Our "Beau"tiful Blessing

Thursday, August 13, 2020

I guess they were right...

Deep breath.  

When I don't have the right place to express things or people to talk to, I end up writing.  So here I am.  I haven't blogged about Beau in quite some time.  

A couple years back, after sharing one of the many positive stories about Beau's classmates at Hansen Elementary, a handful of parents, with older special needs children, told me, "enjoy it now, because once you get to junior high and high school it all changes".  I brushed them off as Negative Nancy's and knew there was no way this would change for Beau and his classmates. 

Yesterday and today, Beau attended Boost at his Junior High.  It's an introduction to Junior High so to speak.  I didn't drop him off yesterday, the babysitter did, however, I took him today.  I saw a bunch of the boys he had gone to elementary school with, out front.  I walked Beau up as his para was there for him.  Not a single one of the boys paid attention to him being there.  It was like he was invisible.  I was slightly saddened but I left thinking, I'm sure once they get inside, it will be better.  

Tonight was his 6th-grade graduation party.  It had been postponed due to COVID and the kids were finally getting to celebrate.  It was held at a place called Palmers which is an outdoor park with go-carts, a large jumping cushion, goofy golf, a batting cage, and driving range. I got there about 15 minutes early with Beau so that it would give him time to adjust and allow him to watch other kids arrive.  The moms that were there working the event were very welcoming and all know Beau.  He noticed a few boys jumping on the large cushion thing and he laughed because he loves to see things go "up".  A boy named "C" came over and asked Beau if he would like to jump with him.  Beau immediately said yes and I asked him to make sure that he watched him carefully while jumping because Beau doesn't have the reaction time we do.  They jumped and Beau squealed and I got to take this single picture.

It felt good to see Beau with his peers.  A few minutes later more kids started showing up and it became very crowded on the cushion (sorry don't know what to call it).  Kids were doing backflips and Beau was now in the way and nobody was paying attention to him.  One of them was annoyed when Beau "pushed" him, however, Beau was falling over and reached out to this boy to catch himself.  I was right close by knowing at any moment I may need to move him.  It became unsafe so I coaxed him down as the boys were getting ready to run over to the go-carts which had opened up.  

We sat down and Beau became nervous again.  Drooling - a lot.  Signing "go".  I wanted him to wait.  More kids showed up and we were right by the entrance.  Those same boys that are Beau's "buddies" arrived but didn't notice Beau.  Again, I get it - they are best friends and they were focused on getting in and playing and doing as much as they could.  The girls who had always been "mother hens" didn't notice him.  Again, he seemed invisible.  

One of the mothers that were there to drop that group of boys off was so kind and came up and talked to Beau.  Her son has been really great to Beau over the years.  She really wanted to try hard to get the kids to play and help make him comfortable.  She was able to get two of the boys to leave the batting cage to come and say "hi".  At this point, I wanted to cry.  I was holding back tears.  She meant well and she's so kind - but those boys didn't want to have their fun interrupted.  Nobody should have to be told they need to talk to Beau.  Again - she was being so kind and was trying really hard to help us out, which I genuinely appreciate.  But Beau was already anxious.  I just had this crazy thought that maybe they would voluntarily come up to him - a bit like "C" had done (granted that only lasted a few minutes anyway).  

I guess they were right.  

Don't get me wrong.  I know 12 and 13-year-olds are just kids.  Kids aren't meant to think about others.  They were there to have fun.  It was their party and they earned it.  I don't blame them at all.  It's just one of those pivotal moments in this special needs journey where differences are glaringly obvious and it hurts like hell.  


We got out of the parking lot after having only been there 30 minutes and I cried.  Bawled.  Quietly of course.  Making sure Beau couldn't hear me.  I blared his music knowing that's what makes him happy.  We drove around for a while and went and got french fries with ranch because that also makes him happy.  I calmed myself down and we picked up Delaney and came home.  

I guess they were right.

And then I watched Delaney love on her brother and I thanked God once again, that he will always have his sister as a best friend if nothing else.  And I lost it again and went into the back room and sat down and cried while they played.  

I snapped this picture.  I hate sharing such an intimate moment/picture but this is the only way I can express how hard this journey is.  It's lonely some days. It's sad some days. It's fucking hard some days.   

I guess they were right.

I don't want my son to be a burden, a charity case, a person that another kid has to be told to talk to, forced to play with.  I saw it this morning and saw it again tonight.  This is a whole new stage of life for these kids.  I love this group of kids and always will.  What they have done for Beau and our family since kindergarten AND for the inclusive park has been incredible.  Their families are amazing.  I'm just sad for him right now.  I should've expected it.  I was warned but I didn't want to think negatively. I even thought I shouldn't share this because I remember what I thought of those parents that shared it with me years ago.  But then I wouldn't be real.  I wouldn't be transparent.  

I guess they were right. 

Beau's nonverbal but he still has feelings and emotions.  Imagine how it must feel to be trapped inside your body unable to truly express what you want.  He still longs to be loved and interacted with.  He wears diapers - so what.  He walks a little funny - so what.  He drools - so what.  He grunts - so what. His smile and laugh will light up any room and he is incredibly joyful, witty, and communicates so well with his eyes and hands. Why don't they want to play him with?

I guess they were right.  

I needed this outlet tonight.  I needed to express my feelings when I didn't know who to express them to or how to get it out.  Give me my evening of being sad and tomorrow I will put my chin up and forge ahead and pray that fellow special needs students will want a friendship with my son.  Right now it just really hurts. 

Dammit.  I guess they were right.

Friday, March 1, 2019

Beau's Book: Puppies

Thursday evening was Hansen Night at the kids' elementary school.  It was a chance for the student to show their parents what they are learning in school and showcase some of their hard work.  

We started off in Delaney's 1st-grade room.  This little lady was so excited for us to see what she has been working on.  She had written a book and created the illustrations for it as well.  She read it to us and she was so proud.  She showed us all of the great things they are working on in class and it was fun to see her in her element.  Her favorite place, aside from home, is school.  She has told us that many times.  I have to take a moment to brag about sweet Delaney.  Not only is Delaney an incredible sister to Beau, she is extremely intelligent.  When we recently got some of her reading testing back from school she is at twice the level she is expected to be at her age.  It's such extremes with these two kids.  Delaney is way down in one direction and Beau is at the other end.

The Weichers Family

She knows her blends!

Delaney showing us how they use their tablets for learning.

She is such a smart young lady!
After finishing up in Delaney's room we stopped and spoke with Beau's special education teacher, Mrs. Katie Reed before heading to his general education 5th grade room.  Let me stop for a moment and talk to you about Mrs. Reed.  She has been working with Beau for a couple years and she is the kind of special education teacher you would want for your special needs child.  She works extremely hard, she thinks outside of the box and she pushes Beau every single day.  She believes he is capable of so much and she will do whatever it takes to help him show the world what he knows.  Katie is a quiet hero.  She doesn't make it known all of the incredible things she is doing behind the scenes.  There is so much that she can give to future teachers and I hope that she can be recognized for the amazing work she has done with Beau. 

As a part of Beau's assignment in the general education 5th-grade room, the kids were to write a non-fiction book.  His classmates wrote about the westward expansion however Beau chose a different topic.  He worked with Mrs. Reed and his para, Ms. Erin to do this project with as little assistance as possible.  Here is how Mrs. Reed explained it to me: 

"He picked the topic with his communication device.  He navigated to therapy and then the animals page for puppies.  I asked him to brainstorm what he would like to write about dogs.  He picked 4 sub-topics.  We then found 3-4 books/articles that talked about service dogs and the play section of his book was his own personal experience with the service dog at therapy as well as his dog Nyala at home.  He then used his device to summarize with 3 details he found in the books.  We would work on one section of the book: get an idea, where does the idea fit with your 4 sub-topics?  He would then choose.  We needed some prompting to make it a sentence but otherwise the idea/facts he got from the book.  We wrote his sentences from what he had put into the device as he created them under each sub-topic.  He then used his computer to spell as we dictated the sentence out loud.  He didn't look at our spelling or his device.  He just spelled the words phonetically if he wasn't sure of the actual spelling."

Once he had completed the written portion of the book, his 5th-grade teacher, Mrs. Pease, asked for 2 volunteers to assist Beau with the photos for his book as well as the "About the Author" page.  As I was informed by his para, as well as the teacher, kids tend to "fight" over who gets to work with Beau.  Mrs. Pease explained that she generally has too many volunteers and has to limit them and take turns.  For this project, two young men, Asher and Will, signed up to help Beau.  These 2 boys had to miss some recess and use some of their independent work time to be able to work with Beau on this.  

Inclusion matters.

When we got to Mrs. Pease's room we were so excited that Asher happened to be in the room as well.  He graciously offered to read Beau's book to us and he explained what he and Will had helped Beau with.  Asher stated that they looked through a bunch of pictures of dogs and had Beau choose the photos he wanted that best went with the book he had written.  Then Asher and Will wrote the "About the Author" portion of the book.  Beau looked on with pride and was so excited to see Asher and hear him read his book.  

Inclusion matters.

Asher reading us Beau's book about Puppies
Asher and Beau
Here is Beau's Book about Puppies:

Cover Page

 Here is the About the Author section that Will and Asher wrote:

Here comes the even more amazing part: reading the story that Beau actually typed out.  Non-verbal doesn't mean stupid.  Non-verbal doesn't mean he doesn't have something to say.  Just because Beau can't talk, doesn't mean he can't type or use assistive communication to express himself.  This book is powerful for so many reasons.  Some of the items he included in this story aren't things that his teacher, para or classmates would know.  He talks about the "therapy dog" that he walks and states that the dog is a boy.  At therapy at EDI, one of Beau's therapists has a therapy dog named Ammo which is a male dog.  It's a black lab that Beau has completely bonded with and he looks forward to every Wednesday because of that dog.  He mentions the dog going outside to swim - he and Nyala swim in our pond together all summer long.  He connects with dogs, and they connect with him, and it brings out something amazing in him. 

I wish nothing more than for Beau to have his own service dog.  Some day, he will have that. 

There are lots of different thoughts in this post, so I guess I will end with the highlights!
  • Hansen Elementary is amazing for both our children.  When inclusion is a priority, everybody wins.  
  • Beau's classmates are special kids.  Inclusion matters.
  • Katie Reed is a forward thinking, think outside the box, amazing special education teacher. It took a lot of extra time - but that meant that Beau got to write his book just like his classmates. Inclusion Matters.
  • Non-verbal doesn't mean stupid.
  • We WILL find an organization that will train a service dog for Beau, no matter what!
As always, thank you to the incredible teaching staff at Hansen Elementary.  Delaney and Beau love school because of the love they experience while there.  Thank you to the special education teachers that have a very challenging job!  Thank you to the gen ed teachers that value inclusion and work to make adaptations to their classroom so that EVERYONE is included.  Thank you to Beau's classmates for making him a valued part of your entire class.  He will need you in the years to come and I hope that you will continue to see how important your friendship with him is.  

Inclusion matters 💗

Thursday, December 13, 2018

It's Been a Long Time Coming: ZBTB18

I guess I'm not sure how to begin this post.  Sometimes as parents of special needs children we don't always know exactly what to say or how to feel about certain tests.  I've been thinking the last several days about the most recent test results for Beau. Let's go back several years and bring it to the present.

A year after Beau was born, and only months before we would be hit with his diagnosis (of partial agenesis of the corpus callosum, epilepsy, non-verbal and global developmental delay), we had been pregnant.  It ended up being a partial molar pregnancy and obviously, as a result, the fetus contained 3 sets of chromosomes, was deformed and we would end up miscarrying.  A partial molar pregnancy is a mess and isn't just like your typical miscarriage.  It was months of blood tests and lots of doctors appointments.  It turned out to be a blessing in disguise as Beau's health would take a turn for the worse just a few short months later. 

Fast forward a couple years when we were finally ready to consider having another child.  We worked with Beau's neurologist and the genetics team at the University of Iowa to run some tests to determine whether Andy and I were at risk of having another child like Beau.  They ran testing based on his symptoms and nothing was found that indicated Andy or I had passed on any particular condition to Beau.  We felt safe to try again for another child.  Delaney was born in 2012 without complication and is an extremely healthy and very intelligent 6-year-old girl. 

In August, during our visit with the neurologist, he recommended doing the GeneDX whole exome sequencing.  The genetic counselor came in and spoke with us and we decided we would all be tested and see if maybe something would pop up.  The routine testing we had done years ago hadn't provided any answers but it sounded like this might potentially give us our answer. Here is the definition from the GeneDX website as to what this test is:

"XomeDx, or exome sequencing (ES), can be used to identify the underlying molecular basis of a genetic disorder in an affected individual and is best suited for patients who have a genetic condition that routine genetic testing has not been able to identify. The XomeDx test targets exons, which are the protein-coding regions of the human genome. Exons are captured and sequenced using massively parallel sequencing."

Having almost forgotten about the testing, I was surprised when late Thursday night (while we were vacationing in Las Vegas) I got an email saying both Beau and I had test results in our MyChart.  I immediately remembered the testing and opened up our charts only to find that it said we needed to contact our doctor for the results.  Having used MyChart enough, I knew that if they hadn't found anything, the results would have been in the chart.  It was after midnight that evening and on Friday I contacted the nurses in neurology.  They let me know that we would have to consult with the genetic counselor to go over the results and she was already gone for the day.  I knew then, that we definitely had an answer, I just didn't know what that answer might be. 

Luckily the weekend kept me busy and distracted and right away on Monday morning I contacted the genetic counselor after dropping the kids off at school.  I was happy that she picked up right away. 

Imagine my feeling, when after almost 11 years, she told me, "Amanda, we found the answer."

Me: "You did?!?!"

I was excited, nervous, sad, scared all mixed into one.  Maybe I didn't want to know.  I mean, after all of these years, I had accepted the fact that God designed Beau to be unique and to teach us things about life, and the giving of oneself and he was just the way God designed him to be. 

We didn't have an answer, the doctors didn't know, it was just a fluke. We knew we couldn't do anything to change that. 

But on Monday, that answer came with the following letters and numbers: ZBTB18 related disorder.

What does that mean???

Honestly, we don't know all the specifics just yet.  We will meet with the neurologist and genetic counselor in March.  We know this is rare.  We know that this genetic mutation in Beau did NOT come from Andy or me.  If I'm being completely forthcoming here, I can't tell you how relieved that makes us feel.  You don't want to feel like something in your DNA caused this mutation.  You don't want to feel like you did this to your child.  That sounds silly and I know no one chooses to pass on some genetic condition to their child.  I just know that it provided me with a sense of relief.

We know from the counselor that this mutation matches up well with his symptoms.  Individuals affected by ZBTB18 have intellectual delays, are usually non-verbal and they have disorders of the corpus callosum as well as other brain abnormalities.  The only one she didn't see from the few other cases was epilepsy.  However, when you have brain abnormalities it seems like epilepsy is always a possibility. 

I really wish Dr. Joshi was here.  She was baffled by Beau's case for years - always wanting to pinpoint the cause.  Tests weren't as advanced 10 years ago.  She'd be pleased to know we have an answer. 

As I know there are some readers of this blog from all over the world, I would be interested to know if any of your children or anyone you know of might have this rare genetic mutation.  It's a big longshot but you just never know!  There isn't much information out there and it would be nice to compare notes, so to speak, with another family.  I could probably provide a lot of information for another family since we have been doing this for 11 years, not knowing it was ZBTB18, but knowing we had a child with a brain abnormality and learning what we've learned over the years.

So for now, nothing changes.  We keep on doing what we've done for nearly 11 years.  We treat his symptoms, we get him the therapy he needs, we give him meds to control his epilepsy, we teach others about the beauty of those with intellectual disabilities, we advocate for those who don't have a voice, we give back to our community, we raise money and build an inclusive playground, we laugh, we play and most of all we love him.  We thank God for designing Beau in such a unique and special way.  We also thank Him for believing that Andy, Delaney and I, as well as our family, would be able to rise to the challenge.  It's not easy.  It's scary sometimes.  It's frustrating some days.  It's something that we will work through our entire lifetime.  It doesn't end at age 18. 

Today I am thankful for our answer.  I'm thankful for advances in science and testing that led to this discovery.  I'm thankful that having this answer might provide scientific data and information for future families.  I'm thankful that you all follow along in our journey and share in all the highs and lows.   

I hope all of you are lucky enough to know someone like Beau at some point in your life.  They will teach you lessons you won't learn anywhere else. 

“For You formed my inward parts; You covered me in my mother’s womb. I will praise You, for I am fearfully and wonderfully made; marvelous are Your works, and that my soul knows very well. My frame was not hidden from You, when I was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in Your book they all were written, the days fashioned for me, when as yet there were none of them. How precious also are Your thoughts to me, O God! How great is the sum of them!” Psalm 139:13-17.

Monday, July 2, 2018

The Wedding Gift

“Sometimes those who give the most are the ones with the least to spare.” ~Mike Mcintyre

Our lives have been incredibly blessed over the years with caregivers for our children that love and care for them as if they were their own.  Finding childcare, especially for Beau, is very challenging and requires finding just the right person.  The last few years we have been blessed with Kelsey. 

Kelsey came to us the result of an ad I placed on the UNI job board.  She was attending UNI for special education and her plans included staying on to be in the Masters Program after finishing her undergrad.  Our first meeting took place via FaceTime and we could tell right away that her smile and bubbly personality would be a great fit for our kids. 

She’s been with us now for 2 years and she is our go-to sitter for our kids.  I’ve never seen someone love children so deeply that aren’t even her own.  To say she has a special bond with Beau would be an understatement. 

A year ago she became engaged to be married to her boyfriend Matt.  She asked permission for Beau and Delaney to be in her wedding.  I was flattered but quickly asked if she was sure she wanted to do that.  After all, Beau can be unpredictable and the last thing I wanted was for our children to somehow ruin her special day.  She said it didn’t matter to her and that she wanted our children to be a part of her wedding.  

As the wedding drew closer, Kelsey and Matt placed an order for 250 of the handmade Bracelets for Beau to give away as wedding gifts to those who attended.  She said she wanted to make her guests aware of Beau's Beautiful Blessings and the Place to Play Park and her own passion for inclusion. Our group was honored and 250+ beautiful bracelets were handmade and packaged with a special message for the wedding guests. 

The wedding of Kelsey and Matt was this past weekend.  Friday evening was the rehearsal and dinner. After the dinner, Kelsey and Matt gave us a check which I assumed would be for $250 for the purchase of the bracelets.  You can imagine my shock when the check was more than that and was at a level high enough to receive a plaque on the fence wall.  I sat there amazed that this young couple, both in the masters program at UNI and both working part-time would give such a generous amount of money to our playground.  I spent most of the evening fretting over it and then realized I shouldn’t be surprised because this is Kelsey’s personality and who she is. And if she didn't want to do it, she wouldn't have done it.  

One would have thought this generous and kind story stopped there.  But it was only just beginning.  

Saturday was the wedding.  It was one of the most beautiful weddings I have been to and the first wedding for our children to not only attend but to be a very special part of.  I was quite nervous, praying Delaney wouldn’t be too shy and that Beau wouldn’t get too scared by the crowd of people, to walk down the aisle.  To our complete relief and joy, both kids did amazing and it was quite a moment for us as parents.  A few years back that never would have happened for Beau.  A year ago, Delaney would have been way too shy and afraid to walk down that aisle.  She was so focused on making sure her brother held his sign and walked with her that I don’t think she had time to focus on her own nerves.  It was a big step for our kids and we couldn’t be more proud of how they did. 

The reception was amazing as well.  We walked in and were able to see this amazing table set up with a photo of Kelsey and Beau as well as our display board for the Place to Play Park.  The bracelets were there in their bags and ready to hand out. After everyone got their meals, the bridal party started their speeches.  Kelsey had told me she would be making a speech about the bracelets and she mentioned that while she would be talking, the bridesmaids would be handing the bracelets out to the guests.

I was anxious to hear her speech.  I failed to record her speech because I wanted to be fully in the moment and hear what she had to say.  I had no idea that the following words would come out of her mouth. 

You can read the full speech in the photo above but here is the part that took my breath away: “Matt and I wanted to do something special for our ring bearer (Beau) and flower girl (Delaney) and their parents to show our love for them and our support for the park.  We purchased some bracelets from Beau’s friends and are giving them to you in the hopes that you will think about kindness and inclusion for all when you see them.” 

And then there was this:

“Matt and I will also be donating all funds from our wedding to the Place to Play inclusive playground in Cedar Falls, Iowa in honor of Beau and the Weichers family. We believe and support wholeheartedly a park where all children can play together.”

And then I cried. 

I audibly said, “no you aren’t” when she said it.  I then looked at my family and said, “who does that?"  

What young couple in their early twenties donates their wedding money to a charity??

It wasn’t long before complete strangers were walking up to our table handing us cash for the playground.  After the Dollar Dance, Kelsey walked over the cash and handed it to us for the playground.  And I kept asking myself, who does that??? 

I want you to think back to your early twenties and your wedding.  Ask yourself honestly, would you have given away all the cash/checks given to you at your wedding?  I asked myself this question and my honest answer was, no, I wouldn’t have done it.  There were bills to pay, a house to buy or a honeymoon to go on.  At this point in my life, however, that answer would be different, thanks to Beau. 

This should tell you everything you need to know about Kelsey and Matt and the kind of people they are.  I was asking myself repeatedly about “who does this” and then I realized exactly who does this. 

A person with a giving heart.   

A person who has empathy and compassion for those with differing needs. 

A person whose parents have raised them to understand the truly important things in life. 

The type of person I hope my own daughter will turn out to be. 

I started this post with the following quote and will say it again here:
 “Sometimes those who give the most are the ones with the least to spare.” ~Mike Mcintyre

The Place to Play Park project will be one for the books.  It hasn’t been a ton of large donors that have supported the project.  It has been small donations that have added up.  This tiny non-profit, Beau's Beautiful Blessings, with its volunteers are pulling off something the big charities never expected we could do.  It's because of people like Kelsey and Matt. And honestly, that is why it will be so special. 

Help me in thanking Matt and Kelsey for their very selfless act.  Kelsey, my kids love you so much and have such a special bond with you that can’t be explained.  I have always felt this way about you (even before this generous act).  We are lucky to have you in our lives and I know that amazing things lie ahead for you. You guys don’t want recognition or expect anything in return but I feel that it is important for your example to inspire others.   

“True kindness lies within the act of giving without the expectation of receiving anything in return.” 

Thursday, April 20, 2017

Bracelets for Beau

"People who make the world better for other people are some of the best people." ~Kid President

Last Thursday evening Andy and I received an email from Beau's (regular education) 3rd grade teacher at Hansen.  Page (Foss) asked if Andy and I would have time to come to her classroom as Beau's classmates had an idea they wanted to present to us.  All we knew was that the kids were inspired by Beau to do some sort of service project.  We set up an appointment to come to the school at 10 AM on Monday.

When Andy and I walked into the classroom, the students were gathered up front and seated on the floor and their power point type presentation was displayed on the white board.  You could tell they were excited/nervous to share their idea with us.  There were seats set aside for us and seated in chairs near the back of the classroom were Beau and his para Erin, looking excited to watch the presentation (I would later learn he had seen the presentation a time or two).

The presentation was opened by one of the students and about 6-7 of them gradually took turns speaking.  They were holding books that Mrs. Foss used as a part of her curriculum and they had pages marked.  The students read excerpts from them and explained how what they read made them think about certain real life scenarios.  We heard how the books that their teacher was using for their class all had emphasis on being kind to one another, being accepting of others, giving back to your community, etc.  Through all of these readings, these 9 year old third graders all came to one conclusion: the things they had been reading reminded them of Beau and of the inclusive park project. 

I was doing a pretty good job of holding it together but when Beau’s friend Drew got up to speak and a slide came on with a picture of Beau taken at school, smiling big, and on it was a list of all the amazing things about Beau that they loved – the tears started flowing.  I was able to chuckle a little as I heard Beau say “yay” with a little squeal from the back of the room and when we turned back to look he was smiling and pointing at his picture on the slide show. 

One of the little girls in his class had purchased some bracelets before where the money went towards various charities.  These kiddos, on their own, talked and wondered if they could make bracelets and then sell them to raise money for the inclusive playground.  They called their project, Bracelets for Beau.  They explained that they would make the bracelets before school and would stay in during recess so their educational time wouldn’t be affected.  The bracelets would sell for $1 and all the proceeds would go toward the inclusive park. They anxiously looked at Andy and I and wondered if this would be OK for them to do.  They had already pitched the idea and done their presentation to the principal and had gotten approval from administration. 

Their inspiration was their friend.  Their classmate.  Our son. 

I turned to Page and I wanted to confirm – had she had anything to do with their initial idea?  With tears in her eyes, she said no.  It was all the idea of Beau’s classmates/friends.  For her, it was a proud moment in teaching.  From the books she chose for her curriculum to the way she has made inclusion such a huge part of her classroom, she has every right to be proud.  Her leadership and her heart combined with third graders who have equally as much heart is proving to be a winning combination. 

We told those amazing kids that of course they could do this service project and that we would help them in whatever way we could.  Tomorrow night (Friday April 21st) Hansen Elementary will be holding their annual carnival.  They received approval from PTA to set up a table to sell $1 Bracelets for Beau.  This will be the kickoff for their service project and I would encourage anyone that is attending the carnival to stop by their booth and check out what these amazing kiddos are doing. 

I am so proud of these kids.  I know how scary it is to get up in front of an audience (no matter the size) and speak.  They spoke with such ease and conviction.  They completely understood the meaning behind the books they were reading.  Think about how selfless it is for them to give up a little extra time sleeping in the morning or giving up your recess time (especially this time of year) to make bracelets. 

At 9 years old, these kids get it.  I have always been more of an empathetic person but it wasn’t until I was faced with an intellectually disabled child that I realized what was truly important in life and just how selfless I could be.  If it wasn’t for Beau, I never would have started a non-profit and I never would have dreamed of working on an inclusive playground for my community.  

We could learn a lot from these young kids.  They don't see the differences like adults see them.   They knew they loved their friend and they knew they wanted to help build the playground he inspired in whatever way they could.  

Help these kids out.

Help support the Place to Play Park.

Buy Bracelets for Beau for $1 and all of the money goes directly to the park.  If you aren't attending the carnival please contact me and I can connect you with how to get some bracelets. 

More importantly, be inspired by the fact that an amazing group of 3rd grade friends did this because they loved Beau, their classmate and friend and they wanted to give back to their community. 

Just when I think his friends can't impress me any more than they already have, they do something like this.  

"You don't need a cape to be a hero.  You just need to care." ~ Kid President 

Tuesday, February 7, 2017

9 years

Disclaimer as you begin reading - this may get disjointed or I may ramble.  My apologies in advance. 

February 7, 2008.  Beau Hunter Weichers came into this world - 2 weeks late.  I guess it should have been an indication that things might always take a little longer with Beau.  It was a scary delivery.  It all seemed fine and I labored only a short period and delivered but when your baby, your first born, doesn't cry it's the most terrifying and quiet sound you've ever experienced.  I didn't hear the alarms, I vaguely remember the amazing NICU nurses rushing in, I don't remember my doctor stitching me up at all - I just remember repeatedly saying, "why isn't he crying?".  It wouldn't be the last time we thought we had lost our boy. 

Intuition would tell me several times during that first year that something was different about Beau.  I hated the routine check up appointments because Beau was never meeting their stupid milestones on their stupid charts.  He was a year old and couldn't crawl, let alone walk.  I went to PT with him and I would crawl over his body while holding his middle section up to keep him from falling.  He eventually got it and they discharged us from physical therapy. 

July 29, 2009 was the second time we thought we would lose our Beau Beau.  That night was when epilepsy entered our world.  It was the night my poor husband had to talk to the 9-1-1 operator while I held our limp baby.  You can be trained to know what to do in an emergency, as I was, however when your 17 month old child is the patient it throws you into a tailspin.  One thought I've never shared is the conversation I had with God that night.  Maybe I never shared it for fear that people would think I was crazy.  Beau was laying with his head near the hallway wall and as I laid my ear to his mouth and chest I focused on something on that wall - I can't tell you exactly what I saw but my focus was locked on the wall.  In my mind the words I remember were, if Beau doesn't make it, I won't make it either.  I wasn't sure how it would happen, but I knew I couldn't handle any more.  Life was rough at that time and "loss" was a common word for us.  Mentally, I felt done. Thankfully God wasn't going to let Beau's story end there. 

A couple days of testing and we had the diagnosis; partial agenesis of the corpus callosum as well as epilepsy and global developmental delay.  What does that mean for his future?  The answer: we don't know, every child, every brain, is different.  Will he walk, run, talk.....?  The answer: we don't know. 

Oh if I could have foreseen what the months and years that lie ahead would throw at us.  Let's face it  I'm glad I didn't see what was to come.  The first few months after the diagnosis were difficult.  Watching Beau attempt to crawl and seeing his arms just give out at any given moment and him landing flat on his face.  Having to hold him down to give him the horrible liquid phenobarb (Andy and I tasted it - way worse than Fireball by the way).  The therapy appointments, the doctors appointments, the specialists, the IQ testing, the medications, the sleepless nights, waiting for phone calls at work of an emergency with him, trips to the ER for staples/stitches from falling so often - and the list goes on.

What's amazing and something I pride myself on, is that I didn't completely fall apart.  I was certain I would, but I didn't.  I rallied.  I could sit and throw myself a pity party or maybe I could make a difference for other families like ours.  Beau's Beautiful Blessings came about as a way to do something constructive with the reality we were facing.  It was either take that sadness and whine and cry or take that energy and do something positive and beneficial. 

Looking back over the last 9 years we have been on a crazy roller coaster ride.  I was one person before July 29, 2009 and a different person after.  It was so hard.  So, so very hard and some days it still is.  Pill organizers, diapers, a communication device, therapies, drop down tantrums in the middle of a store - ongoing.  I never realized the impact a special needs child could have not only on us as parents but also on family members, community members, classmates and teachers.  He has taught me things you can't learn in any book.

Watching the bond he shares with his younger sister was something my heart needed.  From early on she babbled with Beau and he babbled right back.  They had their own language.  And today she is often the only one that can calm him when he is really upset and she knows his signs and grunts just as well as Andy and I do.  She will talk to you about his diagnosis.  At 4 years old, she is wise beyond her years, and God's other amazing gift to us. Beau has grown so much with the help of Delaney.

We had two different early birthday celebrations this weekend.  At each one, we only lit 1 candle.  In 9 years Beau has never been able to blow out his birthday candles.  This year that all changed and we weren't expecting it.  We waited 9 years and we are proud to say Beau blew out the birthday candle like a champ - no spitting either!  What seems small to others is huge in our world. 

Well Mr. Beau, your momma wants to wish you a very happy birthday.  I have read back through the letters I have written you over the years and they provide me with proof that you have come so far.  You crawled, you walked and you can run. While you aren't able to carry on conversations, I am grateful that you can say some very important words like momma, dada and Dee for Delaney.  While I won't say it has been the easiest 9 years, I'm grateful God chose you for us.  His unique creation is handsome, charming and full of joy for some of life's simplest things (like spending an afternoon at Menards to watch the forklifts or watching the cars go through the car wash or watching garage doors going up and down).  

Thank you for never giving up.  

Thank you for always fighting and trying, even when it would be easy to give up.  

Thank you for changing me into the person I am today.  

Thank you for inspiring people and inspiring ideas - like an inclusive playground :)

Happy 9th Birthday Beau.  I'm so lucky to be your mom. 

(PS - Plan on having a dance party tonight playing only your playlist; Miley Cyrus, Party in the USA, Carly Rae Jepsen, Call Me Maybe and LMFAO, Sexy and I Know It.)