God Bless America

I grew up religiously going to the Kaysville Parade and Fireworks.  Every year, without fail.  I love that parade.  For such a small town, they sure know how throw a party.  The past two years we have been in Florida for the Fourth of July.  And they just don't know how to throw a party like I grew up loving.  I was seriously so excited to take my kids to the Fourth of July celebration in Kaysville this year.  Only one thing could have made it better, Jon.

We wandered over to the fire station and got fire hats because Benson was in his wheelchair.  So it isn't all bad having special needs, I guess.  Benson decided there were too many people though and he was too nervous being in his chair so he hardly used it anyway.  Here we all are waiting for the parade.

 At the sound of the sirens, everyone is instantly leaning over the "line" to get a better look.  That line definitely didn't last very long though.

 Everyone liked the fire trucks..... except Brigham.

 I may or may not have gotten slightly teary eyed when my alma mater passed by playing "Dear Ole Davis High School."  Yes, I am completely ridiculous.  But, it was the first time I had felt even a twinge of sadness to be leaving Utah for an unknown amount of time.  It was the first and the last (ok, probably not the very last) time my kids would see the Kaysville Parade.  And I missed Jon.

 The Volkswagen club.  Love it.  I could handle driving a van that looked like this.

And this was Benson's view for the majority of the parade.  Brett was such a good sport.  Benson absolutely loved it.
After the parade we were too exhausted to go to the carnival.  That evening we went and BBQ'd with Jon's family for his mom's birthday.  And then went back to Kaysville for the fireworks.  Gotta love fireworks.  Vanessa danced, Benson watched and Brigham slept.  It was a great night.

May and June Recap

I haven't been updating our happenings.  So from longest ago to most recent.  Here is what we have been up to:

The end of April, the kids and I moved from Logan to my parents.  This is a picture of Brig around that time, so I'm adding it.  I have no idea why it looks like he has a cone head.  It's a very round head but apparently this was a weird angle.  But isn't that the cutest belly you've ever seen?!

 A month later, Vanessa turned THREE years old. Holy cow, have I really been a mother for three years? Why am I not any better at it then?! We had a fabulous birthday for the most crazy, lovable, sweet little girl around. It happened to be on a Sunday so we went to church, then came home and opened presents. Benson got a present too so he wouldn't feel left out.  They were flip flops.  I know, super lame.  But it was something he wanted and it was the 2/$5 sale at Old Navy.  Jon told Benson "Happy Vanessa's Birthday."  Ha.  I thought everyone did that.  But it was actually really cute.  Vanessa started opening them before I had pointed out that they had "twinner" gifts.  So mid-opening, I stopped her and gave them to Benson and gave her the pair for her to open.  She didn't care, but every gift after that she asked who it was for.  I adore the innocence of a three year old. 

 Brigham chilled nicely in the shade and was actually happy.  Bonus!

  I had the brilliant idea of opening presents on the deck, but it was actually insanely hot. But here is all the loot. Obviously, the most important gift was the bike. Which she has learned to ride and really enjoys it. When she wants to go ride a lot of times she says, "mom, I want to go practice my bike."

 After gift opening, we went to Jon's parents for dinner and then cousins came over for cake and ice cream.  Another cute story.  As she would open each gift from cousins, I would tell her who it was from.  As she went to open one gift, I told her it was FROM Brooklyn but she thought I said it was FOR Brooklyn.  She quickly jumped off her chair and said "I'll go give it to her."
This is the fabulous cake made by my talented sister-in-law.  Vanessa's favorite color is purple and her name means "butterfly".  Could it be any more perfect?

 Meanwhile, Brigham is still doing much of this......

 But also much of this.....

So we forgive him and are madly in love with the little man.

On May 30, we saw the pulmonologist for Benson and got the all-clear.

On May 31, we had the funeral for Jon's aunt who was killed in a car accident a few days previous.  Aunt Marlene had been living with Matt and Shauna the past year or so and it was really hard on everyone.  She was buried in the Salt Lake Cemetery next to her parents.

June 8 & 9 we had the Brady Family Reunion.  We had a hot dog and smores night on Friday and then Saturday took this party to the zoo.  I feel like we should have some kind of superhero music for this picture

The kids had a blast and were completely wiped out.  Jon and I also had a good time trying out our new lens.  It was a splurge Father's Day/Graduation gift for Jon.
The following week on Wednesday, I packed the kids up by myself and headed out to stay at a cabin with my sister-in-law.  We stayed from Wednesday-Saturday, with other people coming and going.  Tommy was there the first day and night and then Jon came the last night and day.  Kind of random.  We had fun single-mom-ing-it together and the boys learned that polygamy is NOT that great.

People tell me quite often that I am going to break my back carrying two kids.  But I feel like I have down-graded since Vanessa always wanted me to carry her when I was pregnant.  That was carrying three babies.  But I will admit my back is pretty messed-up.  Although I would also like to point out that most people's are.

 While at the cabin (and I use this term loosely, it was more like a house in the woods) Vanessa and Brooklyn put goo in their hair.  It took everything I had to keep calm, especially as she was screaming about how I was hurting her, trying to get that stuff out.  I thought for sure we were going to have to cut it.  It came out, amazingly.

Benson loved throwing rocks in the lake or river.  He literally asked to do it any time that wasn't what we were doing and cried when we took him away.

We also had a surprise visitor literally walk right beneath the deck of the cabin.  Benson still talks about this moose.  He says it looks like a cow and says MOO too.  Actually, I may or may not have told him the moose says MOO.  I didn't know what else to say.

The following week, Carrie and Ben came into town. We were so excited to see them, finally! We haven't seen them since we went to Oklahoma for Thanksgiving. We were almost a whole family except Steph and Ryan are in Seattle. Seriously, it's tough these days. While they were visiting, we went on all kind of day excursions. 

We went swimming at the Roy Aquatic Center.

Spent an afternoon hiking, throwing rocks in the river, and cooking hot dogs and smores in Mueller Park Canyon.

Riding Croslands new Pony, Rio. 

 Benson even rode!  And he must dream about this because he has woken up from several naps telling me about riding Rio.

 Cody and Macey also showed Vanessa how to search for peas and strawberries in the garden.  And, the best part was that she actually ate them!

 We also busted out the slip'n'slide and kiddie pool in the backyard.  As well as continual play in the sand box.

We ended the month by giving Brigham a name and a blessing on June 24.  Jon gave a beautiful blessing, as he has always done.  We wanted to get some awesome family pics but this is about all we could muster out of the kids.  Never mind the kiddie pool in front of us, we'll crop that out one of these days.  And also never mind that Brigham NEVER looked at the camera.  Or that I'm barefoot.

 At least he smiled in this one.

 Brady tradition is to make a cake that says "Welcome Brigham" (or whatever the baby's name is) and then stick the baby's hand in the cake.  I have no idea where this tradition came from, but it's kind of cute and so we play along.

It has been a crazy couple months and we are still going strong.  July and August are going to be just as crazy.  Then, September might bring some R&R.  Though I won't lie, the busy craziness of life is the zest of life.  It keeps things interesting and makes it fun.

Brigham's Stats

I finally made my way into the doctor's office for a well child check.  It took Brigham coughing and a few family members having been sick recently to get my behind in gear and make an appointment.  Don't worry, he wasn't actually sick.  But the shear panic of whooping cough was enough.  I am the only one suddenly paranoid of whooping cough?  All the recent outbreaks and horror stories of babies dying.  Someone is doing their job, if that job was to scare the public back into vaccinating.  Anyway, so here are some stats.  On June 20, 2012 Brigham was

Twelve pounds five ounces (37%)

          Twenty-three and one-half inches (31%)

Sixteen inches head circumference (34%)

I would call that a rather evenly proportioned baby if you ask me. 

It's Not All Rainbows and Cupcakes

I try my darndest to stay positive these days.  I am learning, by fire, that my attitude has SO much to do with how well my days go.  But honestly, this has been darn near the hardest year of my life.  Let's recap a bit.  Last August, we left Florida (insert tears, as I left all my friends).  Move #1.  We were in Utah for a week before Jon left for Kansas City.  Two weeks later the kids and I moved to Kansas City.  Move #2.  From Kansas City we drove the three hours to St Louis and parked here for three months.  Move #3.  While in Kansas City, we started PT for Benson and set up appointments at Primary Children's with the neurologist.  This appointment was scheduled in October and set for January!  We really enjoyed St Louis, but Jon finished out his rotations and we headed back to Utah for Christmas.  Move #4.  The kids and I stayed in Utah through January to get to all of Benson's appointments.  Jon flew out on the weekends to visit and was able to make it to the "big" appointment, or Benson's EMG.  In February, while awaiting genetic test results for Benson, the kids and I moved to Denver to be with Jon.  Move #5.  The doctor called me one lonely day in the hotel to confirm Benson had tested positive for SMA.  I can't say hold glad I was Jon was coming home that night and not the end of the week.  Even though we were already pretty sure, it crushed all possibilities of being something else.  After February, we headed back to Utah.  However, Utah wasn't ready.  So, unsure of what to do or where we would be going we stayed with Jon's parents for a bit.  Move #6.  After three weeks of waiting around for clinicals in Utah to get going (or to have a baby) we moved to Logan.  Move #7.  On Jon's first day I went into labor and ended up having Brigham the following day.  Longest labor ever!  But at least it was off and on, right?!  After staying with a friend for six weeks in Logan, we decided we might be wearing out our welcome with three kids, three and under.  So the kids and I moved in with my parents.  Move #8.  Jon is still staying in Logan and coming down on the weekends.  How is handling three kids, three and under; with two who can't walk?  All I can say is I am pretty sure there is only one set of footprints in the sand these days, and they aren't mine.  You would think living with my parents would make things entirely easy, but my parents have been out of town more than they have been around.  It's their right, being retired.  We sure appreciate their help when it's here, but we do our best to survive most days.  I have given up on a "perfect day."  A day when Benson gets in all the physical therapy that he needs.  A day when I never lose my temper, never say anything I wish I could immediately retract.  A day when Brigham doesn't have to scream for five minutes before I can get the kids settled so I can sit down for twenty minutes to nurse him.  A day when bedtime happens before 10pm.  A day when all three meals are healthy, with lots of fruits and veggies and not just crackers and cheese. 
Brigham hit a bout of colic around two weeks.  A mother who has never had a colicky baby does not understand what colic is.  Colic is not a baby who fusses occassionally.  Colic is a baby who cries, constantly.  And oftentimes, it is inconsolable crying.  Brigham, luckily was consoable in one way, to "wear" him.  Thus began our very close relationship of Brigham always being worn.  He still is, almost always, in either the Ergo or the Moby.  It makes it easier to carry Benson anyway.  But honestly, if he isn't in the carrier, I almost feel anxious.  Like he could explode any second and then it will be thirty minutes before I can calm him down and get him to sleep.  I am starting to lose that anxiety as he is starting to grow out of his crying.  He is slowly becoming a very happy baby.  He has absolutely adorable whole body grins.  And he is also doing the baby ooohing and ahhhing.  I adore this phase.
Benson is still our talking genius.  You can literally sit and have a conversation with this 20 month old.  He is so amazing.  We went to the pulmonologist yesterday, who gave the all clear for us.  His breathing still looks great.  He recommended we put him on the pulse oximeter for a couple nights and print out the readings.  We can send them in to the doctor, who will look them over and make sure he is doing as well at night.  It was a relief to have it confirmed by a doctor who is familiar with SMA that Benson is doing great.  We were also extremely happy to see that he had gained two pounds since we were at the doctor just 1 1/2 months ago!  That is such a HUGE relief to me.  He is finally back on the charts in the 1%!  I couldn't be more proud.  Thank you Pediasure!  Benson is still losing a lot of strength but we are working hard to maintain as much as possible.  I wish I were able to give him more, but I am doing my very best.  We are working on getting an electric stander to help with bone density and also improve muscles.  He has lost his ability to scoot :(  But he does have his new found independence and freedom with his wheelchair.  He is starting to like it more and more as we learn to adapt things for him.  We are even slowly starting to conquer our bedtime dilemma.  Benson has always been such an easy little guy to get to sleep.  A couple stories, a couple songs, boom, he's out.  Once Brigham was born, no more.  It has been a CHALLENGE.  But, ever so slowly, I am learning how to work with all three of them and get them all to sleep without having to leave anyone to cry.  That's really important to me.
Vanessa is three now! She still loves purple, Princesses, her animals (a.k.a. Littlest Pet Shop), Dora and Diego.  For her birthday (post to follow) she got a bike.  She is doing great learning how to ride it.  She also loves to find rolly pollies and worms.  Bees terrify her.  She recently fell on the sidewalk and scraped her knees.  She literally could not walk for the rest of the day and into the next day.  It took some serious effort to convince her she was going to be okay.  I have the most hilarious video of her walking around, bent over like a little old lady, trying to move her knees as little as possible.  She cracks me up constantly and also amazes me with things that she is able to understand that I wouldn't have thought she could. 
Every once in a while I will have a moment where I can't help but let a few tears roll for Benson.  How I love that boy and how my heart hurts for him.  I wish that I could make it better and take it all away.  It is a pain I can't possibly explain to watch your son's body slowly give way to an unseen disease.  How I hate it!  But, I know that Heavenly Father has a very special plan for Benson and I know that Benson agreed to have this body.  A body that would only limit him so much as he will allow it.  He is an amazing little boy.  I will say that while this past year has been inexplicably challenging, it has also been inexplicably rewarding.  I have learned and grown so much.  We have been blessed in so many ways, over and over again.  Things have just "worked out" in ways that were better in the end, even though in the beginning I thought I would go crazy.  Things like getting a rotation in Little Rock, Arkansas for July and August.  Springfield is only four hours from Little Rock, where we will be working after graduation.  We FINALLY get to make our last move.  Move #9, it's going to be fine!

Brigham Smiling

Brigham started giving those "unconscious" smiles at 10 days.  He started grinning really big at around four weeks. I have yet to catch one on camera. He started to throw in the coos at around 6 weeks.  At 8 weeks, he is following us all over with his eyes and making great eye contact.  It's so encouraging as a parent to watch your child develop and hit all their milestones.  We are still working on the tummy time thing.  Most of his life is spent in a carrier so he still doesn't pop up on his elbows.  Though I think his strength is adequate he could do it if we practiced, and he didn't cry so much :)

Kids Say the Darndest

Benson grabbed his nipple, squeezed, and proudly declared "MILK!"

Benson started shouting at me out of the blue "potty."  So naturally, I asked if he needed to go potty.  He said yes.  I asked him if he wanted to go sit on the potty.  He said yes.  I shrugged, picked him up and took him to the potty.  He sat there so proud.  Telling me over and over.  "Sit potty."  "Sit potty."  He didn't want to get up.  I finally suggested we move it into the other room where everyone else was and he agreed that would be okay.  I set the potty down, put Benson back on and he sat there all proud again.  Vanessa walks over to me pouting.  "I can't ever share my little potty because it's special."
Ensues potty dance.  After a minute I decided she really did have to go so I moved Benson.  Vanessa sat down and sure enough, went a little peepee.  After being de-throned.  Benson was upset and started whining to me.  I asked Vanessa if she was done.  She told me, "No.  I'm pretending I have a lot of peepee."
*Post edit:  I put Benson's diaper back on when I took him off the potty.  Once Vanessa decided she was done pretending, Benson wanted back on.  I just left his diaper on but sat him on the potty.  He stayed there for a while and then proudly declared.  "All done."  I nodded at him and said "all done?"  I just kept on doing my thing for a few more minutes as he continued to say "all done" over and over.  I finally went over and sure enough, he had pooped.  Course it was in the diaper, but he definitely knew he had to go and definitely wanted to go in the potty.  Smart kid I tell ya.

Someone handed Vanessa a plastic cover piece that hooked into a circle.  They told her she could play with it and she declared it was a necklace.  She continued to say that she would wear her necklace at her wedding to get married and she would go to the temple.  She walked a few steps away, said she was now at the temple and needed Benson to come stand by her so they could get married.

Whenever we are playing pretend, Vanessa likes to give everyone fake names.  She usually will make up random syllables, that are never the same.  Nana, shelala, niniayla.  Most of the names sound identical if we are named right after each other.

Vanessa told me when she grows up she wants to have a big bum too.

In the store, walking past a really large woman, Vanessa said, "Mom, she has a big bum too!"
*Note: apparently my daughter thinks I have a big bum

Jon was looking at some pictures we had printed up.  Vanessa walked over and asked to look too.  Jon told her she could but he would hold them.  "Do my hands have germs?"  Vanessa asked.  "I go get han sanisizer." 

Vanessa was mad because I had told her no for some random thing.  She walked over to me and mid-cry, touches Brigham's head and said, "He's so cute."

We took Jon's motorcycle to Florida, but ended up selling it while there.  This was a year ago mind you.  Vanessa told us the other day that she wanted a ride on dad's bike.  We told her we left it in Florida.  "I want to go back to Florida and ride dad's bike."

It Is Usually Through Another Person That He Meets Our Needs

I have always loved the quote "God does notice us and watches over us, but it is usually through another person that he meets our needs."  Although I have never really applied it to my own life.  I have a REALLY hard time asking for, and accepting help.  Call it pride or independence, it is what it is.  But lately, I am realizing that life is going to teach me to ask for help.  I am also realizing that my son is going to need help, and from more people than just me.  I am doing him a disservice my not letting him get all the help he needs.  So here are a few pics of some recent help we have received.

Benson's wheelchair was purchased with the help of all our family and many friends.  We are so thankful to them! It is such a blessing for Benson and he is getting better everyday.

 

 The Families of Spinal Muscular Atrophy is an organization that sends out care packages to all newly diagnosed families, among doing many other things (like research for a treatment or cure!)  You can't clearly see everything in the pictures, but there are tons of toys, Bumbo, Radio Flyer, Fisher Price swing, Pillow Pet, Lamb skin, homemade blanket, and a "snugglie."

 While I was taking pictures I had to take one of this.  My sweet friend, Molly, sent me this blanket for Brigham.  It's freakin cute fabric and it's that minky stuff that you can't help but love.

I also have to mention how amazing my parents are (both sets).  My mom gives so much of her time helping her kids and now grandkids.  I think she is busier now than she was when we were little, still taking care of us!  My dad and my father-in-law have helped us drive cross country more than once, since we are gypsies.  We are sure blessed to have such amazing family and friends!

Brigham....4 days old

Back tracking here, but I did take a few pics when Brig was tiny.  I finally got them edited.  Don't tell, but the blanket was pink.  It HAD to be changed.

Easter and Other Musings

 17 days old

 23 days old.  Proof he is getting so big; in every picture his hair is already moving farther back on his head and getting thinner.  He loves his pacifier.  I may have a binki baby.  Loves being held or in the Moby.  We definitely love him and his cuddliness!

 Such a cute little man.  He is so sweet.  Seriously, this guy deals with a lot and does it so patiently.
On top of everything, he is finally filling in those gaps with his I teeth; all four! He loves balls, cars, trains, and pink.  The latter much to his dad's dismay.  He got his wheelchair (pictures forthcoming) and is learning how to steer.  I can't believe how quickly he has picked it up.  Benson loves to be included in everything.  He plays whatever Vanessa plays and copies everything she does.  He says "pease" and "dank ou" or "danks" to everyone and for everything. Most polite 19 mo old ever.  He talks incredibly well, as I have said 1000 times already.  He can ask simple questions, such as "Where dad?"  When the sentences get a little mor complex, he just goes with the key words.  "Mom, walk, dog, outside."  Meaning: I want to go for a walk outside to see the dog. He's pretty amazing for sure and I know he has amazing things in store for him.

Ha ha, I love this picture.  Vanessa is definitely our little butterfly.  I don't know that we could have picked a more fitting name (Vanessa means butterfly in Greek).  She is full of life, love, fun and energy.  She definitely has an extrovert personality.  She loves to play with other kids and any kid is automatically "her friend."  She loves being around her cousins and having friends to play with so often.  She loves to run, jump on the tramp, play in the sand, ride bikes, and generally do anything outside.  She is full of spunk and sass and we love it.  I can see a lot of my own personality in her, so I hope that goes well for both of us.  Some cute things she has said lately.
At my parents, some men were outside working on the yard.  Vanessa was leery of them at first, but decided they were okay after awhile.  She proceeded to stand by them and talk with them, she was there a good ten minutes when I went over to try to save them.  She told me, "Mom, you go inside.  I am talking to the guys."
Here in Logan, they have a tramp in the ground.  Vanessa has never been on one of these.  Watching her get on was hilarious.  She stared at it for a while, then cautiously stepped over the springs and bounded onto the tramp.  Immediately hollering with delight, "I did it!"
A few weeks ago, my  mom and I got in a small car accident.  No one was injured, but it took forever to get everything squared away before we could head home.  I unbuckled Vanessa and Benson to stop their incessant hollering and had to take Vanessa outside to see the damage done to the car.  She is still talking about grandma's car's "ouies."
We did celebrate Easter this year, although apparently we failed to capture it in pictures; on our own camera anyway.  We'll have to still some pictures from my mom.  On Saturday morning, we went to Baby Animal Days in Logan.  The kids LOVED it.  I think holding the ducklings, chicks, and bunnies was the biggest hit.  Saturday afternoon we did an Easter egg hunt with the Purdy family.  Becky helped Benson look for eggs and he loved it.  Vanessa surprised me with her ability to find them, and quickly.  I don't know why she can't ever find her shoes, or her jacket or anything else I need her to find.  Brigham slept through it in the Moby.  We had a fabulous dinner, with the Purdys as well.  On Sunday, we went to sacrament meeting with the whole family, then left Vanessa there for nursery and took the boys home.  I'm really not ready to take Brigham to church, but since it was Easter, we felt we should.  Vanessa loves nursery and chose to stay so my mom brought her home.  Then we headed over to the Bradys.  We had an egg hunt with them and another fabulous dinner.  All in all, we had WAY too much candy and WAY too much food.
This year with Easter, I could not help but think of the resurrection and what this means for Benson.  I am so grateful to our Savior, that he would atone for our sins, die for us, and be resurrected.  I can't end without sharing this quote.  Pretty much sums up my feelings exactly.

“For reasons usually unknown, some people are born with physical limitations. Specific parts of the body may be abnormal. Regulatory systems may be out of balance. And all of our bodies are subject to disease and death. Nevertheless, the gift of a physical body is priceless. …

“A perfect body is not required to achieve a divine destiny. In fact, some of the sweetest spirits are housed in frail frames. …

“Eventually the time will come when each ‘spirit and … body shall be reunited again in … perfect form; both limb and joint shall be restored to its proper frame’ (Alma 11:43). Then, thanks to the Atonement of Jesus Christ, we can become perfected in Him." from Ronald A Rasband's talk, Special Lessons.

Welcome to Holland

Welcome to Holland

by Emily Perl Kingsley - The mother of a child with Down's Syndrome.


I am often asked to describe the experience
of raising a child with a disability --
to try to help people who have not shared
that unique experience to understand it,
to imagine how it would feel: It's like this...

When you're going to have a baby, it's like planning
a fabulous vacation trip -- to Italy.
You buy a bunch of guidebooks and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, 'Welcome to Holland.'

'Holland?!?' you say. 'What do you mean, Holland?
I signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy.'

But there's been a change in the flight plan.
They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.

So you must go out and buy different guide books.
And you must learn a whole new language.
And you will meet a whole new group of people
you would never have met.

It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you have been there for a while and catch your breath,
you look around....and you begin to notice
that Holland has windmills...and Holland has tulips.
Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...
and they're all bragging about the wonderful time they had there.
And for the rest of your life, you will say
"Yes, that is where I was supposed to go.
That is what I had planned."

And the pain of that will never, ever, ever go away...
because the loss of that dream is a very significant loss.

But...
if you spend your life mourning the fact
that you didn't get to Italy, you may never be free
to enjoy the very special, the very lovely things...
about Holland.