Saturday, November 22, 2014

Been to Bean?

So we have this really cool museum here in Utah on BYU campus.

It's called the Monte L. Bean Life Science Museum.

I've always known it as the "Bean Museum."

I remember as a kid my dad took us all there a few times. I remember how amazed I was by all the animals there, especially the white tiger... that was always the best animal to see there because it was so rare. The best part of being there though, was to be with my dad.

He had rough, calloused hands from working on the farm and he would grab my tiny hand into his, lean down and tell me what he new about certain animals, or a story about that animal or explained to me how they had been preserved. I honestly could never tell you all the things he told me... I may not have been really listening, or maybe it was just all over my head (he tends to do that).

I just remember how nice it was to spend time with Daddy.

That was the best part.

Marc and I have been a bit gun shy to do anything really adventurous with the kids since our crazy time in the Tetons last summer. Every time we try an outing we are reminded of how hard and un-normal our family is.

We had a Monday with Marc home from work and the kids home from school on the same day. We thought this would be a great time to try another family outing.

Sister had mentioned the Bean Museum a few times so we thought we would give that a try.

Thirty minutes before leaving, Brother whined for solid the entire half hour about not wanting to go and wanting to stay home. Sister cried because he was crying and so she had to make sure to get mad at him, which made her mad at us, which started up her anxiety. Baby tried to argue but she's still small enough to pick up and carry to the car even if she is protesting.

For the full 13 minutes it took us to get there, I believe Marc and I had nerve endings that were dangling out the rolled-up windows flapping in the wind and knocking sensitively up against the car with a few of them being twisted and ripped by the small hands placed behind us as the screaming and complaining was non-stop.

It was awful.

It was relentless.

It was our family.

We got into the parking lot and the anxieties began to flurry about the car like bright lightening bugs on crack! Sister decided she didn't want to be at the museum and was screaming her demands to leave. Brother was yelling at Sister to stop yelling and Baby was crying in response to all the noise.

I know Marc and I thought about just bagging the entire idea and driving straight back home where Brother could watch TV, Sister could talk to herself while lining things up in her room and Baby could rehearse her "My Little Pony" episodes word for word while playing with her toys.

"NO!" we thought in our heads (in unison, even, I think), we have got to get our kids out and about and keep them social and not hide away where we are safe and comfortable.

Marc and I were becoming weary of safe and comfortable... we felt cooped up and trapped in our house and refused to allow ourselves and our children to become prisoners of Fragile X Syndrome.

So Marc took one girl, I took the other and Brother was able to get into the museum safely without us having to hold his hand or drag him.

We were in.

We did it.

Now what?

Brother went into flight mode as he tried to hide in a corner of the gift shop next to the door way we had just entered while Sister was still screaming at the top of her lungs that she wanted to go home and Baby ran off somewhere and I ran after her while Marc stayed back to calm Sister.

By the time we all had gathered together in the gift shop we allowed our kids to gain some composure while getting excited about all the toys, magnets and books there.

After about 20 minutes we were able to venture out to see the animals.

It was going great!

I mean as great as it can with our family... we still had to run around, gathering, monitoring and reprimanding just as we would for three-year-old triplets...

Our "easy" isn't really even easy.

But the kids were smiling and excited.

Yes, you could see their anxiety, but they were keeping it under control so that they could enjoy seeing the displays that were so intriguing to them.

We even got some pictures:




This was exciting for the kids to pet the tiger that the staff was bringing around.
There were moments like these when I listened to Marc talk to the kids about the different animals that took me back to a time when I came here with my dad.



Brother was pretty excited about the zebra

Sister was fearfully intrigued by this display, was able to find some safety in her Daddy's arms.

I look at this picture now and wonder if that's what me
and my dad looked like as he held my hand walking through the museum.

I hope Sister remembers more of these kind of moments than the moments that came shortly after this picture was taken...

It wasn't good.

Sister just started to have a major panic attack. Her anxiety had caught up to her and had taken control.

I am sure everyone heard her fears as she screamed about what stairway we were taking, or how we were getting there.

She was hysterical and hard to calm down as she started to act as if she had been trapped.

Marc and I had to split up and take kids as we could handle them and get them out to the car.

It was like gathering little frightened piglets and I am surprised we succeeded, but we finally got all five of us in the car.

Marc and I sat there trying to stay calm while all 3 kids were complaining in the back of the car and, Sister, especially was still having huge anxiety issues.

We had promised the kids we would go to a park that day too.

There was 90% of our brains that were thinking we should just skip the park and then the small 10% left over was being reminded that this was part of what we had explained to them would happen that day so we needed to follow through for the sake of sticking with the schedule. Of course, too, we had to let Fragile X know that it hadn't beaten us down.

Sister screamed and thrashed the entire drive to the park.

Then she saw the park.

It was as if there had been no panic in her at all when we pulled into the parking lot to see the playground.

It was instant excitement for all the kids.

The excitement of the park had melted away the panic of getting there.



Marc got in there and played with the kids.



















When they were done at the park, there was no doubt about it.

They were done.

Monday, November 17, 2014

Moving Forward and Holding Back?

It's a really tough thing to have a diagnosis for your kids that, in a way, says, "Don't expect much."

I think it is a human thing we do...

prepare ourselves for the worst, just in case...

I mean, we don't want to get our hopes up so high and then be let down.

But we can't do that.

We have to have high hopes... (ha, the song just came into my head... here, listen...)

After my initial shock and freak out phase of feeling like life as I had "planned" was completely over with the diagnosis of Fragile X, I thought I had been very positive. I didn't want to hold our kids back from things and wanted them to try it all if they wanted to.

When they are young it is fairly easy to get over their failures and make an enormous "to do" of their successes... even if all you're celebrating may seem so insignificant to others.

When they get older we seem to expect less because of peer pressure, tougher subjects in school, and just the whole adventure growing up and maturing... what a doozie!

Brother came home a while ago with a homework assignment from school in his FOODS class. (Yes, he is in FOODS and he loves it!) I read over the worksheet and it was actually a challenge of sorts, it wasn't just a worksheet to be filled out but he was actually assigned to make a meal for the family and then put a picture of it on INSTAGRAM. He had filled it out at school that he wanted to make steak and potatoes.

Well, at first I was like, ummm.... he has Fragile X... I don't know if he can make dinner for the family without hurting himself, burning something, or licking his fingers and then serving up his dish... AND then, the hopeful mom in me said, "Why not?"

So, a little hesitant, we went to work.


poking holes in the potatoes so they don't explode in the microwave

marinating the steak while the potatoes are cooking
seasoning with his favorite seasoning — Montreal Steak Seasoning (we by it in bulk at Costco... no joke.)

helping daddy get on more seasoning before the barbecue got fired up, he even turned the steaks with Marc's help
He set the table and everything! (Don't worry, we all got our own utensils)

When your child/ren get a mental impairment diagnosis, you worry that the only time they are going to get laughs is when they are being laughed at and you don't think too hard about whether or not they will have a sense of humor to make others laugh with them.


And then they start to have their own personality and take on the funnies in life. Brother loves to make this puppy dog face to try to get what he wants... sometimes it works.

When your child gets the diagnosis of FXS you don't even think far ahead enough of what responsibilities they will be able to take on, rather you think of all the extra responsibilities you will have in caring for them 24/7.

Then, one day, you have some awesome freinds who decide to let our specially challenged son have the opportunity to be responsible by taking care of their dogs while they were out for the weekend.












It was then that I decided he could take on a big responsibility like having a dog... He's been wanting one for 10 years solid. We have always felt we couldn't handle a new dog and 3 children with special needs so we continued to say "no" when he or Sister begged for a puppy.

But for the last several months I have felt strongly about getting a dog for the kids. But, how could I take on the responsibility of a dog and all the other things I do? So I prayed often that I would be able to find the perfect dog for our family: one that would already be house trained, playful but willing to sit and be held and cuddled, small, non-shedding, doesn't bark (a lot), smart and easy to teach, and would be a therapy to our kids. Not much. Just the perfect dog...

Especially if I knew I was going to be taking care of it and the kids!

Then after seeing Brother take care of these two dogs for a day I just knew he could do it, with a little help.

A few weeks after his dog sitting experience I saw that one of my really good friends was needing to get rid of her dog because of her work schedule.

I had a good feeling about it, so without talking to Marc or anything I just decided to have him come on a week trial to see if it would work out.

It took about 2 days for me to realize that he was exactly what I had been asking Heavenly Father to bless us with.


He's a Snau Tzu, a cross between a Shnauzer and a Shi Tzu.

He has an underbite... hee hee!

We wear him out everyday

He sleeps on my lap while I work.

Brother takes him for a walk everyday (getting a bit shorter now that it's cold), picks up the poop, takes him out to potty, feeds him and plays with him.

Everyone loves him.

But, it is because of Brother's ability to take care of him that we are able to keep him. Pretty amazing when, in the first place, I was worried about having to do it all myself.

Brother continues to amaze me.

Little things like taking the arils out of a pomegranate when his fine motor skills struggle so much.



Working on getting himself ready for bed without help.



Being able to tell me when he needs/wants his hair cut because he decided he wants a new style.


I don't have any pictures of one of the greatest things he has accomplished and that is being in the advanced choir, Bravos, at his Junior High School!

We went to his first concert and I wanted to cry with pride, happiness and a little bit of embarrassment that I was worried he would never be able to do something like that.

He sang EVERY word on tune with emotion and excitement! He was amazing!

I couldn't be prouder!

Then, a few days ago, I was told by a friend of his that someone in his choir class said something to the effect of, "Does he even sing? I think he just holds [our choir] back."

When his friend told me this I tried not to cry. I didn't want her to know how much those words stung.

This person in his choir class, one of his peers, sees what I saw when Brother first got his diagnosis of Fragile X, "He can't do as good as others because he has a mental disability."

Oh, how wrong I was.

And, sweetheart (the person in his class who thinks less of him), sweet, sweet girl (I say that so I don't call her the nasty names that I want to), my son may have a brain that doesn't help him understand all the things you do, but his heart, right now, knows more that your heart is letting in. I hope, sweet girl, that you, one day, have a big heart full of love and understanding, and I do hope that it isn't learned through your stupidity, but rather through your acceptance and kindness to all types of people in your life.

Does Brother sing?

You bet he does!

Does he hold you back?

Only you can do that to yourself.

I hope you'll see my son for who he really is someday.

Friday, November 14, 2014

Potty break!

I can't believe I have written nothing in my blog for so long.

What is my problem?

I LOVE writing things down, sharing pictures and thoughts, insights and triumphs, highs and lows.

I have been so overwhelmed with the Parade of Pumpkins, design work, photography, on top of my mother and wife duties that I just couldn't bring myself to steal time for my own reprise.

Let me just give a big sigh...


"SIGH!"


I think that I have already forgotten what I had learned when I did the play last month, and that is, "I really need to take time for myself. And it I can't count sitting on the toilet."

Do you ever seriously get so overwhelmed, so busy, that taking a potty break even seems to get in the way?

Is that just me?

Well, I think that not taking a potty break once in a while is just a bunch of crap!

Ha!

Truly, though, we need breaks!

I need a break!

I need to just write my thoughts.

Share them with you.

And hope they make you smile.

I really do want to play catch up on all my journaling, but, I still don't have the time to do that.

I was just sitting here with a moment between jobs and decided to take a "potty break."

Oh, and I am excited to introduce you to the newest member of our family:



Ranger!

Thursday, October 23, 2014

Getting From A to C by Way of B

I know.

Not exactly a one step pathway is it?

Does it surprise you, though, that I would have to get from point A to point C by taking a jaunt to B?

It shouldn't.

It shouldn't surprise me either...

but, it still does.

(Flash back clouds and music inserted here.)

Since we moved here 2 1/2 years ago, Sister had been with the same teacher for 2 years. What a blessing. Her teacher, Ms. O, finally was really understanding Sister, Fragile X and all of the combination of the two. It was great. There was no more explaining Fragile X Syndrome to her teacher and explaining how it affects Sister and blah, blah, blah...

That's what it feels like sometimes when I have to tell about Fragile X over and over and over and over again.

Sister was comfortable with Ms. O, I was comfortable with the comfort level of Sister and Ms. O, and it was starting to get a little bit easier knowing that Ms. O just understood Sister. It was so nice not to have to "blah, blah, blah."

Then at the end of May this year Sister's teacher announced that she was quitting!

At the school race this past spring.


What!?

"No!!!" I cried in my head... OK, it really was out loud... several times... to my friends, neighbors and family.

I don't want to go through this whole thing again when things were going so swimmingly!

Aaargh!

I pouted most of the summer.

Sister pouted on the days she was not in summer school.

That made me pout more. Which made me feel like we had been betrayed by Ms. O. How could she do this to us, couldn't she have chosen another career choice after her prized pupil had graduated from her class?

Then, a few weeks before this school year started, I got a phone call from her new teacher, Dr. H.

Dr?

Hmm.

I've had to teach a lot of doctors what FXS is and I was ready to explain it all to this one too.

Me: "Hi, Dr. H. This is [Sister's] mom, Rachael. I am returning your call..."

Dr. H: "Yes, I was just wanting to get to know Sister better so that I can be better prepared for this school year."

Me: (in my head) Oh great he's already been informed about Sister and wants to know what tactics to use for each behavior and situation... ugh! I'm not in the mood to explain FXS today... (out loud) "Well, she has what's called Fragile X Syndrome... have you ever heard of that?"

Before he answers I have my response formulated and I am ready to go into my educate mode.

But....

Dr. H: "Yes. I know what Fragile X Syndrome is."

Me: (in my head) Ya, you probably remember the 5 minute blurb you read about in your doctor text book, let me broaden your horizons... "Oh, really. That's something I don't hear very often! How have you heard about Fragile X Syndrome?"

Dr. H: "I worked with Dr. Randi Hagerman for a few years at the M.I.N.D. Institute in Sacramento."

Me: (in my head) What? Is this guy for real? Did he just say what only my dreams could imagine? (out loud) "What?!! For real? You worked with Dr. Randi Hagerman? This is like a dream come true!"

Dr. Randi Hagerman is one of the most known and most knowledgable doctors in the world of Fragile X and is HIGHLY respected as an advocate and clinician for Fragile X Syndrome. I couldn't have thought of a better situation myself!

In talking with Dr. H further I discovered that he and his wife were on the research team that worked a lot in studying the affects of FXS on girls.

Seriously?

Here was this trial at the beginning of the summer that brought on anxiety and a little bit of anger and I couldn't understand why God just couldn't let me have one easy summer with Sister by allowing her to look forward to being with her favorite, Ms. O after summer break.

I just couldn't understand what the purpose of the trial was and got frustrated with God.

I wanted and easy A to C route.

Heavenly Father wanted me to appreciate the journey and the small trial made the little coincidence of Dr. H falling into Sister's life, look more like a miracle.



Now to another situation, where, I pretty much left things in the Lord's hands and said, "Hey, Heavenly Father (we're close like that... I just say "hey" and he's like "wassup?") I want to be in a play. My back is bad, my life is busy, and my kids are needy, but I really need something for myself. I am just going to put this in your hands and if I make it that will give me the faith that it's all going to work out."

I made it into the play, as you know.

Photo by Mark Philbrick, Courtesy of Scera

I thought this would be my miraculous recovery story of how my back was doing so much better and life at home would be nearly perfect.

Two weeks into play rehearsal and my back started experiencing pain that I have never felt before. I was suffering physically, mentally and emotionally because of it.

Again, I complained to the Lord and asked him why he would give me the joy of the play and then make me suffer through it.

I was so mad and frustrated and confused.

But, I found so much joy in the play that I just kept getting through it. I had scheduled surgery to be done after the last night of the play and I had received a post-surgery back brace to help me through the pain.

The pain was getting so bad that I became desperate that I begrudgingly went to a alternative medicine doctor that my cousin recommended.

One "adjustment" (I call him the witch doctor) and some vitamin K for my restless leg and 2 days later I was on the mend. I was able to start doing my yoga and elliptical again.

You know what they say about back surgery? They say, don't do it unless you absolutely have to. It's painful and is a long recovery (6 months for the type of surgery I need). How was I gonna do back surgery and my lifestyle with 3 special needs kids?

But, my pain was horrendous. I saw no other option besides surgery.

I had it scheduled for tomorrow.

I cancelled it last week.

I was so happy and thrilled being in the play that there was no way, unless I was paralyzed, that I was not going to be in it. During the run of the play my back started feeling so much better after the witch doctor adjustment that I was able to do the last 3 shows without my back brace.

Heavenly Father knew how much pain I was going to be in and that I would want surgery ASAP. It must not have been the right time to have surgery, because he got me through the most extreme pain I've ever faced and now I can hopefully not have to have surgery anytime soon.

I just have to have faith in the Lord's timing.

And don't worry I apologized for giving him the "what for" once I started seeing how things were working out.

I'm not saying that I won't ever do the surgery.

I may have to one day.

In fact, I keep joking that he just needs me to wait until we get through this Parade of Pumpkins thing and then the extreme pain can come back...

Anyway, these two little journeys reminded me of a little video clip and I want to share it with you so maybe you can see that we shouldn't just assume that God has forsaken us during our hardest trials but is giving us peace of mind that what happened was what was supposed to happen.