegia.  It is a time of sleep, quiet, death if you will, but this is also a time to plant bulbs so that in the spring, you see beauty from a dried up bulb. My faith feels as small as a mustard seed" (Matt. 17:20) right now.  I know that much can come from seeds even smaller. 

and their new "baby"

     I usually connect new experiences to old.  This is how I understand "new" ideas.  At one point, somewhere, I said that paraplegia is like a new baby.  It is.  We are getting used to the "new us".  But unlike a new baby, this sucks. (well, ok, babies suck but in the good "I am getting nutrition" way and not the "this is very hard and we hate all the changes we have to make" way which is the way I mean when I say this sucks).   So here is Paraplegia 101 for everyone.
     1.  We are on a schedule.  Like having kids, everything is on a schedule.  I mean EVERYTHING!   So if we are out, we kind of need to be home no later than 8 pm.  Ideally, we are home at 7.  I have to be home because even though Jarrad is doing great, he still needs assistance with a few things that have to be taken care of.
     2.  Speaking of schedules, let's talk weight shifts.  Sit up in your chair and really feel where your bottom connects to the chair.  When we get uncomfortable, our body tells our head to move because it needs to change position.  Jarrad no longer has that connection with his lower body.  Instead, he has a timer that goes off and he has to "shift" his body so that his bones don't wear a hole through his skin.  And yes, that is what would happen.  Now, lean your chest as far forward to your knees as you can.  Feel how the weight shifts off your tail bone?  That is what Jarrad has to do about every hour.  This prevents the aforementioned hole from occurring.  When he gets stronger, he will be able to push up on his chair and hold his body up but for now, he leans forward for 2 minutes.  DO NOT be alarmed if this happens.  He has not fainted.  It is simply a weight shift.  He can keep talking and no one needs to weight on him to finish.
     I did tell him not to do this in church, however, as I think it would alarms all the parishioners. Instead, he pushes up on his chair and holds it several times for as long as he can  until he reaches 2 minutes.  The first time he did it, I swear a couple of folks in the choir were getting ready to sing Hallelujah as it does look like he is getting ready to get out and walk.  Again, just a weight shift.
    3.  Because everything is on a schedule, sleep is a little sporadic right now.  I am assured that we will adjust.  I hold on to that.  But hey, sleep with kids is always iffy.  
    4.  Spasms - Sometimes, Jarrad's body will shake or he will jerk back in his chair.  This is a spasm.  It is an effort for his lower body to connect with his brain.  The signals travel  but are not received and react because there is no outlet.  It is a bit alarming and can happen at any time.  It also hurts him.  Do not be alarmed.  Just be aware.  
    5.  Don't help unless asked (or unless someone is looking around desperately or cries for help occur).    PLEASE don't just come up and start pushing someone in a chair.  It throws them off.  And while offers of help to get in and out of the car are appreciated, we have a rhythm and unless you know what you are doing, you would just throw us off.   Help by moving out of the way or opening a door as we are coming up.
     6.  Treat us the way you always have.  If you made jokes at our expense, please don't stop.  We certainly won't stop making fun of you!  We are the same folks we always have been.  Don't change something that you do simply because we can't.  If you wrestle with the kids, it isn't going to hurt our feelings if you wrestle with ours just like you have always done.  Jarrad can give them rides.  Yeah, you may have to come to our house more often than we come to yours but less cleaning for you, right?  And if you don't mind helping us bump up a few steps, we can come to yours too. If you don't know, just ask.  There is nothing that you could ask that would be weird or insensitive.
      Some things will change.  Maybe we won't always have to be home around 7 every night.  And Jarrad will learn to drive and how to adapt his brewery.  He will learn to get on the floor and how to bump up steps.  Just as we figure something out, it will change because he has.  And maybe, this whole thing will be less "sucky".
    Just do me a favor - no big crises, ok?  Just for another 6- 12 months?