Ren had a big birthday this April.  She turned 13!  A teenager!  A teenager?  How does this happen?  How does time go by SO fast?!  If anyone knows Ren, you know she LOVES her birthday.   Most years she is talking about it for like 6 months ahead of time, making plans on how to celebrate and talking to people who will listen.  As she gets older, she has shown more restraint in talking about it SO much.  However, we know she still loves it. But, what kid doesn’t?  But, what a time to have a birthday.  With our state Stay At Home order going on with the Covid-19 situation, we are stuck at home.  So what do we do?  Well, we copy what other people are doing to help others celebrate while remaining socially distant:  we have a birthday vehicle parade!

I have to preface this by saying that I had originally arranged just four of our family friends to do a drive-by birthday parade.  What ended up happening was one of these friends, along with some help from my parents, spread the word to other family, friends, neighbors, and teachers, and the girl was surprised with two separate parades with around 20 vehicles driving by, honking, shouting “happy birthday,” dropping off balloons, signs, cards, and gifts.  She was SO excited, soaked in ALL of the attention with a huge smile on her face, and said it was a GREAT birthday!  I love seeing the support for our daughter from so many people.  (Click pics to enlarge)





That is the big news, turning 13.  I seem to have not posted in this blog for over a year now.  There are different reasons for this. 1) A good one – It means she has not had any really big things like surgeries going on  2) Social media keeps most of our family and friends up-to-date  3)  As she gets older, I want to give her an appropriate amount of privacy  4)  I just forget to do it.

So, here is a run down of the past year or so:


Last summer she was in Miracle League baseball again.  She again took part in a day of adaptive water skiing, which she also loved.  She again had the opportunity to ride horse about once a week at our friends’ place.  And she again was in swimming lessons at the local YMCA.  I am pretty sure she will be involved in all of those activities again this summer.  Plus visiting with neighbor friends and family!  She also has taken an interest in basketball, and she will go (even now) to Grandma and Grandpa’s garage to shoot hoops.  We went on a family bike ride for Labor Day, and she was able to participate, using a motorized scooter attachment!



Ren is in 6th grade this year, and she still LOVES school!  I love that she loves school, and I hope this continues into middle school next year, though I am nervous.  Ren was in band this year, playing the clarinet.  She loves to play but needs to practice more. 🙂  She is taking piano lessons with Grandma this year, as it is just easier because of how close she lives to us.  She was not involved in anything else during the school year, as with her brothers’ involvement in sports made it difficult.  Plus, she makes up for it in the summers.


During this time of staying at home, she is doing some school work, practicing standing and walking with her arm crutches, doing the occasional impressive round of push ups, shooting some hoops, and waiting impatiently for this to be done so she can visit with other people!

Once again. thank you to everyone who shows this girl so much love and support.  You are gifts to our family.

Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change.  James 1:17  

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.


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




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



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.




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!



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



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



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!



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



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


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.







Summer Fun 2018

Flying by once again, summer is over and the school year has begun.  Here are some things that kept Ren busy this summer:

1. BASEBALL ~ Ren joined a baseball team in the Miracle League.  This is a fantastic organization, with hundreds of volunteers making it happen.  Each participant had a buddy to help them out on and off the field, and Ren’s was a wonderful mom, whose daughter also helped out.  We traveled an hour away each week for her to participate in a game, and she loved every minute of it.  She primarily used her wheelchair, but would use her walker at times as well to get in a bit more exercise.  The announcer called her “Racing Ren…” and everyone was so supportive of each other.  It really was a great time, even for spectators.  I am sure she will want to be a part of this next summer as well!


2.  SUMMER SCHOOL ~ For 4 weeks of the summer, she attended summer school, where she had fun classes like book club (with me!), and board games (with me!), and arts and crafts, and others.  The entire summer school participants got to go on a field trip to an amusement park 2 hours away, and she got to go on a few rides that she has never done before.  She had a blast!


3.  SWIMMING LESSONS ~ Ren would spend everyday all day in the water if she could.  She took lessons again at a local YMCA, and the instructor once again helped her in learning how to independently swim.  She is getting better, and even swims underwater on her own.  She is a fish.


4.  HORSE RIDING ~ Though not as often as last summer, Ren did some horse back riding at our friends’ house.  It’s good for her muscles and balance, and she enjoys it!


5.  ATVing ~ We have had this battery operated ATV for quite awhile, and someone kindly modified it to be hand powered last year, but the button was so hard for her to press and hold that it really was not practical to use.  But finally near the end of summer, T changed the button to a switch, and voila, she was able to ride.  She has fun riding on our dead end road, as well as on our land.  Such freedom for her!


6.  PARADES ~ Since she was Little Miss 1st Princess this year, several of our weekends involved going to parades to ride in a float and wave at people.  She LOVED doing this, and the others were great with taking care of her and her wheelchair while I tried not to think like a too-crazy-worried mom like, “What if the float stops fast and she flies forward!” since she has difficulty with balance and little control of her legs.  It only crossed my thoughts once or twice.


7.  WALKING ~ Ren surprised us by randomly deciding on her own to attempt walking with her forearm crutches.  One day she was found using them to walk across the kitchen floor, as if she thought on a whim, “I’m going to just see if I can do this,” and thought nothing of it.  I remember a doctor several years ago telling me she would probably never be able to walk using these.  I guess Ren thought she should prove that wrong.  She can only use them with her long (KAFO) braces and still has quite a bit of practicing to do with them, as it is quite slow moving right now, but she has a great start!


8.  FAMILY ~ She always has a great time with our supportive families.  Besides spending lots of time with Great Aunt Jane and my parents who all have now moved up by us, she spent time in Michigan with cousins, aunts, uncles, and grandparents, and she even got to fly to New York with me for my cousin’s wedding, where we saw many  different relatives.




So now school has begun, but I will be able to keep a close eye on her, as she is in my class this year!  She is extremely quiet and shy in class, and she has other things she still needs to work on and needs help with, so I will have a first-hand experience in trying to see what will help her be successful this year and in future years.  I get a little weepy as I see the differences between her and her peers, and I worry so much about if she will have good friends who will accept her as she is and take care of her and include her.  No one is mean to her (how could they be to this sweet girl?!), but my heart breaks as I see some who used to be friends with her decide they just are not really that interested in being with someone who has difficulty having a real conversation and can’t run around and play tag like a “normal” person.  To an extent I can understand, but, it still makes me very, very sad.



For those whom like me to give specific prayer requests, here they are:

  • For her to have at least a couple of good friends – now AND in the future – who will include her and take care of her
  • That she will grow!  She has a short amount of time left for her to grow, to continue to help her leg to straighten out, and to just be taller.  She is only a little over four feet tall, and she needs at least a few more inches.  I know she will be of short stature no matter what, but it’d be great if she could get up to at least 4′ 10″!
  • For growth also in her language and thinking skills

Thank you to those who pray for her, and to the many who show support to her and to us in this great journey of life, with a beautiful daughter who happens to have spina bifida.





Eleven and End of 4th Grade

Ren has had a busy six months, which is the last time I wrote on here!  So, here it is in a nutshell:

January:  Ren had a minor bladder procedure, where they inject Botox – yes, Botox – into her bladder.  This helps relax the bladder, which lessens the pressure in the bladder.  Too much pressure there causes urine to go into the kidneys, which can lead to bigger problems.  So far this procedure, along with some daily medication, seems to be keeping that all in check.


February:  The PT at her school brought in an adaptive sit-ski for her since her class was in a cross country ski unit.  She loved it, even when she went so fast on the very slick snow that she rammed into a fence.  The poor weather limited her use of it, but it was a great experience in trying it out.

Ren was invited to a birthday party at an indoor waterpark.  I went along this time, and she had a wonderful time playing in the splash pool and floating along the lazy river for like four hours.  She wanted to stay longer.


April:   Her birthday – She turned ELEVEN!  She had a party with friends at the bowling alley and had a great time.  She used the ramp to roll the ball down the lane, mostly independently. Her friends would help her out as needed.


May:  Ren’s PT at school also brought in an adaptive handcycle for her to try out.  She did really well and had a lot of fun, despite the amount of energy and work needed to do it.  She only had it for the last couple weeks of school, but hopefully they will be able to use it more next school year.   At the end of the month, she had her piano recital.  Oh, she loves that kind of thing!  She was so excited for this event, and she did a really nice job.



June:  The school year ended; her fourth grade year is gone….she just refuses to stay a little girl!

One more significant happening:  Ren has been scheduled to get a new wheelchair.  Her current one is on its “last legs” – the front castor wheels bearings are shot so they wiggle constantly, preventing her from going at any decent speed, the wheels’ alignments are off so she is always compensating for that, her brakes are being held in place by a hairband, and it is way too small for her – her knees are way up when sitting.  She’s had it since she was FIVE.  Here’s the thing —- We started this process on January 4th.  SIX MONTHS, and we are still waiting to for approval from insurance.  This is SO frustrating and upsetting.  I have no words to describe how I am feeling about all of this.   Sadly, this is normal for all wheelchair requests.  People have to wait months even to get a repair done.  These wheelchairs are their LEGS, their mode of getting from here to there, and the fact that this happens all the time….is really, really wrong.

Well…That is it for now.  The summer has begun, and she has already been involved with some activities, but I will save that for an end-of-summer blog.



12/31/17 Wrap up

On this last day of 2017, I just wanted to write up a quick update and some miscellaneous regarding the end of the year for Ren:

Leg Surgery:  On my last post, I mentioned that Ren would be having leg surgery.  She did in fact have this surgery in mid-October.  It was a “simple” outpatient surgery that involved placing some hardware on her growth plate on her knee, in order to stop growth.  What?  Stop growth, you say?  Yes.  The purpose of the surgery is to hopefully straighten out her right leg (see pic below).  The theory is that stopping the growth on the inside of the knee will allow the other side of the leg to continue to grow, thus straightening out the leg.  This has like a 99% success rate in “typical” children.  I did some research, though, and did find a case of a 4-year-old child with spina bifida having a similar surgery that did have success.  It takes a long time to see results, though, as we are waiting for the bones to grow.  For this one child, it took 2 years for it to be corrected.  So, in not less than 6 months, the doctor will take a look to see how things are going.  Pray that it is successful – that her leg will straighten out and that no complications will occur!


Halloween:  We did not do a creative costume this year, despite my good intentions.  Due to lack of time and energy, I dug through our bin of old costumes, and pulled out a Packer outfit which she also wore when she was like 4.  Somehow we made it work, though this will be the last time she can squeeze into it.  We did a short run of trick or treating — Trick or treating in a wheelchair in the cold weather is not a lot of fun.  And, let me tell you, it is on this night each year that I REALLY notice all of the NON-wheelchair friendly homes out there.  There were only 1 or 2 houses where Ren could go all the way to the door.  All of the other houses had steps, which made it impossible for her to go up to.  Thankfully most people were nice enough to bring the candy to her, or allow her brother or dad to bring it to her.

Christmas:  Ren’s school does a Christmas music program each year.  I have always been happy with the school’s intention of making sure she is fully included.  By this I just mean that they have always made sure she is standing up with her class – not separate on the floor while the rest of the class is on the risers (this happened in a previous school she attended).  Sounds like a little thing, but it is really big, and it means a lot.  This year she again stood using her walker – other staff carried her up and down the stairs to the stage, again something I am grateful for them doing.  It’s great to see her doing some singing too….in her earlier years, she just stood there looking cute.  OH!  And, this year she played “Jingle Bells” on the piano for pre-concert entertainment along with a few other kids.  They rotated at the piano, each playing a couple of times.  SO proud of her for doing this in front of the audience!

For the last couple of months, Ren has been telling T that she wants to learn how to play the guitar.  Her dad does some playing on his own, so he was very excited to hear this.  Since she was persistent in this request, we relented and found a mini-guitar to give her for Christmas.  She was VERY excited.


God is Good:  This last event is just something I wanted to share because it is pretty awesome.  One November day in church, Ren was filling out the “I Wish” pamphlet.  This is what I discovered Ren had written – all on her own – for why she wants to thank God:

I love this because in the recent past, she has lamented to me about her having spina bifida.  She would ask, “When am I going to be like my friends?”  “When am I not going to need my wheelchair?” “When will I be able to walk?” and was feeling quite sad about it all.  This made ME feel sad, and I tried to comfort her, saying that she is working on walking – that her surgery will hopefully make her leg stronger, and she will hopefully be able to walk with crutches some day.  But, then these words came in my mind and I shared with her: “But, what matters the most, is that God made you. And he does NOT make mistakes, and what He creates is always good, which means you are made good, and that you are the way that He wants you to be.”  She seemed satisfied with this last answer…so, to see her write that made me think that she too believes this.

It’s not that we are happy with or wish this disability on her, nor would we reject any opportunity of healing, as it of course brings its challenges for her.  But – It’s more of being okay with it because God created her, and there is purpose in it.  God does NOT make mistakes.  And He is good, all the time.


10/1/17 – A Real Princess! And, New Braces & Shoes

So, Ren is part of our town’s royalty. She is 1st Runner Up for Little Miss of our town!  Before you get too impressed, please know that this is not a competition for the little ones. It is literally a name drawn out of a hat.  There were four little girls at the ceremony, and three were randomly drawn to represent our town’s Little Miss royalty.  Their job?  To ride on a float in parades with the older girls royalty.

Late this summer, while at a local parade, Ren made the comment to me that she’d like to be in a parade someday.  So, as the royalty float for our community rode by, I said, would you like to do that?  And, she said, “Yes!”  So,  I filled out the “application” for the Little Miss of our small town (which was just a set of basic questions:  What is your favorite subject, Do you have any pets, etc) and handed it into the city hall.  On a Saturday morning in September, her name was drawn for the 1st Runner Up.  She got her sparkly crown and her long sash, and rode on the float later that evening, waving to everyone, and LOVING it.    I have to admit, I was a little nervous how she would do, if she would like sitting on a float waving to strangers, and hanging out with unfamiliar girls of all ages at the Queen’s Tea, which I learned is a traditional gathering of royalty before the parades.  But, she has been in three parades and LOVES it and can’t wait for the next one.

The other news we have, which may seem like something little to those who have normal feet, is that she got new shoes!  These are not any regular shoe, but a specially designed shoe by NIKE, called Fly Ease, which has this cool zipper going around the shoe and Velcroing (is that a word?) closed.  We have tried out other orthotic shoes, and some work okay, but none have really looked “normal.”  These shoes make it so easy to put her shoes on and off, AND they look cool.  LOVE them.  She also got new braces at the end of summer.  It took awhile for her to be able to wear them regularly, as they had caused some sores on her leg and so we had to get them adjusted, and she had to stay off them for awhile to allow time for the sores to heal, but they seem to be good now, and they are nice and colorful.


In a week and a half, Ren will be going in for leg surgery.  I will update you on this as this happens.  But, prayers for a successful and safe surgery would be great!



8/20/17 Summer Fun

Another fun-filled summer is coming to an end.  Ren stayed pretty busy, which means I stayed pretty busy!  She again had horse back riding, swimming, dancing, and summer school.  But, new this summer was trying out water skiing!  Twice this summer, in June and August, she was able to attend an adaptive water ski event, where two water skiing teams and an organization called NASA (North American Squirrel Association) partnered in providing this opportunity for individuals with physical and other disabilities.  The first time in June, the weather was awful ~ cold, rainy, and a storm coming in resulted in a shortened time with only one ski run in.  But, she loved it so much she wanted to go again in August.  So, a few days ago, she attended again ~ once again in colder rainy conditions, but no storms so she got in three runs this time before she decided she was too tired and cold to go anymore.  What a great thing though for organizations to provide (at no cost) and for people to volunteer in order to give these kids this chance to try something they normally would not be able to do.  I’m so thankful for them.

 In July, she again attended a week long dance camp.  Last year was ballet, this year was a musical theater.  She had fun, but when the recital came, she had stage fright!  Whenever she looked at us, she froze!   She had three dances.  Two of them she was in her wheelchair, and one she used her walker.  Thanks again to the dance studio for making accommodations for her!

We have a trampoline that she bounces around on, and the horse riding that she has been doing helps her balance and core strength, which is needed to eventually walk with arm crutches.  One day this summer, we traveled to meet a man who is paralyzed from the chest down and in a wheelchair, yet still owns and runs his own horse ranch and rides independently.  The day we came to see him, he and his wife were in the midst of packing for a several week trip out west to ride on trails.  He took time to show us how he is able to do everything, with some modifications and accommodations here and there.  It was good for Ren to see how someone who is like her is able to do things.  We are hoping to see him again, perhaps at a horse show in September.


The swimming she did over the summer also benefits her entire body.  She has had two 1:1 lessons at the YMCA, and for the first time in a long time, she has an instructor who is actually teaching her how to swim.  She has ALWAYS loved the water, but she has always been hesitant at going under water, and not many instructors have actually worked on helping her to learn how to swim in a way that does not require the use of her legs.  It’s possible to do so, we’ve seen it – but finally she now has someone helping her do this again.  She has made huge progress just in this short amount of time. I’m so excited for her!  Besides the lessons, Ren was at a couple of pools this summer and showed me once again how independent she can be and wants to be…so much that she scares me a little bit!

Along with all of these activities were some trips to some zoos and playgrounds and time with relatives.  OH, yes, and a big trip out east with our family!




So, only a couple of weeks before summer is gone and she goes back to school….and in fourth grade.  Why do our children have to grow up so fast?!   We are looking forward to a great school year, and hoping to see great progress in all her skills.  Please pray for her to grow cognitively so she can keep up with school, socially so she can grow in friendships, and physically so she can be strong enough to learn to walk with arm crutches.

John 9:2-3:   As he went along, he saw a man blind from birth.  His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.”




4/22/17 TEN!

Ten.  Our daughter Ren turned 10  years old this week.  TEN!  Ten years ago, we brought into this world a beautiful little girl with spina bifida.  We had no idea what our reality would be.  I still remember the night of her birth.  As I was lying down preparing for the C-section, I put all trust into God’s hands.  I was nervous, but at peace.  I remember saying, “Thy will be done, Lord.”  Well, His will is pretty awesome.   It has been ten years of some challenges, some extra work, some scares, some hospital stays, some disappointments, some sadness, but mostly….JOY.  She brings so much JOY into our lives.

Ren enjoyed three celebrations of her birthday.  One at her grandparents with cousins, aunts, and uncles; one at our house with just our family; and one with her friends from school.  She was happy with every single one of her gifts, as usual.  She had just a pink birthday cake, because she could not think of any theme to have.  Apparently she is too old for that.  I asked about a Frozen theme, and she cocks her head to the side, chin down, gives me a look and says, “Mo00mmmmmmm!” as in – are you kidding me?  TEN!

She received a little extra surprise gift for her birthday too.  We had gotten this toy ATV about a year ago.  Since it is difficult for her to roll around in her wheelchair outside in our yard, we thought this would provide a way for her to be able to ride around the land in a faster, more efficient way.  However, it was foot-powered.  She had to press on a pedal with her foot to make it run.  She is unable to do that.  She needed it to be hand-powered.  T attempted to start the task, but….it didn’t happen.  So, I contacted an organization that does these things, and through them made some connections with the engineering department at a state university, but they were 3 hours away and it just never worked out to meet up with them.  Since it’s now (finally) spring, I started thinking about it again, and on a whim the other night, I put an ad in a Facebook “for sale” area group, asking for help in modifying her ATV.  I received 3-4 responses within a half hour.  One of them said, “My husband can do it.  He will do it for free.”  Wow!  I bring the ATV to him Friday evening, they tell us late that night it’s ready and we can get it the next day.  Wow!  We went last night to pick it up, and it works perfectly, and Ren LOVES it!  She was SO happy and giddy trying that thing out.  In watching her, the man said, “Oh, that just made my day!”  He did it out of pure generosity and kindness.  Just a nice guy wanting to help someone out.  We gave him some pure maple syrup as a token of appreciation, and in their conversation, T also offered to set up his business website for him.  On the way home, Ren says, “Can I practice riding that ATV every day??”

Since it has been 8 months since my last update (!), here’s a quick recap:   In September she started school. She is in 3rd grade and still loves school.  For Halloween, we made her Vanna from Wheel of Fortune and she won first place in her age group costume contest.   In December, she stood up with her walker and sang with her class during the Christmas program (sadly, no good picture of it). In January (well, all Dec-Feb), she was at a lot of her brothers’ wrestling meets, making friends with strangers.  In February she played in a piano recital, which she was so excited for and did a nice job.  I played a duet with her…..we messed up….and laughed about it.  And in April, she turned 10!

This girl is our little miracle.  Our bundle of joy – literally.  Happy 10th birthday, Ren!

Ren Costume ren recital 18136306_10155305237473092_1659345157_n 18056970_10155302677808092_6298235791045148269_n17990783_10155282482508092_3260348280495325944_n





8/7/16 Festival Fun

This last week, my husband organized a festival, called Athanatos Arts and Apologetics Festival.  It is a Christian festival, focusing on the arts (music, film, literature, art, etc) and on apologetics (defending the faith).   There was a speaker from Thailand and an author from Egypt.  There were presentations on education, human trafficking, zombie apocalypses,  confederate soldiers, arguments for God, and much much more.  There were authors from around the country who talked about their books and writing experiences.  There was music ranging from Celtic, to classical guitar, to pop/soul, to Christian rock.  There were screenings of movies, including one which gave its first public showing by its producer there.  There were workshops on writing and music, an improv comedy show, and a DJ.  There was a vendor tent and of course a food tent.  And more.  There was exceptional fellowship and fun while building faiths and relationships.  It was its first festival, and one of the best ones I have been to.

Now, why do I talk about this festival on Ren’s blog?  Because the birth of Ren is one of the factors that led Tony to formally creating his ministry organization…which led to his prolife involvement….which led to his publishing company…which led to his writing contests…which led to him wanting a place where his authors could have a platform…which led to this festival.

And, Ren had a great time there too.  She and another girl became friends, playing together and giggling their heads off.  (See pics below) I checked on her occasionally but she was left (happily) on her own for much of the time, and I was okay with that knowing she was in a safe environment and knew she had others checking her too. She ate a lot, rolled around in her wheelchair, walked around in her walker, listened to the music with us, and laughed…a lot.

If you are in the Wisconsin/Minnesota area next August, I strongly encourage you to look into attending this festival.  I am not being biased, either.  Well, maybe a little.  But, everyone whom I talked to who had attended had a great time and insisted it repeat next year.  Here is the website to his ministry organization:  http://athanatosministries.org/  and the festival, though it will change for next year, of course:  http://christianartsfestival.us/ There is a Facebook page as well that has photos and videos of the event:  https://www.facebook.com/ACMArtsFestival/?fref=ts

Thank you to those who came to show your support for either Tony, our family, or the ministry in general.  Your presence was appreciated beyond what you will know.   Even those who could not come but at least gave simple words of encouragement.  That too we are thankful for and appreciate.  Really and truly.

“He has set eternity in the hearts of men.”  Ecclesiastes 3:11



Ren’s new friend helping her put on her braces


7/28/16 Summer Fun

The summer has been flying by, and this partly due to Ren being in so many different activities.  She has worn me out!  She started out the summer with Summer School, which was in the mornings for 5 weeks.  On one of those days, the elementary school took a field trip to a trampoline park. I came with as a staff member, and so I was able to see this girl-who-cannot-walk crawl around and “jump” on the trampolines, and dive into the foam blocks all on her own.  Well, scratch that, she COULD do it on her own, but bless all her friends and schoolmates for taking care of her when they thought she needed it.  I watched her for awhile, but wandered away most of the time after I realized she was just fine on her own. She had a blast.

For the last two weeks of summer school, she was able to participate in swimming lessons through the school.  They provided her with a 1:1 instructor, and she loved it of course.  We just literally three days ago put up our own pool in the backyard (I know, a bit late…but better late than never, right?), and she has enjoyed that the couple of times in there so far.  Hopefully there will still be plenty of weeks left to enjoy it before fall weather approaches.

A few years ago, Ren was in horse therapy.  I had read that it is really good for the rider’s core and balance.  So, I looked into it a bit around here, but in the end, we found the next best thing.  Some friends of ours have horses, and so about once a week, she goes riding for about an hour.  Not formally horse therapy, but I know that just riding on the horse is good for her core and balance.  They have her do some activities, like throwing a ball into a bucket throughout the session, so that gives her body a good workout and somewhat therapy related.  We are still doing that; in fact, we just went again today.  I’m thankful that we are able to do this, and so close by!  She always enjoys going horse riding!

Every two weeks, Ren has also been going to physical therapy.  The therapist is introducing her to walking with forearm crutches.  It is and will be a slow process, but if we can strengthen up her core and balance, and other muscles, then maybe it can start working for her.  I really would like her to be able to walk with these crutches for even just short distances, really just so she can at least walk around the house.  If she could do that someday, that would be fantastic.  Now, if only we could remember to do the exercises that the PT tells us to do…..

Ren has always, always, always wanted to be in dance.  In the past she often talked about going to her “dancer place,” and though it was an imaginary place, it was a real dream for her.  So, I decided to check into this too.  I corresponded with an area dance studio, inquiring as to whether or not they would be willing to accommodate for her in one of their week long dance camps.  They were happy to oblige, and so we signed up for the ballet camp.  I figured this would be easiest for her to be a part of, and it worked well within our schedule.  She had her wheelchair, and she wore her KAFO (tall) braces, so that she could stand at a ballet bar for part of the time.  I drove her the 40 minutes to get there and watched through the window as she worked so hard to move her leg around in the different positions, and I saw her do her own modifications of the movements that she was unable to do.  I watched her make things work for her, even if she did not keep up totally with the others.  I watched the other children look at her curiously for first day or two, and then quickly see her as just another girl who was a part of the group and did things differently.  The dance instructor incorporated her well into the three dances they practiced; with her at the bar for one dance, and then in her wheelchair for the other two, and there was a high school dancer nearby to help when needed.  I watched Ren soak in this wonderful opportunity, enjoying every second.  She LOVED it.  I am so thankful for the people who recommended this place, and for the staff who worked with her.  I am sure we will be looking into it again next summer.  Because for one week, she got to be a real dancer, in a real dancer place.

I guess that is it!  Below are some pictures and a video (please ignore my frantic request at the end for a student to go check on her; it was the first time she had gone, and she freaked me out.  She came out laughing, of course) of her having summer fun.  Until next time!