February 2019

Since we are on our 8th snow day since Christmas (such CRAZY weather these past few weeks!), I thought I would use this extra day off to write an update on Ren.

WHEELCHAIR

Back in September, she FINALLY got her new wheelchair!  We had started the process last January, so it was a long and frustrating process, as her other wheelchair was way too small and practically falling apart, including brakes that didn’t really work.  Her new wheelchair is bigger, making her nice and tall, able to reach a lot more.  She loves it, and so do we, though the downside is that it makes it a lot more difficult to get into our vehicle!  It’s heavier, so harder on our backs, and bigger, so a REALLY tight squeeze in the back of our minivan.

Getting fitted in her new wheelchair

 

 

SCHOOL

Ren is in 5th grade, with her teacher being….me!  I am so glad I requested to have her in my class.  I have gained such great insight and perspective on her in so many ways, academically and socially.  I am able to directly see what supports she needs now, and in the future.  I am able to see her strengths, and the areas she needs improvement in, or appropriate accommodations.  And,  I am able to see firsthand how her classmates treat her with such kindness, patience, and helpfulness.  She loves school, everything about it.  And, ironically enough, her favorite subject is PE, both PE class, and her 1:1 adaptive class with the teacher.  She has always loved being active!

Playing on the school playground

 

FRIENDS

She has one or two classmates whom I would venture to say they may be true friends, and not just nice peers.  One of these girls in particular is so, so, so kind and good to her.  She is a true blessing to Ren.  My heart warms every time I see them interact.  She sits by Ren when we are up on the floor to make sure she has a partner to turn and talk to, to show her where we are and help her find the answer to a question I have asked.  She gets her Chromebook for her each time we have computer time.  She walks with her during morning recess, instead of going outside to play with all of her many other friends.  She helps her get ready for winter recess and also take off all of her gear when she comes in (boots, snowpants, etc!).  I usually try to be there to help with this, as I don’t think it fair that she miss out on recess time to help, but sometimes she beats me to it!  Oh, and she invited her to her birthday party last summer….at the beach!

The BEACH!  Most people don’t understand why that is such a big deal.  This is a girl in a wheelchair.  A wheelchair!  Have you ever tried to move a wheelchair on a beach, in the sand?!  This friend and her parents were willing to take Ren without me, to the beach, all day, with a bunch of girls.  They had to transport her wheelchair in their vehicle, lift her into and out of the vehicle, push her through the sand, help her in every way that they are not used to having to deal with, including helping with and reminding her of when to use the bathroom to cath.  It was not out of pity, it was because they WANTED to have her, and they made it work.  I get teary-eyed thinking about it.  In fact, I’m surprised I did not write about this in past posts.   Ren was invited to one other birthday party last year, to a water park – and that was a pretty awesome for Ren too, and the mom specifically checked with me on if it was something she could do – but I did go along just to make it easier for everyone.    And, most recently, she was invited to a family friend’s birthday party at a roller skating rink.  She had the time of her life racing around the rink in her wheelchair!  I am so thankful for people (like you, Tracy!) willing to think of her.  Despite these great experiences, she doesn’t usually get invited places.  Anyplace she goes, we need to think about accessibility.  Not everyone is willing to think about that or deal with that.  After attempting to trick or treat the last couple of years…..it is apparent that much of the world is not set up for wheelchairs.

“Rollerskating”

 

TRICK OR TREAT

Speaking of Trick-or-Treating, because of the difficulties of doing this activity in our small town in past years — houses with lights on are spread far apart, which means getting in and out of the vehicle with her wheelchair, and 95% of the houses with steps to the front door — we ventured out to a bigger neighboring town this year.  It was great!  We found two busy streets with lots of houses with candy, meaning we could park the vehicle, get out and walk up and down the street back to the vehicle.   Though there were still houses with steps, most of the people were sitting outside on their driveway or sidewalk, making it pretty accessible for Ren to wheel up and get her candy.  We ran into a few people who recognized her from her year as 1st Princess!

Halloween costume = Twister!

 

SURGERY

Some may recall that a year ago October she had surgery to place a piece of hardware into her knee, in an attempt to straighten out her right leg.  Well, a little over a year later, and it worked!  So, in December, they had to remove that piece of hardware, which meant another surgery.  Things looked great, and then a few weeks later…..we noticed a hole in the skin and yellow pus.  Back to the doctor, and the next thing we know, she’s back in surgery to drain the wound and get stitched back up again, but this time with stronger stitches.  Since then, it has healed up nicely and we are getting her back up on her feet finally, working on walking again to strengthen up her legs and hopefully encourage some growing….before she is done growing!  I’m hoping for several more inches of growth before that happens….and she probably has less than a year, so she has to get moving!

Before and after surgery

 

PIANO

Ren is still in piano lessons, which she LOVES.  She played some pre-concert music again for their school Christmas program, and she had a “Facebook recital” where her piano teacher recorded her playing a Christmas song and posted it on her Facebook page.  We try to keep her activities pretty minimal during the school year, as we are busy with her brothers’ activities, including going to cross country meets in the fall and now wrestling meets in the winter, as well as some band events.  We save most of her activities for the summer, as that keeps us a bit more sane that way!

Pre-Concert music

 

CHURCH

For the past few months, Ren has been going to a youth group at a different church, as a friend of ours helps out and offers to take Ren with her almost every week.  Ren LOVES, LOVES, LOVES going to these!  She looks forward to it every week, and comes home telling me about worship, small groups, and praying.  They prayed for her when they learned of her surgeries, and even called me to find out how she was doing.  She seems to have made at least one friend there too, which she is so excited about.  Thank you, Amy, for lugging her wheelchair with you and taking her every week!

 

FAMILY

The only other thing to mention is that her grandma and grandpa and great aunt are our neighbors again now – building a house just down the street.  We lived across the street from them for 11 years before we moved away, and now they have moved up by us again, so it is nice to be near them again.  Ren and Aunt Jane get along really well.  Jane is deaf, and has some developmental delays as well, and they have fun hanging out together.  Ren gets to see three of her little cousins fairly often too, as they visit often from their 2-hour-away home, and I know she has fun with them too.  We were able to visit our relatives in Michigan for Christmas as well, which Ren and our whole family enjoy doing.

Ren and Aunt Jane

 

BLESSED

Despite the challenges that are faced, there is no doubt that we are beyond blessed with this little girl.  She lights up the room, brings joy to our hearts, has amazing strength and perseverance, and is already a teacher in many different ways.

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”  James 1:17

 

PRAYERS:
For those who like to know her needs, some prayer requests would be:

*For her to have a nice growth spurt of at least 8 inches this year.  She is about 4’2″ right now, and though I know she will not grow as a typical person would, nor would I want her to be TOO tall, as then it’d be harder for her to move herself around, it would be nice for her to be at a somewhat decent “short” height.  🙂

*For her brain development and growth.  It is apparent that she has cognitive differences, but she is still very capable in many areas, even academically.  But, it would be great for these differences to not affect her so much socially.

*For continued fostering of friendships at school and church, that she may find lifelong friends who are accepting of her and her differences, and willing to go out of their way to include her.

*For wisdom in decisions as we contemplate adding an addition to our home to add a bigger bedroom and bathroom for her, as what we have now makes it difficult for her to use it for what she needs.

 

 

 

 

 

 


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