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Wednesday, September 6, 2017

Ch-ch-changes





It is said that no news is good news...in this case, the past 8 months of radio silence on this blog is mostly due to life.  So that, I suppose, is news that's good enough!  The last time I posted, I told you that Isaac was officially starting preschool.  I can't really believe that spring and summer have come and gone, and I haven't updated a single time!  My post tonight will try to be a catch all for the big happenings of 2017.

In February, Isaac turned 3 years old!  We had an awesome birthday party for him with lots of friends and family and great food and cake and the magician was hilarious.  The weather was perfect, and I think everyone enjoyed themselves.  We were able to send over 100 little sea creature toys to CureSMA for their care packages, thanks to all of the donations! That month, we also managed a 'random perfect weather in February for the zoo' trip.  Isaac and Natalie both rode the carousel and the train, and all of the animals were out enjoying the sunshine.  Jeremiah and Natalie attended the Butterfly Kisses dance (a daddy-daughter dance), just like last year, while Isaac and I stayed home and watched Pete's Dragon.  And of course, Isaac started preschool!  Crazy!

Watching the magician at his party
Butterfly Kisses dance
Epic Octonauts birthday cake- thank you Susan!

First day of preschool for Isaac!

A warmish February day at the park

March was a big month for our family. I started working at a nearby hospital in the University of Colorado Health system.  It was a big decision, but since it was just PRN, it felt right for our family.  The orientation was full time for two weeks, which was longer than I have been away from home and the kids in years. Jeremiah rescued a special little kitty from the junkyard. She is the sweetest thing and took an immediate liking to Isaac.  We also bought an inflatable hot tub for Isaac to float and swim in, though I confess I have been in it much more than he has...
Swimming!
Kitty snuggles



In April, several of Jeremiah's aunts and an uncle came to Colorado for a wonderful visit!  None of them had met Natalie or Isaac yet, and it was so nice to have them here and spend quality time with them.  We all went to the Wild Animal Sanctuary, which was really neat and definitely a recommended excursion.  Of course, we celebrated Easter with an egg hunt and some fancy egg decorating.  Our neighbor, Virg, put her house up for sale, and we were so sorry to see her leave. We loved visiting her in the evenings and playing with her dog up on her front porch. Another neighbor passed away, and her house was sold to a really friendly man with a 6 year old. New neighbors all around!
Easter egg hunt!

At the Wild Animal Sanctuary

Easter Sunday with the most beautiful family ever :)


As is true for any family with kids in school, May felt pretty much rushed and insane. School programs and recitals and...well honestly I just don't remember much of May.  I do remember that Isaac received another injection of Spinraza, and it barely slowed him down at school the next day.  Natalie played her first season of soccer.  She loved it, but definitely preferred practice days to game days.  Isaac took a field trip with his preschool to the Butterfly Pavilion. That was pretty much chaos, but he did get one to land on his head!  After preschool ended for Natalie, she cried almost everyday for a week.  She already missed her beloved Ms. Sheryl and was just so sad that she wasn't going to see her all of the time anymore.  
Natalie and her amazing preschool teachers, Ms. Tina and Ms. Sheryl.  We love you!

Butterfly Pavilion

Mother's Day

Isaac's new swing!



June was another busy and wonderful month. My family came from all over (Montana, Iowa, and Illinois), to spend a week up in Estes Park with my parents.  I love all of them so much, and there isn't much better than seeing our kids all together. We attended a retirement party for Isaac's respiratory therapist.  Monte has been an influential and much loved part of his team since day one, and he is already so very missed. But we wish him well!

 
Monte! Don't go!

Out for a walk with the cousins (minus one J.D.). They all make our big girl look so small!

Enjoying the cooler evening weather, and stealing baseballs off the school diamond.

















And then we come to July! Natalie had her fifth birthday!  She asked to go to the Downtown Aquarium, so we celebrated with a mermaid show and then dinner at home with Grandma Sharon and my Aunt Pam and Uncle Neal.  Jeremiah arranged a spectacular (but still legal and safe) firecracker/sparkler show for the 4th.  My cousin Camille and Aunt Irene came by one evening just before my cousins Brendan and Amanda moved back to DC.  I haven't seen Camille since our wedding, since she lives in Ireland.  And now she is married and expecting a baby!  It was a short visit, but I am so grateful they were able to make the stop by our house because I just love them all!  In July, I also decided to apply for a full-time job at the new hospital that was buildtin Longmont, also part of the UCHealth system.  I was offered the job, accepted, and started to mentally and emotionally prepare for the world of working away from home 5 days a week.  I hadn't wanted to return to work full-time for another couple of years, but Jeremiah and I were constantly stressed about paying bills and stressed about my random PRN work schedule.  This opportunity was too good to pass up, so I told God that I would just apply, and if it was a good choice for our family, I would get the job.  If it wasn't the right time, I wouldn't get the job. Not long after I accepted the position, Jeremiah and I looked more into the parent CNA program that Isaac's nursing company offers.  We decided that he would become a certified CNA in order to work from home as Isaac's CNA.  And that brings us to August.  But first, pictures!

Sparklers!
Natalie, Amanda, Camille, Irene, Jeremiah, and Isaac

Our 5 year old!!!!


And so, August.  I started my new job on July 31st.  I should clarify that by full-time, I mean 6 hour days, not 8 hours.  But still. It's a lot.  Jeremiah also started his CNA training the first week of August, which was full-time for two weeks.  During those two weeks, the kids also both had their first days of school! Thankfully, my parents were each able to come stay with us for a few days to help.  Seriously, without them and Jessica, we wouldn't have been able to both be gone all day for two weeks. It was generally exhausting for everyone.  Jeremiah takes his state certification test next Saturday, and he will soon be on the payroll as a CNA!  At the hospital, we spent the month orienting to our brand new building and getting it ready for the state inspection.  We opened one week ago, and I'm looking forward to getting busy at work!
Natalie's second day of kindergarten, and Isaac's first day of preschool this year!

End of summer splash park day!

Although it is only the first week of September, we have already had a lot going on.  This past weekend, we took our first family trip to somewhere other than my parents' house.  We drove to Grand Junction to see Skillet, courtesy of the organization Do It For the Love, who paid for our tickets, travel, hotel, and arranged a meet and greet with the band.  My friend Chris nominated Isaac for the grant, and he was awarded one! Look up the organization if you get a chance.  It was so cool, the concert was amazing, both kids behaved very well and fell asleep at the end (which is impressive, if you have ever heard Skillet).  The trip went smoothly and gave me a little more confidence for traveling in the future.  This Friday is Isaac's next muscle clinic appointment, which will be his first appointment without the great Monte.  We will try to be really nice to his replacement, since she is probably under a lot of pressure to be awesome.  To give you an idea,  Jeremiah, Jessica, and I can't remember her name, and we call her "Not Monte."  Isaac's next injection in this coming Tuesday, so please pray for it to go well!

The other, newest, biggest change for us is the news that our amazing nurse, Jessica, has been offered a job at a hospital.  We are so happy for her, because we know that spending your entire work week in someone else's living room has to be challenging.  We are all hoping that her schedule will work out that she can still work one day a week with Isaac, but that is all up in the air for now.  Basically, Jessica has become part of our family.  She has been with us for over two years, since Isaac was a baby.  Natalie is always disappointed that we only see her four days a week.  She is the only other person who we feel comfortable leaving Isaac alone with for more than an hour.  To trust someone with your child's life is no small thing. She cares for him, knows him, advocates for him, challenges him, humors him, and loves him.  I knew this day would have to come, and now that it has I am pretty much trying to avoid really dwelling on it.  I get a little panicky when I think about what it will be like without her in our daily lives.  So, please, pray for Jessica as she begins this new, exciting phase of her life. And pray for us that we will find the help that we need where we need it, and that Jessica will be able to visit us often.   And Jessica, if you read this, look back at it often to remind yourself how appreciated and loved you are, and that our door is always open to you, and not just as Isaac's nurse.  
1/16 of a mile into our road trip to Grand Junction!


Tuesday, January 10, 2017

Drum-roll please....

IsaaIsaac's going to pre-school!

Earlier today, Jeremiah, Jessica, and I took Isaac to his Child Find eligibility and IEP (Individualized Education Plan) meeting.  We knew he would qualify for services, so the eligibility part was more of a formality.  I was nervous about the IEP part, not knowing what goals they would suggest or if we would have to fight a team that we would rather be working with than against. It turned out so well, better than I expected, and with fairly impressive efficiency based on the number of people in the room.  We learned that our local elementary school has an opening in the MWF morning preschool.  We had imagined getting Isaac into a Tuesday/Thursday class to help ease us into this new and exciting routine, but the preschool teacher made the great point that, if he has three days a week available to attend, he won't miss out on as much if he needs to be gone for an appointment.  It also gives more time for the therapists and special educators to get into the classroom.  The therapists that Isaac will have at school will focus on helping him access his education and his school experience.  They recognize that Isaac does not have a cognitive impairment, he just needs significant support to communicate his wants and needs, to express himself and what he knows, and to participate in all of the fun stuff that preschool has to offer. He will be in the general education classroom, with no modifications made to what he is expected to learn. I'm already a huge fan of the preschool teacher and the therapists, and the special education coordinators, seeing how well they communicated with one another in this meeting and how clearly they respect each other's professions and roles in the school. We were so grateful to hear that the plan includes a full-time paraprofessional for Isaac, which mean someone is dedicated to helping him, hand-over-hand, with activities in the classroom.  Either his nurse or I will be in the classroom for Isaac's medical needs, which was another fight I was expecting that turned into a non-issue.  I know parents in other states or just other school districts who have had to go through a few hoops to be able to attend school with their child for medical reasons, so I was relieved to hear that I was not expected to go through said hoops. (I would like to pause here to reminisce about a time that my friend Erin and I went to a town meeting when we worked as homeless prevention and outreach volunteers, and a rather notorious local figure asked us, in his best "I'm intimidating and you are but young 20-something girls" voice, if our clients at least had to jump through some hoops to get financial assistance with their rent.  Erin replied, "Well, they aren't circus animals, so no, they don't jump through hoops, but we do have a detailed intake process."  If she hadn't already been my hero, that was the moment she became one.) 
Back to preschool.  At some point in the meeting, toward the end, someone spoke up to say, while glancing between her calendar and her paperwork "So, let's see, Isaac turns 3 on February 11...That's a...Saturday...So...he will staaart... on February 13th."  Jeremiah and I looked at each other and at Jessica and at Isaac, like "Oh! Okay! Let's dive right in!"  It is what we wanted, but I had imagined some extra wait time for paperwork or whatnot.  So now, starting February 13, Isaac has preschool MWF mornings, Natalie has preschool MWF afternoons, and we will fit the rest of life (speech therapy, physical therapy, dance class, gymnastics class, swim lessons, doctor appointments, proceduces, and, um, WORK).  Suddenly life as a parent to a special needs child got busier, and I thank God that we are at this point.  Seriously, Isaac is starting preschool.  Let that sink in.  Go back and read our posts from the first month or two after his diagnosis, and then come back and read those words. 

In other news, his third birthday party is planned and it will be awesome.  There will be a magician.  And magic bunnies. And BBQ (pork, not bunnies). And Octonauts themed cookies. And Isaac!

We can't thank you all enough.  Without your support and prayers, I don't know where we would be, but I don't think it would be here.  

  saa

Sunday, January 1, 2017

A New Year! Make it Happy! And a million pictures!


I have spent some time this week trying to organize photos from the past year, which is always a pleasant walk down memory lane.  We had a really great year, overall, and I'm hoping for 2017 to be great as well.  The thing is, a year is a pretty long time, and any year is bound to have some good days and bad days, some easier weeks and harder weeks, some great weather and some horribly hot or cold weather, some illness, some fun, some family, some death, some life.  A life in pictures will most likely illustrate the better days and the best moments, the stuff of photo books and calendars and online albums for the world to see.  The rest of the moments are either dull or hectic or exhausting or sad and we wouldn't even consider taking a picture.  I wouldn't add a photo of Natalie crying because she missed us when we were gone all day at Isaac's appointment. No, I post the picture of Isaac napping in the car on our way home. I don't want to flip to February on my (as yet) unfinished calendar and be greeted by a picture of me angrily throwing bowls around the kitchen because I am so stressed out about finances and family that a failed cheesecake makes me cry.  Instead, I post the picture of the kids licking off the beaters after helping me make said cheesecake.  I don't snap a selfie of Isaac and me after his breathing treatment as I suction him and clean his mouth. I ask Natalie to smile as she colors at the table or pretends to be Supergirl.  We smile, genuinely, for a family Christmas picture, grateful that, once again, we are all together.  Behind every perfect or adorable photo you see on social media is a whole reality, a real person, and a whole lot of life goes on behind that camera.

I recently read this fantastic post on the blog Unstoppable, written by Jon Morrow, a young man (younger than me, at least), a millionaire, with muscular dystrophy.  He lays out for the reader some of his most unpleasant memories, and how he chose to survive and eventually benefit from the hard stuff.  I recommend it with a disclaimer for some language and the recognition that he writes from his own experience, not that of a psychologist or a social worker or a doctor.  A few of my favorite quotes are:

"At some point or another, life punches everyone in the face.
The punch may be hard, or it may be soft, but it’s definitely coming, and your success or failure is largely determined by the answer to a single question: how well can you take the punch?"
"A lot of people view acceptance as weakness. They think that, if they accept what’s happened to them, they’ll be admitting defeat. But it’s the opposite. It’s only by acknowledging reality that you can create a plan to change that reality. Acceptance, as it turns out, is the first step to victory."
"We’ve all heard the cliché about turning lemons into lemonade, but to do that, you can’t be pissed off at the lemons, go into denial about the existence of the lemons, or get depressed because you’re tired of making lemonade. You just have to grab a lemon and squeeze the s*** out of the motherf****r."
What am I getting at here? I guess I just want to encourage you.  I keep hearing about how 2016 was a bad year, a terrible year, and good riddance.  I hear mixed reviews on 2017, either no hope for it, or a desperate hope.  It's as though the year itself, the marking of the passage of time, is to blame for the bad, to laud for the good.  Let me tell you, the year is not the decision maker.  Before putting the kids to bed tonight, I asked them to tell me what they want to do this year.  Natalie had to think about it, but she finally decided she wants to read some special books. Isaac liked the idea of visiting a new aquarium. Jeremiah wants to lose weight and work on his car and house projects, maybe race his bike again.  I want to take a family trip back home to Illinois and start family game nights.  These are not deep thoughts or impossible tasks, but I guarantee that something will get in the way of most of our goals for the new year.  So what is to be done? How do we hold fast to our resolutions and remain free from discouragement?  The answer is in not ignoring the hard stuff.  My camera will be filled with happy snapshots to enjoy and to share with others.  I want to remember those moments. And while I don't wish to remember the details of the dull, hectic, stressful, or sad times, I should probably try to remember what I learn from them, This year, I resolve to take a few minutes, a few nights a week, to examine my conscience.  What actions did I take or fail to take, what words did I say or fail to say?  Can I offer up the hard stuff for the good of someone else? What should I do or say differently, to be a better Christian, wife, mother, daughter, sister, friend, co-worker, neighbor?  Each day is made up a million moments, hundreds of little choices.  My hope for 2017 is to be more charitable and loving in those choices.  Who knows? Because of one better, kinder, more loving choice that I make, maybe someone else's 2017.  That would be nice.
And now, for a year in review! In pictures! It's better if you ignore the formatting all together and focus on how cute Natalie and Isaac are.  
January
A family photo, taken just after New Year's 2016

Natalie, eating dinner in just her cape, while Isaac plays with penguins.  This was not entirely atypical...

Jeremiah and Isaac, chilling on the couch

February
Changing a car battery, in February, in shorts.

Isaac's 2nd Birthday!

All dolled up for family pictures

Jeremiah and Isaac, snuggling and playing



March

Grandma and Grandpa Boostrom!

Again, Jeremiah and Isaac, snuggling, with Natalie 

Easter with my cousins, more Boostroms!








April
Painting canvases!

The zoo!
Snuggles!




May
After Natalie's ballet recital

Snuggles!

My sister and I went to see Paul Simon!

Cookie dough!

June


More Daddy time

Craft time at the YMCA with the Boostrom clan

Trying to get a good angle for a family picture... 


July
Watching Le Tour de France

At the splash park on Natalie's birthday

A horse happened by our house...
August
Sister assisted coloring

Sword fight!

Meeting a kitten on his half birthday

Trying the giraffe mask...




September
I have NO pictures from September, and I don't think it's because I was too busy with crappy stuff...
October
Our little beauties- more family photos

Captain Barnacle and a Ninja!

Camping!  Or, at least, hanging out in a tent!

November and December
I am fighting a losing formatting battle, so these months go together.

Before his first treatment
Natalie was too sick to attend her preschool Christmas program,
so she gave us a private showing :)
Breakfast with Santa
Christmas Eve
Natalie and I after Christmas Eve Mass
Breakfast with Santa

The Nutcracker! It's really him!
Jeremiah and Isaac after Christmas Eve Mass