Saturday, April 30, 2016

Did you kill it Daddy?

I was upstairs getting ready and I could here some faint whining... I thought it must be one of the neighbor kids so I just passed it off.

Then I heard more whining and I thought maybe Sister was outside and got hurt so I went in the back yard and there was no one there, then I went in the front yard and it was the same.

As I walked back to my room I noticed Sister was in her room and Baby was with her... so I went back to getting ready.

Then I tuned into the whining again and this time it seemed to be more definite and closer, "Mommyyyyyyyyyy! Help me!!"

I realized it was Brother.

I forgot he had been taking a shower so I thought maybe he had slipped or something so I ran down the stairs and he seemed fine physically, just emotionally upset.

He reluctantly pointed to his bathroom and my hearing was now acute and I heard water running...

"Oh no, he filled to the tub to far and it's overflowing," I thought in my head, but when I walked in the bathroom I could see the water was coming from the toilet... "???"

Brother started crying, "I tried to fix it. I'm sorry momma."

Then I noticed the toilet tank lid laying awkwardly on the floor and just above that was a big hole in the toilet tank and the water was flowing all over the floor!

I started throwing towels down and then realized I could shut the water off to the toilet.

Once I had the water under control I asked Brother what had happened.

He explained to me that the toilet wasn't flushing right so he took the lid off so he could fix it...

There was part of me that was so proud of him for problem solving, and the other part of me that was like, "Really? ... Really?" (sigh)

I'm not sure who taught him to lift the tank lid to fix the toilet, but they need a high five and a slap to the face... just saying...

Anyway, that was about 2 or 3 weeks ago.

We have not had a working toilet in the basement.

It has been missed.

It's the little things, people—the little things.

Anyway, yesterday Marc and I went toilet shopping for our date... I know you're all jealous... I guess it was just one of those crappy dates.... Ha! Ha! Ah! I'm killing it today!


So we made it the husband and wife project today to take the old toilet out and put the new one in.

I know, it doesn't sound like a good time, but it was actually great and we laughed and teased and worked together. I'd have to say that I wouldn't mind putting in another toilet with my hubby... well, maybe a different project would work too.

Anyway, toward the end of getting the old toilet removed we came to the gross part, at least I thought so, where there is a wax seal at the bottom of the toilet that keeps water from leaking out.

The thing about that wax ring is that it gets well-used.

At least this one looked like it.

I wish I would have taken a picture of it... but it was black and sloppy and just nasty looking.

I had come upstairs for something while Marc was working on that part and he had come upstairs to throw it all away.

Sister say the used, old, wax toilet seal in her dad's hand and her sensory defensiveness kicked in and she was immediately disgusted by its looks, "Dad!!! What is that!" She queried with panic on her face.

"It's a seal, sweetie!"

"Aaaaaahhhh!!!! No!! No!!! Daddy, No!"

Both Marc and I rolled our eyes as we are so used to Sister over-reacting to EVERYTHING, and we told her to calm down it was, "just a seal!"

She kept the panicked look on her face, tried to calm herself enough to speak without screaming and asked, "Did you kill it Daddy?"


I calmly turned to her after I let it process for a bit, "Not an animal seal. It's not and animal sweetie, not a seal like an otter. It's a seal for the toilet that keeps out the water."


Panic removed.

She was able to calmly go on with her yearbook reading and I looked at Marc and we both tried not to chuckle too loudly.

I'd be scared too if my dad had taken out a dead seal from my toilet...

Oh, life is funny!

Wednesday, April 27, 2016

There is Beauty All Around

I got to see some very beautiful things today.

It was so wonderful because not only were all the tulips in bloom and the scent of flowers swam through the air, but I was able to spend time with my friend.

I've never gone shooting with a friend... at least not with a camera anyway.

I am amazed at God's creations.

It truly shows his love for us.

He wants us to be surrounded by beauty, seek out beauty and capture it for everyone to enjoy.

That makes me feel pretty special.

But, I also love realizing the simple beauty...

The simple beauty of watching my daughter color in her coloring book while she waits for dinner to be ready.

There is beauty all around.

You have to look for it, seek it, earnestly desire to find it.

Tuesday, April 26, 2016

Better Than Prom!!

Last Saturday night seemed to be Prom for the entire world!

OK, maybe I have a small world, but prom pictures were flying up all over Facebook and Instagram.

I can't even explain to you how extremely excited that I was able to post a picture of our handsome son at prom.

I mean just look at this guy!

I honestly didn't think that was going to happen... at least not this year.

Brother's teacher is pretty much the most amazing person ever and had arranged all the events leading up to prom and getting to prom and it was a total success for all of Brother's class. Some of the guys even took dates. In the words of one of Brother's friends, "I had to ask someone else this time because I want to give everyone the chance to date me."

I love that he said that.

We typically look at kids with special needs and think how lucky they are to hang out with "us" and I love seeing those with special needs seeing life as, "you get to hang out with 'me.'" Not in a cocky way, nope, these kids are so sweet they honestly couldn't be conceded, just genuine.

Brother's friends tried hard to talk him in asking a girl out to Prom, but he wasn't having it, and I was so happy that he was willing to go, that I didn't want to push it any further.

Mrs. G said she could tell that Brother was kind of resenting his reluctance to ask a date as he looked around to see that everyone else had a certain someone to dance with. Luckily, one of his friends was willing to share his date and she held the hand of each boy as they danced.

There are so many wonderful people in this world.

Sometimes we get so caught up in all the dumb things going on and forget to revel in the beauty of human nature that surrounds us every day.

You wanna know something that was even bigger than prom?

Do you remember me telling you about my kids visiting the dentist last week?

Well, Brother did so well at that visit (a complete 180 from previous times) that Brother decided on his own that he was willing to try to be good for the dentist when he got his cavities worked on the following week. He really didn't like being put under anesthesia for the last dental work that needed to be done so he wanted to be brave.

I took him to the dentist for the work to be done yesterday in the late morning.

I had to pick him up from school and he wasn't too happy about going, in fact he was quite terrified.

He was still showing his anxiety as we drove, as I parked the car and as we waited in the lobby.

I had Baby with us as she had not gone to school just yet, so Marc was going to stop by to take her to school at the right time.

They called Brother's name and he panicked and I had to drag/carry/push/wrangle him into the room and the dental chair.

It wasn't pretty.

I don't know that I handled it really well.

I was frustrated because we had talked about this, prepared for it and it was even his decision to do it this way. I was calm and everything, I think I just lost hope too soon. I just "knew" we were going to be making another appointment for the hospital to have him get his dental work done under anesthesia.

Then Marc came to get Baby.

I told Brother, who was still quite nervous, that I needed to take Baby to Marc so that she could go to school. He nervously agreed to sit there alone with the dentist's assistant while I ran her out.

When I came back into the lobby, I could hear Brother talking quite happily in the other room.

No screaming, yelling and he didn't come sprinting out of the room so I felt impressed to wait quietly in the lobby. I let the assistants know that I was there if he needed me, but thought that maybe he would do better without me there.

The dentist came half-way through and told me how impressed he was with Brother and how he was able to talk him through the procedure of filling the easiest of his three cavities, take baby steps, and he was able to calm himself. He asked what I thought about him doing the other two that needed to be done still and I said, "You know what, lets end on a happy note and we'll just make an appointment for another time. I'm so proud of how well, he's done I don't want to push him too far."

So we went back to tell Brother the good news that we were done for the day and that we would work on the other ones another time. Brother shook his head "no" and let us know that he wanted to just get it all done now.

I was so surprised and proud of him.

This, by far, is a huge leap forward for Brother!

I mean prom was a huge social and sensory experience, but getting work done at the dentist is overwhelming socially, emotionally, physically and for sensory.

He was taking this like a champ.

I almost cried I was so proud of him.

I asked if he wanted me to stay and he told me to go and grabbed his dental assistant's blue-gloved hand and settled in, ready for the next step.

It tugged at my heart strings.

When your kids with special needs are just small you really have no idea what the future holds.

I know that often I think it can't get any better and will only get harder, but Brother proved me wrong yesterday.

He was alone in the dentists office, willingly getting the work done that was needed.

It was a miracle, really.

If Brother's previous dentists were reading this they would quickly testify to that, I don't think they even believed he would get to this point of staying in the chair willingly getting the work done.

I do have to say, though, that Dr. Shepherd has a real way with kids like Brother and I was truly impressed at his willingness to try to give Brother the benefit of the doubt.

I snuck a few pictures of Brother getting his dental work done.

Look at him holding the assistant's hand. So precious. That's usually my job to give him comfort by holding his hand... maybe prom taught him a few moves to his benefit (ha ha)

This, indeed, was bigger than Prom and it almost looks like he even had a date for this one!

Sunday, April 24, 2016

Humbly Proud?

Because I feel more complete when I have time to write in my journal, here I am...

I told Marc that I'd be up soon and here I am blogging away.

I think he'll understand.

I'll make it quick since he's waiting for me.

I just have to express my gratitude to my Heavenly Father today for all the blessings in my life.

The biggest one I just have to mention before ending is that


He didn't take a date or anything, but he went with his group from his Special Needs Class and some of them took dates and he just went for the fun of it.

It wasn't easy getting him ready or motivated to get ready, but he did it.

His teacher was sweet enough to pick him up because he didn't want me to take him.

She was so great and texted me pictures throughout the night since I couldn't be there.

He gets the "looks" from his daddy

I couldn't be there.

I was in my play.

I was happy to be in my play, but I felt guilty for being there at the same time that he was experiencing a big stepping stone in his life... and mine.

Mrs. G also sent a video of him dancing his heart out when we were about at intermission and I was so excited to show all my theater friends while my eyes welled up with happy/thankful tears.

I'm so proud.

I'm so humbled.

I know, at the same time, strange.

It's a mom thing.

Thursday, April 21, 2016

Piggy at the Dentist

The dentist is always an interesting experience with our kids.

It always has been.

I'm pretty good at laying down on them in the dental chair whilst holding their arms under me and telling them "it will all be OK."

I'm sure we are quite a site.

Brother has gotten too big for this technique and last year was the first time we had him sedated for dental work.

We have a great pediatric dentist who is so good to work with Brother and thankfully, Brother has started to get used to his office, him, and his staff so he is actually able to sit through a cleaning without my "assistance." I had to record his last visit because I was so impressed. The one thing I wish I would have gotten was his loudly teasing Dr. Shephard, "You put me out Mister!! That was you!" he yelled, laughing and pointing his finger. I'm beyond grateful that he has a sense of humor about that part.

Here's the little bits I got:

Sister has always done fairly well at the dentist so we have just been taking her to a regular one, but she has also never had a cavity so she hasn't needed any major dental work.

Well, the last visit they found a cavity and they were unsure whether they could do the work on her and suggested we take her to our pediatric dentist that Baby and Brother go to.

So we did.

The just checked her so they could get to know her and how they would need to try to approach the work to be done. We have scheduled for her little cavity to be worked on there in the office since it is an easy one. I'll hope for the best.

In the chair he was so cute, looking all round-cheeked and happy as she watched her selection of "Property Brothers" on NETFLIX on the TV above her. (She LOVES that show and I laugh whenever I here her pretending in her room to give people price quotes and talk them into going with the natural wood floorings--it's a hoot!)

I took a couple of pictures of her too.

She's lost a lot of teeth lately... lots of room to work! and a poor tooth fairy!

You want to know the MOST impressive thing about that visit was actually the fact that all 3 kids were there with me for her appointment!!! All three! Brother sat in the waiting room with his headphones (I'm sure he made for an entertaining sight as he waves his arms in the air to the beat of his Shania Twain). Baby sat next to me watching Sister so I was really happy about that knowing that Baby's dental checkup was the following morning.

Then the morning of Baby's appointment came.

I was elated when upon walking in she cheerfully went with the assistant to her chair, laid down on it and picked a movie.

I was kind of in disbelief as I typically have to wrestle her to the chair, usually bumping my forehead on their light or X-ray machine in the process.

She just got up, laid down, smiled and said, "Barbie."

She had seen her sister do this and it was all old hat to her... or so it seemed.

I think she must have zoned out for the part where they were cleaning Sister's teeth because as soon as the spinner toothbrush was turned on she began to panic.

The dental assistant was a gem and helped comfort Baby by letting her touch the toothbrush and taste the toothpaste and all that stuff. Baby seemed fine until it went into her mouth.

That is when the light swinging and X-ray bumping ensued.

I'm telling you, I can't get through a day with our kids without some kind of personal damage.

Tee hee!

The good news is, this was the first dental visit where Baby actually got some of her teeth cleaned!

With my holding-down skills the dentist was able to scrape the tarter from her teeth and observe enough to tell me she's looking good.

After the dentist was done and I was holding Baby to comfort her I started joking with Dr. Shephard as to the great workout I just had as I wiped the sweat from my forehead. I am sure that in those circumstances the sweat isn't all exertion, but a little bit of embarrassment mixed in.

Not embarrassment of my child... no, no, we are passed that at this point, I've done this long enough, embarrassment that I might look a little silly wrestling my kid who's one fourth my size as if she were a 200 pound greased piggy!

Sorry, I forgot to take pictures of Baby at the dentist, I should have at least thought to get one at the beginning.

Wednesday, April 20, 2016

Belated Spring Break

We actually had our Spring Break right on time, I am just now getting around to posting about it!

It all started off with a bang when my sister, Kirsten, had her baby 2 weeks early!

Surprised, but so excited I went to visit and take pictures the day she was born:

The first question she asked me after I saw her was, "So, what do you think? Do you think she has Fragile X Syndrome?"

It's crazy that we even have to ask that question each time we sisters bring a new little one into the world. (To learn more about how Fragile X is passed on you can read HERE.)

I had to honestly tell her that I had no idea this time. The only thing I could tell her for sure was that she is adorable and I admire her for having the faith to have another baby.

We are excited that baby Liz made her appearance just in time for our brother and his family coming to visit from Illinois during our Spring Break. Having them here all through Spring Break was also a big help in distracting Sister that there was no school for a week.

We even got to celebrate Easter with them all (even though it was late) and have our traditional Easter Egg hunt at Jessie's:

Sister was REALLY into it and we had to make her give some of her eggs away... she was so proud!

Baby actually seemed to be getting the hang of it this year.

Last year Jessie started a treasure hunt at the Easter Party and our brother, Aaron, was so good at writing the clues that he was in charge of it again this year.

We had to caption the dad's "socializing" Tee hee!

Another highlight of that evening was when my siblings, my parents and I gathered around Jessie's piano to sing the song, "Gethsemane." It brought tears to my eyes and makes my heart happy.

Most of us slept over so that we could have as much time together as possible.

It was so fun to see all the girl cousins playing together and I was actually able to sneak a picture of when they were playing school:

The highlight of that night, though, was when LittleMr, Daniel's 3rd and age 3 (almost 4?) was so excited about sleeping out in the trailer with all the boy cousins that he could hardly contain his excitement. He was so excited he started running the wrong way when I walked him outside, it gave me a good chuckle.

But my heart was also happy as my kids got to have "regular" peer time with their cousins—Brother sleeping out in the trailer with the boys, Sister and Baby playing school and all sleeping in one room—it makes me so happy that my family is so accepting of our kids and love them regardless of the Fragile X gene or not!

We always try to get in as much time with Daniel and his family as we possibly can so we snuck more activities in here and there. I didn't get as much time as I would have liked since I was involved with my play rehearsal still.

The day after our big party we met up with Daniel and the fam to go swimming.

The picture doesn't really show it, but they had a great time and even last a little over an entire hour!!!

My mom always goes all out and makes all her specialty foods while Daniel is here. One of the days she made us her homemade chicken noodle soup. She makes the noodles like her mom did. I got thinking how I would have loved to have a picture of my grandma making one of her specialties in the kitchen, so I grabbed a few pictures of my mom.

I'm sure these will be treasured images.

I'm all of a sudden all nostalgic about my parents and wanting to capture everything about my parents.

It's either because they are getting older before my very eyes, or the fact that my dad got really, really sick and it gave me a bit of a scare/reality check.

We're all getting older.

I find myself treasuring the little moments even more than I used to and wanting to make those moments last as long as possible.

I am sure that is why we are so happy when our family is ALL together at the same time and we get to make those memories as a whole.

Tuesday, April 19, 2016

One for the Board

Our kids...

Oh the joy and simultaneous stress they bring.

I've had to learn to laugh so that I don't take things too seriously...

You know, like when sister asks me if I remember "Bob" that I met last year and if I remember what his son's name was...

(blank stare)

After some pointless arguing my mind begins to register that what she meant to ask is if I remember if "Rob" that I met this morning has a son and if so, what was his son's name.

Or there's the times that you walk in to Baby's room and she is crying such big crocodile tears and huddling in her favorite blanket that you think she may have lost her favorite toy or stubbed her toe, but after cuddling her for several minutes you realize that she is crying because you yelled at the dog to stop barking about 30 minutes prior and it must have startled her.

Then there's Brother who will sing his heart out in the front yard for all passersby to see and hear, but if you ask him to get ready for the school choir concert he is quickly escalated to full anxiety defense systems.


Sometimes Sister will come up to me and just hug and kiss me and tell me over and over again in between giggles that she loves me.

Brother has learned to say to me, "I just can't do this right now." It melts my heart that he is learning to communicate how he feels.

Baby says "Pediasure" to me and I'll reply "just a second" and she will bring me her cup and the can because she knows I get sidetracked easily and she might as well help me out.

We went bowling and out to eat with Marc's parents on a Saturday and I was so impressed with how well behaved they were at the restaurant and even ate most of their food! We all went bowling afterwards and had such a memorable time.

We may have only last one game, but the point was we were actually out as a family... having fun.

Yes, I spent much of the last bit chasing Baby around and making sure she didn't run into anybody's bowling balls or trip over their shoes, but we were there as a family!

I'm telling you these things for two reasons:

  1. Celebrate everything your child accomplishes, big or small.

  • Now I am not talking big Pinterest-Mom rewards or parties, I'm just talking about acknowledgement. A simple "Wow!" "Good job!" "You're amazing!" "I love you!" or just a hug or a kiss on the forehead.
It doesn't take much more than that to show you notice their accomplishments. Remember, though, that you have to find out what works for your individual kid—Sister does better with verbal and physical reassurance, Brother just needs verbal mostly and Baby is more of a sensory/physical (squish, firm hug, snuggle) needer.

Too often we expect so much of our children that we forget how amazing it is that they are doing what they are doing.

I fear Marc and I are hyper-aware of how often little things go unnoticed when parents don't have children with special needs because it is "typical" or "developmentally" on cue to what they are age-appropriate for.

  1. Be content with who you have.

  • I don't mean be lackadaisical or complacent, but not wishing your child was like some one else's kid. Instead be encouraging and motivating to help them reach THEIR fullest potential and not YOUR biggest dream.

If your 6-year-old is going potty on their own, but you still have to help them wipe... thank your lucky stars.

If your 10-year-old is able to be talked to about puberty and growing up without going into complete and total nuclear melt-down panic then you are blessed.

If your 16-year-old actually tolerates, initiates or encourages friend or neighbor interaction don't be upset that their room is a little messy—they are making memories with real live people... that's a good thing.

If you're a parent — stay strong, celebrate the small stuff, laugh more, love more, and live in the moment.

share, pin or print

Tuesday, April 12, 2016

Self-doubt and Enough

I'm apologizing ahead of time for the blunt honesty that is about to come in this post.

If you are uncomfortable with complete honesty (and basically, whining) even if it exposes faults then you might just want to skip through and look at the pictures...

You have been warned:

Do you ever doubt yourself?

I'm in this rut where I just don't think I am good at anything that I am doing right now.

I'm not sure what it is exactly, but I'm just in that mode of scrapping everything and starting over.

I've been doing graphic design for 20 years now and for the first time in years I have actually slowed down in work. I hate even admitting that here, publicly, for you all to see, but it's the truth.

I don't know if I've lost my edge or if it's just because I am not good at all the social media stuff that needs to be done to promote my work to new clients. I mean, I have been doing this for 20 years... most of my clients have either moved on to other ventures, died or found a cheaper designer so there's not much word of mouth advertising like there used to be.

I started about 5 years ago down the path of being a photographer and I was so excited when I started getting my first paid gigs and was able to actually say I was a professional photographer.

Right when I was feeling like I was really getting ahead of the game my camera broke and I had nothing to shoot with and no money to buy a new one.

Then some sweet people, whom I still do not know who they were, brought a gift of a camera and lenses that Christmas and I vowed that because of that act of generosity that I would continue to pay it forward and make it possible to for many who couldn't afford family photos to have them at a low cost.

I have also strived to do a lot of donation photography for those who couldn't afford it at all or for charity work.

After almost 4 years of doing this I am beginning to feel like I'm not looked at by others as a good photographer, but rather a cheap, decent one.

That hurts.

I've worked hard to get where I am.

Classes, money invested that I don't make back because of donating so many sessions, time, time away from my family, miles traveled, equipment purchased, programs upgraded... etc.

I tried really hard to get a grip on doing a great job at being the leader of the Fragile X Association of Utah and I have failed miserably at that while simultaneously giving up on the one fundraiser I worked so hard to start. And none of it is really missed, it seems, so I see no need to go through all the stress, hard work, dedication, and commitment it all needs.

I wanted to start a blog and later a YouTube channel to help raise awareness about Fragile X Syndrome and give hope to families who have children with special needs that there is laughter, fun, memories and joy in all of it. I think the most I have ever reached were probably the extent of my extended family, and they already know our situation.

I want to be an amazing mom who stays on top of everything and spends all my free time with my kids and making their life better.

But, sometimes, I just sit and stare at the wall because I don't even now where to begin—Baby's behavior plan, Sister's medicine changes, Brother's picture schedule to encourage him to go to Prom, Baby's potty training predicament, Sister's anxieties, Brother's unwillingness to be social or all three of their picture schedules.

I want to be able to make money to help my husband with all the financial stress that comes with our situation but the three main things I am doing seem to be falling apart before my eyes.

I am so confused as to how I am blessed with so many abilities and talents, yet none of them seem to be really helping our situation.

It's so discouraging.

The thought of working outside the home makes me anxious and makes me wonder if I'd be even further from meeting our children's needs.

I honestly don't want anyone to comment about this post.

I'm not asking for sympathy or kind words.

I just want to be real.

I am also realizing that I am glad I am writing this down so that as I wrote it I could think back to all the things I have succeeded at.

I do hope that my talents have at least blessed others lives even if they don't always seem to bless mine.

I have to remember that what I have to offer is enough for the Lord.

And that has to be enough.

I have to remember that I do all that I can and that, by His grace, I am enough.

It brings tears to my eyes to type that out loud, but I have to be OK with being enough.

I may not be the best at the things that I do.

I am enough.

That is OK.

Not easy, but OK.

And I still may try a new career move...

just sayin'...

Photo credit Chelsea Reimschiissel 2014