The Croods

    As May approaches, I find myself thinking of where we were last year and how we had no clue on how drastically our life would change.  I try not to think about it too much - I am not ready-still can't look at pictures of "before" . . .
     I have been thinking about last fall though.
     I think that most people who go through something as permanently life changing as this would agree  (at least I hope that they would because otherwise I am really alone) when you are home and all the adrenaline wears off, people don't drop by every day and things start to get into a routine, you hit a low.   You are alone and you are tired. VERY tired.  Everything is incredibly hard. This is when you start to think.  I was there last September and probably through the end of the year.   You  feel the sadness about the "death" of all your hopes and dreams and you don't have new ones to replace them or even the energy to try to replace them.  You have to force yourself to be around people because you know you need to but it is hard and it hurts.
     Hopeless. 
     Tired.
     Sad.
     Going out was not fun - Jarrad got tired easily.  The kids were rammy.  And I was just tired and overwhelmed by the amount of stuff to do at home and out of it.  We were all tired of riding in the van but there are doctors and groceries and school . . .
     That is why a day that is close to what your dreams were is so important.
     Saturday, we took the kids to see The Croods. 
     We didn't tell them that was what we were going to do.  Just that we were going to go to Wal-Mart (we did).  When we pulled up to the movie theater and Sam said, (excitedly) "THAT (place) makes me scream!"  He was so funny - he kept waving at the ticket lady and making excited noises as he jumped up and down and HAD to be the one to get the tickets!
    Everyone was laughing at him.
    I kept looking over at the kids during the movie.  They were enjoying themselves so much.  And then I would look over at my husband; he would turn to look at me.
    And we would smile.
    And I felt good.
    It was a good movie.  The kids loved it.  There was enough for adults to laugh too  - I really admire writing like that.  We had a good time doing something that we had planned to do "before".
    We will probably never be able to do all that we planned, that we dreamed about but the dreams and plans are coming slowly and I am starting to feel like hope isn't just a tease. 

Wheels

       So last month we went to this place that does accessible vehicles.   We were so excited to start this process of Jarrad being able to drive!  We had already weathered some disappointment because we knew that we were going to have to get a van for him.  We were hoping to be able to get a lower costing sedan but due to his heterotopic ossification, he needed to have a ramp to roll up on.  Hence - another van.  2 vans.  It just seemed like another blow to our independence.
    So we arrive at this place.  We means - the engineer from Voc. Rehab, the counselor from Voc.  Rehab.  The driving therapist (DT) and her therapy student.  The DT  made a comment that she hoped that Jarrad would be able to get up the ramp.  All I could think of was "Why not? I mean the ramp at the back of our house is steeper than this thing and this is only 3 feet long; not 12 feet.  Easy peasy."
     Yes, he could have pushed up the ramp no problem IF the ramp were wide enough.  The ramp width 29+ inches.  Jarrad's wheel width?  30.
   Now, Jarrad's wheels are at 27 inches at the top.  His wheels are canted.  That means that his wheels aren't straight up and down.  They are at a slight angle.  Very slight.  Why the angle?  A better, easier push.  Less effort on his part.  Now that his arms are his legs, that is important.  He has an Invacare Top End Reveal Wheelchair.  Starting price: 1,800.

Look at the wheels and you will see what I mean

And that doesn't include the cushion.  Just like a car, wheelchairs come with options. Just like a car, options cost extra.  Some insurances have a "cap" on what they will pay for like 1,500.  I am not sure what our cap was and quite frankly, don't care.  I told Jarrad to get what he wanted as this was essential to his health and happiness.  Now, he got a standard color and picked one of the 2 standard arms - standard everything pretty much till it came to the hand grips (or what I call, push wheels).  See the smaller "wheel"?  That is what paras use to push the chair.  He got a "cover" that connects the 2 "wheels"  that again is supposed to help with pushing and with his carpel tunnel.
     Now I will get to the point.  You would think that this ramp to the van would come wider - it definitely could - there was space for it.  Jarrad has a standard size chair.  Apparently, for most folks the push wheel goes on the outside of the ramp but because of his covers, that wasn't going to happen.  And, we are told, that the ramps don't come wider.
     Really? 
     Crap.  
     So the DT suggests taking the cant out or taking off the covers.  I am getting frustrated because these are things that make life easier on him.  THEN she suggests that maybe we would be better off with a power chair.
     WHATTTTTT????
    That was just crushing to us.  It just felt like a step backwards that we would need a power chair.  We know that sometime in the future it will probably be something we have to consider.  But not right now.
     It was just a bad day for us.  We were very discouraged.  We did have some things to consider and Jarrad started doing some research and found out - that there ARE vans with wider ramps.  Really, why do folks say things like "No, this is your only option."  Are they trying to discourage us?  Or are they just clueless?  I am going with clueless because last week Jarrad was talking to our ex-wheelchair rep.  Ex because he was laid off when his company was bought by a larger one - still, he is in the modification business and we see him regularly and are doing business with his new company.
     Anyway, Jarrad was telling him about our adventures in minivan shopping when he looks at Jarrad's chair and says, "If we got you the other (standard) arm, the wheels could come in on the axle 2 inches.
     WHATTTTT????
     You mean, we could keep the cant and the covers, AND make his chair smaller so he has more flexibility in manuevering?
    Why, yes.  Yes, we can. 
     Since then, I have had time to think about this and have come to the conclusion that there is so much information out there that I think therapists and other health professionals can't know everything.  Other things have priority (such as skin integrity ie pressure sores, strength training and general "this is how you do this" kind of stuff, overall health issues . . . ).  That is why it is important to do your own research and see other practices because you learn different techniques. 
    And never lose hope because someone out there has gone through something very similar and there is a solution to it. 

finding something

      Do you ever hear a sermon or read a devotional and think - there was nothing there for me.  The answer is yes.  We have all done that and if you are saying no, not me - well, all I can say is um hmm.  I usually read Proverbs 31 Ministries devotional.  I like the fact that it is written by women and focuses on the struggles that they go through.  I have to admit, that sometimes the devotional doesn't seem to make a connection with me but I have been praying that I would connect on some level with whatever it is that they are talking about.
     Today's devotion was on John 4.  The story of the Samaritan woman.  It was all stuff I heard before Jesus was reaching out to her. . . knew all about her . . .  living water misunderstanding . . . yeah, ok but I plowed through thinking that I would learn something more.  Now, before you think poorly of me, let me tell you something.
    I went to a Christian school for 13 years.  I cannot tell you the number of verses that I have memorized (and forgotten).  Then I went to Bible college for a year.  I have heard popular passages expounded upon again and again.  So it is rare that for a popular passage such as this to have something new introduced.  Wow.  I sound so conceited.  Keep in mind, I said popular passages.  And I did say I learn new things; like today.
       Today, I learned to focus not on the narration but rather on the narrator. In literature, there are 2 kinds of narration - 1st and 3rd person.  1st person means that the narrator is the main character in the story.  They tell it from their point of view.  3rd person means that the narrator is not the main character (ie the Gospels are written from 3rd person point of view).  Sometimes, in 3rd person, the narrator is a minor character but sometimes the narrator is omniscient meaning not a character in the story but rather someone with a "god" like view of the story (ie they see everything that happens).  It is easy for me to take that approach with the Gospels.  It is easy to forget that the gospels are told by a minor character; one who is a part of the story.  
       While we may think that Jesus was having a private conversation with this woman, he wasn't.  John was there.  He apparently remained behind to keep Jesus company while his disciples went into town.  He witnessed everything.  Ok, not a big deal.  Until you consider  this - the men who biographied the life of Christ in the Gospels were witness to more miracles and sermons and parables than they recorded.  They generalize the amount by saying things like he "cast out demons" and "healed the sick and the lame" and "preaching and teaching the multitudes".
     So what was it about this one encounter that made John want to record it?  In 3 years, Jesus' message hadn't changed and I am sure that John heard some version of that message several times.  So what is so striking about Jesus talking to a Samaritan and a woman at that?
     I don't know.  I do know that sometimes we hear the same thing over and over but sometimes the way the message is presented has the impact.  It can turn us off or make us sit up and pay attention.  Maybe that is what happened to John. I can tell you one thing, whenever I read the Gospels from now on, I am no longer going to think that I am looking in at the story.  I am going to keep in mind that the narrator was in the story; not just telling it. 
     I guess that is the lesson I needed to learn. 


(It usually takes me a week to write a blog so this occurred last week.  Sorry)

On Tuesday.

    I read.  A lot.  I have 2 Kindles and love them.   Not only for the free books but because I can get a new book at 10 at night from the comfort of my own bedroom.  Love it!   I also taught English so I have a pretty good idea of what makes a story a story.  Want to know a basic?
      Conflict.
      Yep, something that inserts conflict into the life a of character and how he/she deals with it is essential to a story.
     Today, my life was not a story.  No conflict.  Busy but dull. No drama, no conflict, no story.
      6:45 - wake up and (usually) pray for 10 minutes.  I pray for the healing of Jarrad's body - complete healing.  I imagine that his body is healing like a seed that one plants in the ground.  I pray for patience with my children.  I pray for guidance.  I pray that I am not tired.  I never say "amen".  I was asked once why I don't and it is because I don't think that one should end prayer but continue with it all day.  So at 6:55, I get up and get Emma ready for school.
      At 7:30, head out the door with Emma and take her to school.  Back home by 7:45.  Get Sam breakfast and check on Jarrad.  He had outpatient procedure yesterday so he is still pretty wiped.  I let him sleep.  Eat my own breakfast, check out the blogs I follow, do my devotion, some minor cleaning, a load of laundry and shower.  Get Sam ready for swim lessons.
      9:00, Jarrad is still beat so I tell him we are leaving in 20 minutes and get him water and his meds.  He goes back to sleep.
      9:20, Sam and I head out the door for his 10 swim lesson.  Today, he doesn't love the water and doesn't want to do ANYTHING the instructor tells him to do.  Oh well.  I notice that they have a lift.  That is good as Jarrad wants to swim.  Cool. 
      11:00, we leave for the pool.  My cereal is LONG gone so we stop at Chick-Fillet and get "criss cross" fries.  Home by 11:45 and eat lunch.  I am so very tired.  Jarrad is up and after lunch I lay down for an hour.
     2:20, we get in the car to get Emma because Jarrad and I have an eye doctor appointment.  I have not had my eyes checked in 2 years.  He had his eyes checked in the hospital but I want to make sure every thing is still ok.  This is a new to us and they are really nice.  We are good - I was afraid that my eyes had gotten a lot worse - nope.
     We are out by 5:45.  The kids were good BUT HUNGRY!  Jarrad says we could go to the Olive Garden for dinner - yeah!  He stresses that it is a gift for me.  It really is because he doesn't care for the Olive Garden.  I love the salad and breadsticks.  I need to remember that that is really all I need to eat when I go there.  We now have enough food for tomorrow night too.  The server was bringing me Cokes before I noticed they were empty so I am no longer tired. 
    Now it is 8:30.  I need to fold laundry and do dishes.  Make lunch for tomorrow.  Do assorted cleaning.  And go to bed at 10 ish (if I don't get a book to read!).
    No conflict.  No drama.
    No story.  Just another day. 

Ahmazing!

    Remember this?   That turned into this?  

 

     Well, it now looks like this.

     In the space of 2 hours and 7 adults, 2 wheelbarrows and a dozen assorted shovels and rakes, I now have the dirt where it should be.  Actually, I had more than enough dirt for what I needed and we spread it out, well, just about everywhere.
     THANK YOU! THANK YOU! THANK YOU to everyone who helped!  You are all

AH . . . 

(wait for it)

 MAZING! 

friends and neighbors

    Last year, we needed a ramp.  The Baptist Church has a group called The Baptist Men that will build ramps for those who need it.  I am not quite sure how they found out about us but I have a suspicion that they found out through many sources.  So we had a ramp built and now Jarrad can get into the house.  As far as ramps go, it is quite beautiful.  When you have a ramp, you start to see them everywhere so I feel like I can say it is very pretty with some confidence.  But we needed a way to get to the ramp since it was at the back of the house and going across uneven grass/dirt in a wheel chair is not easy or fun.
    Again, yeah for having friends!  A friend got us a deal on a concrete sidewalk that goes around the house to said ramp.  Again, looks very nice.  But the friend told us that we should probably get some dirt to make sure the sidewalk STAYS nice ie doesn't crack, as it is on a slope.  At the time, I was still in survival mode and pushed that chore off till spring.
    Guess what - it is spring.  Well, ok, not yet but it is time to start thinking of planting grass seed.  So we ordered dirt and hey, we need mulch so we ordered that too.  Me, I thought that they could just dump it on the grass.  Dirt on the side of the driveway where the majority of it needed to go and the mulch on the other side of the drive way.  Drive way is then clear and I would move both piles around at my leisure.

    I am so smart that way! 

    "Ma'am, If I try to dump this there, I will probably crack your driveway."

     I am so dumb!

      Great.  So now, 2 big piles sit on my driveway.  And it is going to rain this week. Double great.   Time to get to work.  I borrow a wheelbarrow from a friend and get started on clearing the dirt.  The kids are thrilled and are "helping".  I know I should take the time to let them "help" but really, somethings are just faster when I do it. Fun for them sometimes equals frustration for Mommy.  
    I get up the next morning and start to work on the piles some more.  I am at it for a couple of hours when a friend walks by with her neighbor.  They head home and come back with shovels to help.  Another neighbor sees my good friend walking with shovels and sends her son to come and help. IN THE RAIN!  They decided that I needed a path to the front door and worked until there was a big one. I am so very grateful that they refused to take no for an answer. 
    I am so grateful for the help.  I am sure that the 20 something young man did not want to be out in the spitting rain helping a lady he didn't know but he cheerfully did it because his mom told him to.  And I didn't know my friend's neighbor but she pitched in anyway and when I tried to tell them it was "good enough", insisted on the path being wide enough so we could access the front door. It would have taken me a week to get this much done.  I still have a lot to do (obviously) but it is not so urgent at this point.  And I am SOOO glad that I had the help. 
    Really, I tried to get them to leave 3 times but they stayed.  I guess I feel that we are out of crisis mode and I need to do things by myself.  I kind of feel that everyone has their own homes and families so I shouldn't "bother" them if we need help.
     I think that I am wrong (yes, I said I was wrong - stop partying!).   If one of my friends needs help, I give it so why am I not allowing them the same option?  I need to get over myself.
    SO:  Today's lesson, boys and girls, is this: if you are willing to help your friends, then give them the same option to help you.  And if you have a real friendship, saying no is ok because we all know about families and "stuff" and understand what that means.
    There will be a test on Tuesday.

this time, it is us.

 

    If I seem to have a lot of stories about Sam it is because he is 3.  At 3, almost every (other) action or word is amusing or exasperating because they have yet to understand irony.  Or modesty.  Or discretion.  I had a lot of amusing anecdotes when Emma was 3. . .  So when I have a story to share about her, I will make a point to do so.  Otherwise, one might suspect favoritism.  No, she is (usually) just a sweet girl.
    Sweet, smart, and so darn . . . creative.
    This  past Saturday, we had dance pictures.  I went to parent's night this past Monday where the dance teacher said, "If it can happen between now and pictures, it will.  Wrap them in a bubble to keep them safe till then."  Oh, I should have listened!
    But then, when they are in their room and (supposedly) asleep, you don't expect disaster to strike.
    It was a dark and ordinary Tuesday night.  The kids were in bed.  Asleep?  They were supposed to be.  I was just getting ready to cut Jarrad's hair when we heard a blood curdling cry - "It hurts!  My nose hurts so much!"  And out comes Emma with blood dripping down her face. Somehow, she managed to acquire a gash across her nose.  We cleaned it up and I was starting to clean the rest of her face when I noticed a gash across the crease of her eyelid.  At first, I thought it was just smeared blood but no, it was another cut.

the morning after - so these pictures don't show how bad it got.

    "Jarrad!"  I called (he was getting supplies), "She cut her eyelid!"  I am panicking just a bit because it is the eye and that could be bad and I really, don't want to go to the emergency room AGAIN!  Been there and done that enough in the past 9 months. And I would probably have social services coming to investigate me. . . No, really, the last time Jarrad was in the hospital, they asked him 3 times if he felt "safe in his home environment".  It kind of makes me really sad when I think about it -  I just can't keep my family safe. 
    So, I yell at him that she cut her eye with a note of panic that has many levels to it when my poor tired girl, who is already in pain and crying, hears this and ramps up even louder saying, "I didn't cut myself!  I didn't have scissors!  I didn't! Mommy, I didn't cut myself!  I didn't have scissors!"
    It was just the note of levity to calm me down.
    To back up to those 3 year old days.  Not once, not twice, but 3 times this girl cut her hair.  The second time, she cut her hair, her screen, her sheets, 2 of her dresses, her doll's hair, her doll's clothes: let's just say she had a cutting party.  The 3rd time, we had spent 9 months growing out her bangs AT HER REQUEST when she decided she was tired of her hair in her eyes and cut bangs (she did a pretty good job but it could have been so bad).  Needless to point out it  has been  ingrained into her what would happen if she EVER did it again.   Hence her hysterical insistence that she didn't have scissors and hadn't "cut" herself with them.  
     Back to the cut on the eye, I wanted to get a second opinion before I packed my child up to head to the ER.  I tried to call my parents.  Didn't pick up.  Thought - wait!  I know a pediatric nurse!  Tried to call my brother in law.  No pick up!  Really people?  It is the EYE!  (I am starting to get a bit upset again) Scroll to find the number for the other nurse in the family - WHY is it not in my phone????  I know it should be there!!!!  Call my brother for his wife's phone number.  Only to realize that for some reason, I had put it under his name and not hers. ARGH! Text a picture and explain what is going on.  She says we should be fine going to pediatrician tomorrow.
    Poor Emma. The last time she went to the doctor, it took 3 adults to hold her down for her shot.  Going to the doctor is not fun for her.
    Still, we had to go just so that they could check her out, I told her. They "glued" the cut on her eyelid and said that everything looked fine.  No broken nose.  No damage to the eye.  Shouldn't scar.
    But we still have dance pictures on Saturday.  I think it is a rite of childhood to be one of "those" kids.  This time, it is us.
   Oh, want to know how she hurt herself when she was supposed to be sleeping?  Yoga.  Yep.  Crow to be specific.  If you are unfamiliar with yoga, crow looks like that -  Where did she learn this pose?  From when I took her to yoga one night and she loved it! 
    Emma calls it balancing on her nose and she was trying to do it on her bed when she fell off her bed and ended up with a black eye - that looked SPECTACULAR just in time for pictures.