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!