Eliza's Big News

I know I mostly talk about Isaac (or the dog), but I do have other children!;) Eliza also has Fragile X Syndrome, but seems to be further a head than Isaac was. In fact, I can officially say that...drum roll please....

ELIZA IS WALKING!!

She isn't even 18 months yet. She's such a *Rock Star*

Besides having FXS, she also has a possible lazy eye and astigmatism. I'm surprised she can walk as well as she does.

When walking, she has to put her belly first to balance things out or else she'll topple over.

I have to giggle at her belly-it's so big and round! 

I think she ate as much dirt as watermelon that day.

The other day she ate four waffles. She eats a bowl of oatmeal plus more for breakfast. Oh, and she loves sweets. Heaven help us!

We joke that we will have to put a lock on the fridge when she gets older...

We love our sweet little Eliza. She brings such joy! I am so happy we have her.

Dating Costs Less Than Divorce

I know, I said it! The "D" word: DIVORCE.

No, Jeremy and I are NOT getting a divorce. And one reason why is because we DATE.

Talking about Divorce

This is my phone background:)

When I went to BYU I had the opportunity to combine my background in journalism and my new study of Human Development/Family Studies. I worked with a professor that was building up a new website for those thinking about divorce. I wrote several articles, including a three part series about how divorce is more common in families with special needs children.

-It's hard!
-There's no time for you, let alone your spouse
-Your child requires so much time, money, mental effort, etc. that it is hard to have anything left for your spouse.

Because I have two children with special needs I've always worried that maybe that disqualifies me from a happy, long-term marriage, but that's not true! And this is why I loved researching about divorce:
- I found hope that it doesn't have to happen to me
- I learned so much about what it means to have a happy marriage
- There is fabulous research, especially by Gottman. He is the true love doctor! You can learn about the Four Horseman he discovered here and more.

Here is a link to the website and my article. Check out the website for some excellent information. If you are thinking about divorce or want to gain knowledge about what a healthy marriage is, this is a great website backed by great research.

Talking about Dates

Sometimes our silliest, most spontaneous dates are more fun and memorable than ones that are all planned out and cost a lot.

One of my favorite dates was going to the local dollar store. 
We decided to buy three different gifts (you can do as many as you want):
1) Something useful
2) Something funny (we thought we would do something not totally off the wall that was still somewhat useful, but you can choose. I'd personally rather have a mug that says, "Bacon is the reason I get up in the morning" over a can of fart goo. But to each his own).
3) Something yummy

For something useful, I got Jeremy some seeds to plant because he loves planting and growing anything! Jeremy got me a kitchen utensil. The dollar store actually has some decent ones for a buck.

For something funny, Jeremy got me the romantic mug I mentioned above. Ha ha. I got him a grabber dohickey to pick up things while you are still standing up. That, my friends, was epic.

For a treat, I gave him some off-brand of those Little Debbie brownies with sprinkles on top. He loves sweets. And he got me a bag of Reasons. Those have sentimental value for me. When he was just home from his mission he stopped by my apartment at  USU and gave me Reasons, then told me that there is always a "reason" to stop by. It was so cheesy romantic and cute!

Now, if I were to do this date again I would either change the treat part or carefully check the merchandise, because both were super hard treats! Ha, but we ate them anyway!

That was a really memorable date and so simple. Definitely a budget friendly one, too!

Last night's date was wonderful
We have been very blessed to have supported living for Isaac that makes it possible to go on dates regularly and for more than just an hour!

Jeremy had been gone most of the week for work, so I was really looking forward to going on a date. We had a few ideas of what to do, but we decided we would go out to dinner. One of our go-tos is Olive Garden. Classic. They have yummy breadsticks that you just can't pass up! Dinner was great and all, but the real fun came after.

We decided to find a mountain trail we could leisurely walk. We came upon an area we had been before, but found a different trail head we had no idea was there. So we took it!

It was a short trail that lead to an open spot with a great view over the valley. There were benches to sit on, too.

We just talked and looked at the sky. Jeremy pointed out venus and we talked the stars, our kids, and everything in between. Jeremy has always been easy to talk to. It's nice:)

We were about to go when Jeremy said he wanted to check out the side of the mountain that had some purple rock. I don't know why, but we were there for like an hour looking at the different colors of rock and talking about it. I felt like such a nerd! They were actually quite beautiful.

Long story short, I felt like we were an engaged couple again. I love my Jeremy

Oh yeah, look at that pose:)

Our Decision, A Funny Story, and Blessings

Well, today as I was talking to Jeremy, everything seemed so simple. We are going to keep Roxy and we are moving forward with getting a service dog for Isaac. The trainers have not yet found one that they feel is right for Isaac, but I am looking forward to meeting this future dog (most likely a Labrador).  That's the course we have decided to take for now.

Here is why I'm feeling blessed today (well, at least some of the reasons):

           1) Roxy is doing so much better already! 
I was expecting weeks of the coughing and barf, runny nose, lethargy, and sad eyes. But as of today, she is doing so much better. She actually ran around a little, ate some plain rice, chewed on a stick, and played a bit. It was so sad seeing her so sick. I didn't know dogs could be that way. 

Just in case you've never seen a dog with a runny nose...

Night time cuddles

Millie helping Roxy feel better with a blankie

Eliza thinks Roxy is funny

           2) Roxy learned a lot in one week
So, as Roxy has been getting better I've noticed a few things. 
First, she is way more obedient than she used to be. 
perfect, mind you, but wow I never knew a week could do so much. 
Second, she actually did pick up on some of the service dog things. The sad thing is, she doesn't do it for Isaac-she does it for me, though! I think it is because Isaac has a hard time showing affection softly. She needs lots of cuddles, scratches, and pets. We've had some tender moments the past few days:) So far I've noticed she will kind of come on my lap or put her paw up when I say lap (that's from learning deep pressure/anxiety stuff) and interruption of self harm by licking. This is a video of me trying to reenact, but it's not very good when she was dead asleep when I woke her, but you get the picture. Also something you can't see is her putting her paw on my lap. And don't mind me lol.

                        ***Funny story here. I actually found out about the self harm interruption when I was getting really frustrated changing a nasty poopy bum on Isaac. It got on my fingers and I just started dry heaving (I know, you'd think I'd be used to it by now, but sometimes it just gets me). I was pretty frustrated, too, because Isaac was in his giggly moods, touching his poo, etc. Well, Roxy come up between us and looks at me. I thought she was just going to try and get his poopy diaper like she used to and she was being super annoying. I was about to tell her to go away when she just started licking my face like crazy. I'm thinking, okay love ya too but seriously? But it dawned on me-is this her trying to help?
                              So later I tried to pretend to hit myself, shake my head, and moan. She immediately came and started licking my face. I tried it a few more times to make sure it wasn't just in my head. Nope, it's legit! How cool is that! Although, I don't think I'll use it...unless I'm changing another one of Isaac's poopy diapers. Ha! Come to think of it, it did get me out of my angry funk. Way to go, Roxy!***

         3) I feel at peace

As I'm sure you noticed, my last post I was so not in a good place. And, maybe this sounds funny, but I really believe many people-many of you-have been praying for us and thinking about us. I feel it. I didn't realize it at first, but now I see it in how quickly Roxy is healing, how my husband and I were able to make a decision both of us are okay with, and not having overwhelming feelings sadness, embarrassment, or confusion. 
I mean, I guess I still am a little embarrassed about some things, and I don't fully understand all of this, but overall? A feeling of love and peace. Even over this silly dog thing! Even when there are way worse things going on everywhere. He cares for little ole me. I've also felt the love and friendship from my friends and readers.

I feel like Jeremy and I just beg for more craziness in our life, but I look forward to this next chapter.

Service dog woes

Sigh. I know I'm not supposed to ask this question because it gets you nowhere, but, seriously?

WHY?!

Okay let me step back. I feel like I have to explain myself in hopes that maybe everyone won't think I'm an idiot. Pardon my French.

Special needs mom's and all moms understand that you want to do anything you can for your child.

And often times you don't feel like you are doing enough.

And if you struggle with depression and anxiety, like I do, it compounds the problem. And sometimes you make dumb decisions.

So at a low spot I got desperate. Desperate to help my son and desperate to help me. It sounded like a great idea. We didn't have any help at the time, and I was scraping to find something, anything to help us. I looked more into getting a service dog.

I'm not so sure about that now.

But, as Elder Wirthlin once said, “perseverance means to continue in a given course until we have reached a goal or objective, regardless of obstacles, opposition, and other counter influences.”

So that's what I've been trying to do, but nothing has been working out.

Jeremy reminded me of the poem President Monson once shared that says, "Stick to your task till it sticks to you..." But now I have to ask, what if you stuck to the wrong task?

So, months ago I had contemplated getting a service dog. I finally moved forward with a company called SDWR. Shortly after I got things rolling, trying to raise a whopping $25,000, I discovered that they were bogus and I pulled our quickly after, but not without losing money that was given to us by a few faithful friends.

Failure. Embarrassment. I kept going.

Next, my sister-in-law came upon a woman who decided to train Giant Schnauzers with no cost for those in need. We met with her and were first on the list to get a dog in December. But when Isaac met the dogs they didn't mesh. The more I researched, the more I realized this wouldn't make the best service dog for our situation.

Sorry and feeling awkward for not actually going that way.

I continued looking for other options and came upon Ty the Dog Guy. I thought I'd go with this option if I found the right dog. I heard labradoodles were a good option. Well, I came upon one on KSL and everything worked like clock work to get this little puppy. 

That's Roxy.

I'd never had a puppy in my life and it was SO hard. She ate everything, peed on the floor, and I'm trying to take care of my three kids, which is a task in itself.

We got her at 9 weeks and we thought she had Parvo. 

Expensive vet bill. Luckily it wasn't Parvo, though. But we thought we would lose this little puppy.

We paid to get her fixed, vaccinated, licensed, etc.

We took her to a great vet and paid a lot of money we don't really have.

But it was all because it was going to be what was best for Isaac.

Speed forward till Roxy is now seven months. We sadly drop her off at the service dog training facility knowing we will not see her for weeks. 

Well, it was actually only one.

We got a call a few days after she was there saying that she may not be cut out for service dog work. I wanted to yell and cry at the same time.

I picked her up on the 24th of July to come home defeated. I couldn't help but cry all the way home.

When we got her home I noticed she was shedding WAY more than usual. She was coughing and vomiting, sleeping all the time, not eating like usual, and having troubles going to the bathroom. 

Turns out somebody decided that they would bring their dog for boarding at the facility and not tell anyone the dog had kennel cough till after they picked her up. 

Thanks. Thank a lot. (Sorry for the sarcasm, but it makes me mad:( ).

So I had to take Roxy to the vet today. She needs antibiotics, probiotics, etc. Another bill for a dog that isn't cut out for the purpose we bought her for (but who we still love).

Not to mention, the training week was really hard on her and now she is more timid and scared. She is a really sensitive dog, which made training difficult even when they tried to take it slow. So I hope she is still okay once all this sickness is over.

Now we have to make a choice.

Do we keep her and get a service dog, too?
Do we get rid of her and get a service dog the trainers choose?
Do we get rid of her or keep her and give everyone their money back with out tail tucked between out legs and move on?

What in the world am I supposed to learn from this?

I feel frustrated, confused, embarrassed, angry, sad, stupid, just to name a few.
Not to mention that this past weekend has been a whirlwind without all the Roxy stuff.

If nothing else, I guess I am supposed to learn humility in front of the whole world while many are out there saying, "I told you so."

Well, I don't know what to do right now. I have no stubbornness or pride left on this subject. 

On the bright side, since first going on this journey to get a service dog many things have changed for Isaac and our family.

First, we now have Blake and other opportunities to get respite and supported living to help Isaac get out in the community, get one on one time for extra help in learning new skills, and more.

Second, he now has a behaviorist that is aiding us in helping with self harm, potty training, and aggression. Nothing to report on yet, but I always hope.

Third, we are trying new medicine with Isaac. We have found one that has helped his anxiety in public situations and are currently working on helping him with the ADHD. Medication can be so hard. Believe me, it's not the easy way out. And yes, we have tried oils and other things.

So, dog or not, God loves Isaac and will continue to help us help him.

Kirsten, signing out.


"A little more persistence, a little more effort, and what seemed a hopeless failure may turn into a glorious success. … There is no defeat except within, no really insurmountable barrier save one’s own inherent weakness of purpose"

"the question of why Job, or anyone, might suffer pain and sorrow, but does state clearly that affliction is not necessarily a sign of God’s anger and a punishment for sin, as Job’s friends told him. The book suggests that affliction, if not for punishment, may be for experience, discipline, and instruction"

(Okay, so I don't have it as bad as Job and this is not that big of a deal and will pass, and maybe I'm dramatic, but....)

 Remaining faithful to the Lord through his indescribable sorrow and suffering, Job was able to say, “Blessed be the name of the Lord” (Job 1:21). “Though he slay me, yet will I trust in him. … He also shall be my salvation. … For I know that my redeemer liveth, and that he shall stand at the latter day upon the earth … yet in my flesh shall I see God” (Job 13:15–16; Job 19:25–26).

Seven Reasons Why I Have Children

I know there are many out there that wonder why I ever had children at all, knowing that I am a carrier of Fragile X Syndrome.

Well, there's lots of reasons. So, in no particular order, here you go:

1) I wanted to. 

And my husband agreed:) It's as simple as that. I would say that many, if not most, women have a natural desire in them to bare their own children.

2) I believe we have been commanded to "multiply and replenish the earth," as the Bible says. And I want to obey the commandments of God.


3) I can. 
There are many women unable to bare children of their own. This can be terribly heartbreaking. These women may feel broken. I empathize with them.

After my first two children, I felt that even though I could have more children I shouldn't because it could have Fragile X and it was just too hard, it might be a burden on society, etc.
I saw friends around me pregnant and felt that it should be me, but also felt it just couldn't be. I, too, felt broken and wondered if I should adopt or do InVetro, etc.
4) I honestly didn't know what I was getting into.
I had no idea how my life would change forever by having a child with special needs.

I've been around children with special needs throughout my life and yet it just didn't click. You just don't fully grasp and understand it until you live with it day to day and it's your responsibility. Now, having said that, even after having Isaac, who has FXS, we still chose to have another child naturally.

So...maybe some un-numbered reason is that I'm slightly crazy, but let's not go there;)


5) I had a hope.
I was in la la land and did not think it would ever happen to me. My first child was perfect as can be. So smart and a head of the game. She wasn't even a carrier. It was a miracle. So, I thought maybe we just wouldn't have any children with FXS and so we tried again.

6) I felt it was right.
I believe in personal revelation, in the gift of the Holy Ghost, and in a Heavenly Father who loves and cares about his children


7) I want to help God's children and bring up His Kingdom on Earth.
So many children are born to less than ideal situations, circumstances, or families. And although I know that I am far from perfect, I do know that I can offer these sweet spirits two things:

*The Gospel of Jesus Christ

* Unconditional love

Yes, it's true, I may not be able to afford to have each of my kids in three different extracurricular activities. My children aren't child prodigies in music, math, or art. But guess what? They know they are loved and they are growing up in a home that (I hope) has the spirit and the true teachings of Jesus Christ taught and lived each day.

Service Dog Training

It's official! Roxy is now in service dog training.

Thanks to everyone who helped support us!

It was hard letting her go to her training, because she will be gone for about two months. W
e get to see her on a few of the weekends, though.
I hope she is happy.
I hope she is doing well and feeling loved. And I hope she knows that we didn't just abandon her!

I am really looking forward to seeing her progress. I hope that it all turns out well. There's still hard work and training a head, but I feel like we've taken the huge leap! This has been a crazy adventure and definitely a learning curve for me.

This is all for you, little Buddy!

Supported Living Staff: Mr. B

Well, it finally happened, folks.

Isaac has been on DSPD for awhile now and we have all benefited greatly from this!

One being supported living staff. Right now we only have one person working for us.

That's Mr. B.

He is a pre-med student at BYU and was married just over a year ago. Since working with Isaac, he has decided to go into pediatrics, specifically for special needs children. He will be with us a few more years before graduating, but I don't even want to think about when he has to leave us.

He has been an angel!

He helps take care of Isaac, even giving him baths, clipping his nails, and helping me cut his hair. He takes him to the park and splash pad. They go for walks and jump on the tramp. This helps me in so many ways.

I can spend time with my girls, do things I enjoy, clean places that haven't been cleaned in forever, run errands, etc. He even helps clean up. I love how much Isaac enjoys Mr. B coming over. He's never thrown a tantrum or cried when he sees Mr. B. He's always liked him and that is SO key.

I am grateful in so many ways! It's a Miracle!

He even helped us dig trenches for our sprinkler system:)

Persistence + Failure = Success

"Persistence + Failure = Success"

My finance teacher wrote this and I like it!

Thoughts

General Conference has been amazing! As usual. Elder Holland's talk was especially touching. I really liked when he said, "We are more than our afflictions." I couldn't help but think that Isaac is more than Fragile X Syndrome. I am more than a carrier of Fragile X Syndrome. This does not define who we are. And although it may define in some ways the capabilities, struggles, etc. we can overcome much.
It also made me think that I and those dear to me are more than their trials, circumstances, or afflictions

Panic at the Partay!

My good friend, who helped us get our first house, threw a huge party up the canyon with her real estate buddies.

It was so awesome!
Everything was free and all the food was all you can eat.There were hot dogs, snow cones, and cotton candy!

There was a legit magic show, blow up toys/slides, huge blow up balls you could get inside and run around, face painting, and balloon animals.

It was great.

We wanted to go as a family, of course, but I know public events such as this can be hard with/for Isaac. I thought he'd have some fun, though. So we brought Mr. B, our new staff for Isaac, and his wife.

It started off fine. We got hot dogs (Isaac won't eat those), then balloon animals (Isaac through his down), and then snow cones (he won't eat those either because he still eats with his hands).

I know, we're doin' great, right?....
But hey, we are there as a family and we're going to have fun!;)

Then we decide to go to the magic show. We take Isaac out of his wheelchair and hike up to the top of the amphitheater where it's shady. We were the first ones there and everything was dandy.

Than people started coming....

And some people sat in front of Isaac where he really, really, really wanted to put his feet.
Mr. B tried to help make things better, but he just could not sit still, be quiet, or any of that.

So...a few minutes into the show (which started late and waiting for Isaac is....well...not his best skill), Mr. B carried him back to his wheelchair and walked around till the show was over.

Okay, but, remember, we are a family and we are here together and we are going to have fun...

Ha, but really we were having fun. All this was just typical Isaac stuff and we had help, so we were still enjoying the treats and the show, etc.

After the magic show, the kids wanted to go on the blow up toys and slides. Well, Isaac really wanted to go on this one that Millie went on. It wasn't really the best for him...

This is where the fun really begins.

Bless Mr. B's heart.

He took Isaac into the blow up thing. Now, this was no easy task. Mr. B had to lift Isaac up and into this hole and then go through an obstacle course thing with him.
Now, mind you, Mr. B is not big, but he is in his twenties and not exactly meant for that course.

But he was on a mission.

So I decide to wait at the end of the slide of this big blow up obstacle course thing. I'm talking to some old friends and waiting...

I get my camera ready to get Isaac coming down the slide and waiting...

I see Millie coming down for the third time and wonder where they are....I'm still waiting...

I talk to my friends and laugh about how I am still waiting for Isaac...

Then I look over and see Mr. B desperately trying to get my attention towards the middle of the obstacle course.

I run over, leaving my friends mid-sentence, and help Mr. B get Isaac out of the course. I set Isaac down by me and see him running towards Jeremy.

Mr. B quickly explains he couldn't get Isaac up to the slide part because

A) It was too hard for Isaac's gross motor skills
B) Mr. B was making the whole thing go down with his weight and
C) It was hard for any kid to get up, let alone a grown man sinking in blow up toys carrying a flailing string bean!

We laugh about it and he goes about trying to get out of the blow up thing himself...I'm still not sure how he did that....

I walk back to Jeremy, Eliza, and Mr. B's wife. Millie is still going around and down the slide over and over.

I don't see Isaac anywhere. 

I ask Jeremy, "Where's Isaac?"

He tells me, "I don't know, I never saw him"

"I thought he came right over here!"

PANIC

I start looking around like a mad woman on a mission. I'm scouring the crowd left and right.

Nothing.

I go back to the blow up course and look in to see if somehow he got back in and was jumping around.

Nothing.

I have no idea where my son is. My son with Fragile X Syndrome that
can't talk
has no awareness of danger
and is alone in a crowd

I go towards the back of the blow up course and realize that it is bordering a river. A RIVER!
A rapidly moving, deep river that can swallow a child whole.

"Dear Heavenly Father, please no. Please no." I think and silently pray. Though the words were nothing near to silent in my mind and I'm sure I was moving my mouth or whispering.

I quickly scanned the part of the river I could see.

no, please no.

Then I notice an area with a lot of kids gathered close and where there is no brush or trees. It's a steep slope or more like a drop off. I ran to it and looked down, expecting to see Isaac.

Nothing.

I looked around at the people nearby and noticed they had no alarm, and I figured Isaac would turn some heads.
I felt he wasn't in the river.

I went back to where Jeremy had been standing. Mr. B and his wife had found Isaac near the entrance of the blow up course. We grabbed him and put him back in his wheelchair to go to a more simple blow up attraction with no need to climb, just bounce!

As we were getting Isaac in his seat and talking, I looked to find Jeremy.
I found him with Eliza in one arm, looking up and down the river.

He didn't know we had found Isaac.

He had the same thoughts I had.

My heart ached and I hurried to tell him we'd found Isaac safe.

I know that this happens to so many children, especially autistic ones that have no clue of danger.

I am so grateful that Isaac was safe.

Bolting is a serious thing. He really does need that wheelchair.

Long story short (oh wait, this is already long...oops), Isaac had fun in the bounce house, we ate more junk food, and then Isaac started hitting himself, so we had to call it a night with Millie crying about not getting her face painted after we waited in line.

I feel bad that she doesn't get to do a lot of things because of her siblings. But that's for another post.

Thanks for reading!