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.

Life With Three

After Brigham was born, my mom came up to Logan with us to help out.  She stayed for three days and then we went back to Davis County for the weekend.  We hung out with family for the weekend then my mom came back up to Logan again to help for a couple more days.  Bless her!  It was so needed.  On Wed, before she headed back down, she took Vanessa and Benson to the store with her and let me get some sleep with Brig.  I slept until noon!  I don't think I have ever known exhaustion like this.  Benson still doesn't sleep through the night.  I was reading through an SMA forum and other parents have the same problem we have.  He can't turn at night and wakes up uncomfortable, so we have to wiggle him around until he is comfortable.  Sometimes he only wakes up a couple times, sometimes it feels like a million.  He also can't go through the night without a full sippy of milk.  This is also probably legit because they don't have the muscle for their body to use the proteins through the night.  They aren't supposed to go more than 4-6 hours without eating.  Needless to say, we are pretty tired at our house.  At least they are cute though!

 Here is Brig at exactly the one week mark.  Things have been crazy and I haven't gotten the newborn pics I was hoping for, but it still might happen....here's to hoping!  One day we took the kids for a walk.  A friend, Erin Miller, gave us this awesome double stroller.  I try to keep my emotions in check these days because I feel like if I start crying, it won't stop.  But when my mom showed us this stroller that she had brought over, it was one of those moments where it is just amazing to me how generous and thoughtful people can be.  I also want to take some pictures of a care package the Families of Spinal Muscular Atrophy Organization sent us.  Seriously, amazing.  So, back to the walk.  We collected some rocks....

 Saw some chickens....

 Found a caterpillar (and surprisingly didn't even kill it)....

 Then went home and rode bikes.  A new favorite for the kids.  Except Benson fell off the truck :(  Resulting in a huge bump and bruise.  So the next time, I tied a rope around him and tied a rope to the wheel so I could pull him.  Trying to save my back and Brigham's head from falling off.  I tipped the entire truck over and gave him a bruise on the other side :(  So, now Benson prefers to ride passenger on the wiggle bikes.  No more truck for him.

 Both Benson and Vanessa adore their baby.  Vanessa likes to "pet" him all day.  They both love to give him kisses and give him his binki.  Benson likes to point out all his body parts, eye, nose, mouth, ear, hair, etc. 

 Nine days old

 Let's be honest, Jon and I both love sleeping with our babies.  It creates some bad habits.  But they're only newborn for such a short time!

 I love that all my kids have their daddy's blue blue eyes.

 New dress ups

 Ten days old

 We are super excited for Benson to get a new wheelchair.  This chair is only 7 lbs and is a manual chair.  He tried one out and in just a matter of minutes had figured out how to go backwards and pop some wheelies.  The family that owned it said their son had it down within a matter of three days.  We were so bummed when insurance said they wouldn't cover it since it is only made in Sweden and there was no way they could get it.  Price out of pocket through a distributor was $4000.  But then, we found a lady in Virginia who had a daughter with SMA and had gotten some and was selling them significantly cheaper.  What a blessing!  We can't wait for the chair to get here (it should be here Monday)!

Labor

Now that Brigham is almost two weeks, I guess I should get his labor story writen down.
Midnight March 17, I started having contractions but they were light and I was pretty sure they weren't going to turn into real labor.  They lasted a few hours and then I went back to sleep.
March 18, I had contractions starting in the early afternoon and lasting through the evening.  They were light and sporadic, but I felt like labor was getting closer.  Around midnight, they were picking up and I was sure I was in labor.  Our labor plan was to take the kids down to my parents early in labor and hang out until we were ready to go to the hospital.  At around 3am, March 19, we decided to get ready to take the kids down.  I jumped in the shower (which I discovered I loved laboring in the shower!) and Jon took a few things out to the car.  That's when we discovered that the storm predicted had come a little early (or was it late?).  Either way, there were over six inches and it was still snowing.  Fabulous timing, right?  At about 4am we had the kids loaded up, both now wide awake watching the snow, and headed down the canyon.  About ten minutes into our drive, my contractions completely stopped.  My decided to keep going, thinking it would start up again.  It didn't.  We got to my parents and crashed with the kids.  At around 9am, I called the doctor and begged them to squeeze me in.  I was able to get an appointment for noon.  I was dilated to a 3.  She stripped my membranes and put me on the waiting list at McKay Dee for the following day to be induced.  The only reason I was considering this was because Jon had called in (on his first day at Logan Regional, no less) and they gave him two days off. He had to be back to work on March 21.  I was feeling the pressure to have a baby ASAP.  After my doctor's appointment, we went for a quick walk and contractions started again.  When we got back to my parents, I took a nap with Benson.  Then went for another walk and this really got contractions going.  At around 8pm that night, McKay Dee called and said they had a spot open for 8am the next day.  I had to decide if we really wanted the induction or not.  I called my friend, Jen, who happens to be a childbirth educator and doula.  She had really good advice and helped me to feel a whole lot better about the whole situation.  I talked it over with Jon and we decided not to take the induction appointment.  I was more stressed about the whole situation than he was, but I guess that's what pregnant hormones do, right?!  My contractions were still going, but they weren't very strong and still quite irregular.  We played some games with my family that night and then I went to bed around 10:30pm.  But as soon as I laid down, the contractions picked up.  Sometime around midnight, I couldn't lay in bed anymore so I went and hung out in the bathroom.  I know this is going to sound totally weird, but I liked laboring by myself, in the dark, in the bathroom.  Ha ha.  I got in and out of the shower, laid on the floor, sat on the toilet, and tried to sleep.  Ha!  At 2:30am I woke Jon up.  I had been in the shower for a half hour or so and my contractions were about 5 min apart.  I sat down next to him and asked him to time a few.  I had one or two and then we were headed towards the ten minute mark before another came.  Frustrated, I told Jon to go back to sleep and I went back to the bathroom.  I was so exhausted!  My contractions were about five minutes apart and 45-60 seconds IF I was up and walking.  As soon as I sat down, they would slow down to 10-15 minutes apart, though they were really long and intense.  I didn't time them, but I bet they were closer to 2-3 minutes long.  At 4am, I decided I was done and would just go get an epidural so I could get some sleep.  I woke Jon up again (not that he had ever gone back to sleep) and told him I was ready to go and I would just get an epidural.  Just to show how weird these contractions were, I bet I had two contractions on the drive there, about 20 minutes.  Walking from the car inside the ER, I had two contractions, probably 3 minutes.  I opted for a wheelchair to get to L&D but continued having lots of contractions.  The nurses got the monitors on and then checked me.  I was at an 8!  Forget an epidural, not even an option at this point.  I was so relieved.  They immediately called the midwife and everyone started getting ready to have a baby.  It felt so weird to get there and have them already getting ready for a baby.  Jon told them I wanted a squat bar to push.  They got this out and we had time to adjust the bed how I wanted it.  Jon called my mom and told her I was at an 8 so she could be there for the birth.  They came in and got an IV going.  I opted to get some fluids since I was so tired, I was really lightheaded.  Best decision ever.  I started feeling so much better.  About the time the shaking started.  I shook a ton AFTER Benson was born, but not during labor.  This was a new experience for me.  I think I drove everyone crazy commenting on how I couldn't stop shaking. The midwife showed up and just kind of took her time getting things ready and getting ready to break my water.  Once she broke my water, I was complete within a matter of minutes.  Did I even have a contraction to finish that off?  I'm not really sure.  I just kind of sat there, not having any contractions.  Such a bizarre labor.  At this point, the nurse made an annoucement that there was a natural birth in room 4513, our room.  Next thing I know, there were like five nursing students hanging out in the back of the room.  Um, hello?!  And even weirder, one of them was a guy.  He was obviously uncomfortable though.  I actually had to start pushing before I had any contractions, because he was still at a station 0.  Once I got him past my bone, he came out pretty quick.  I finally got some contractions to help too.  Makes such a difference.  The midwife was amazing, making sure to take his shoulders out one at a time so I didn't tear.  Hallelujah and thank you!  As soon as he was out, we were all anxious to get his curled up bony little legs out of the way so we could see whether he was a boy or a girl.  Surprise, surprise!  Welcome second baby Brady boy!  Jon and I had a for sure girl name picked out and a couple boy names picked out.  When it was a boy, we were both surprised.  Jan, one of the nurses, asked what our other son's name was.  When I said it was Benson, she said she thought Brigham sounded cute with Benson.  I looked at Jon and said "I like that name."  It took almost a full day to make it official (it drove Jon nuts that I couldn't decide faster).  Brigham hadn't even been on our list, so it was kind of fun to have a surprise boy and a surprise name.  But I love it and I think it fits him perfectly!  And I actually like the nickname Brigg or Briggs.  He is starting to get his own look now, but at first he looked like a Benson clone with more dark hair.  We couldn't be happier.  Everything ended up working out just perfectly, even if I was a basket full of stress the day before.  Everyone is healthy, Brigham's bili scores were way low and we were able to be discharged after 24 hours.  It was the longest I had ever been away from Benson and Vanessa, and I was so excited for them to meet their new baby brother.  No kids under 14 were allowed at the hospital because of cold/flu season.  Vanessa adjusted quickly to the idea of a baby brother but couldn't remember his name for like two days.  Both of the kids absolutely love him though.  They want to hold him and kiss him and "pet him" all day long.  Poor guy is literally being mauled with love from them.  And to top off our blessings, I just got a call today from the genetics counselor, and Brigham's blood test came back NEGATIVE for SMA!