Friday, December 18, 2015

The Most Wonderful Time

Greetings to all!  We have had a busy month, and Isaac has been doing really well.  We had a quiet Thanksgiving because I had just had hernia surgery earlier that week.  I made a pie and mashed potatoes, and served turkey sandwiches.  Isaac fell asleep watching football and missed most of the meal, but he woke up in time to watch us eat dessert.

My brother came down from Montana for a short visit during the first week of December.  It is always great to see him, and Isaac and Natalie can't get enough of their Uncle Dan.

One of the mothers from Natalie's preschool, Kendra, invited our family to join her family for a private visit with Santa Claus up at the mall in Loveland.  She had reserved time, and knew that we were unlikely to take Isaac out in the cold or to wait in line with tons of other adorable and potentially germy kids.  It was an offer we couldn't refuse, so early one Monday morning we hurried the kids through their morning routines, dressed them up in their Christmas outfits, and went to visit Santa.  Kendra took some great photographs on her camera for us, brought cookies for the kids to give to Santa, and a copy of The Night Before Christmas. Santa sat and read the story to Natalie and Isaac, showed them how to make candy cane hearts, told them all about reindeer food, and listened as Natalie told him all about what she wants for Christmas (and then all about our cats). It was so sweet to see her snuggle close to Santa as he read, and to see how Isaac stared at the large red man in interest and amusement.  I decorated our tree and broke out the decorations right after the first Sunday of Advent, because I can't help but be in the Christmas spirit with these two little sweethearts in my life.  Natalie loves to play with the various manger scenes and statues of the holy family, as much as she likes to walk around pretending to be Santa.  It's just wonderful!

Our good friends, the Goulds, also took Natalie to see Santa Claus and do crafts at the library.  She had so much fun being with her friends, and it was so good for her to get out with them!  That same night, Natalie's preschool had a float in the local lights parade.  Jeremiah and I bundled Isaac up and took him to watch the parade.  He stayed warm and bewildered the entire time, being outside after dark and seeing a crowd of strangers on our normally empty main street.  But he didn't freak out, which is honestly what we expected of him!

Natalie's preschool had a Christmas program last night, which was just as sweet and funny as you would think.  A bunch of three year olds, dressed as angels and shepherds, singing the words that they knew, some of them struck dumb with stage fright, others twirling and shouting and hamming it up.  Isaac wasn't sure what to think, but he was amused at least with seeing his sister up on stage.  I'm so glad we were able to take him, despite the snow making it impossible to use the ramp around the back side of the old, historic church (the one from a Die Hard movie!).  We had the help of another dad, plus Jeremiah and my dad, to hoist Isaac and his stroller up the front steps.  Isaac loves being around other kids, and a couple of Natalie's classmates have met him before and aren't too shy about saying hello.

A few weeks ago, we decided to try getting Isaac ready early enough in the morning to attend a local song and story time.  We were a bit late, but it was worth it!  We got to see a good friend of Natalie and Isaac's, a 7 year old girl who used to live across the street.  She would come over almost every day to say hello, and many days she could stay for a while to play.  She was amazing with Isaac, giving him choices, building towers for him, putting on shows.  We hadn't seen her since they moved on Halloween, and she immediately came over to say hi.  She spent the rest of the story time including Isaac in the music making, the coloring, the whole activity. Unfortunately, she isn't usually at story time (turns out the elementary school doesn't always have a late start...). But she set a great example for the younger kids, who don't know what else to do with Isaac besides look at him with curiosity.  We have gone back every week since then, because it is only a few blocks from our house, they tend to start a little late, and I love helping Isaac participate in such a normal, toddler activity. It starts the day off well, and gets us all out of the house for an hour.  And I can't say enough for the woman who runs the story time, she takes care that Isaac can see, that he gets a turn to touch things and hold things, and she cleans the shaker eggs after every session!

We also took the kids to a craft day at the Longmont Museum,  It's called Discovery Days, and it's something the museum hosts three days a week.  Each week is a different theme, and last week was transportation. Isaac loves trains and cars, so we thought he might get a kick out of it.  He did enjoy holding the paint brush to paint a cardboard rocket and a wooden fire truck, but he cried whenever I took it away to get him more paint.  This was our first time going, so we didn't have a clue what to expect.  When we arrived, the nice woman in charge asked in shock, "You didn't pay for two kids did you?"  I said yes, since we had two kids. She replied, "Well, yes, but...he...he won't...he can't..."  I saved her from her trailing sentence by saying "We will help him make the crafts."  I know she was probably just trying to be considerate, to save us a few dollars, but it still struck me as so odd.  I forget that many people are taken aback when they see Isaac.  I forget that people see him and see a disability.  I'm so glad that I forget that, but it can take me a moment to recover when we encounter someone who isn't sure what to say.  I suppose that speaks volumes for the people we normally encounter in a week-our entire church community, our neighbors, local business owners, family, friends, my co-workers.  They all see Isaac for the whole person that he is, instead of being distracted by his mask or his machines.  One of my favorite parts of the week is taking Isaac to Mass.  He loves being there, for one thing, sitting way up front where he can keep his eye on Father Alan, the servers, the lectors, the crucifix, the alter, the flowers, and the angels.  But I love seeing the people walk past him after they have received communion or a blessing from Father.  Some people are in prayer, and their eyes are downcast reverently.  Adults who know us better will smile at Isaac, give him a wave, a little squeeze on his arm, or a blessing.  And the kids, they are the best.  Last week, a little girl of about 18 month just stopped right in front of his face, flashed him a huge grin, and waved, practicing her "Hello!"  Then a young boy, maybe 10 years old, was watching Isaac (who was watching him back) as he slowly walked past.  Suddenly, the boy laughed out loud and smiled at something Isaac had done.  That kid had the most honest look of joy, just making a connection with Isaac.  I love watching the children, they don't try to avoid look at Isaac, they don't hide that they are curious, and they aren't afraid to ask us or their parents what happened to him.

Isaac has been a rockstar with his eye gaze device!  Last week, when Natalie was gone for the morning, Isaac used his talker to say "Natalie, let's watch TV, Veggie Tales."  Then he said it again, and again, and again.  We kept telling him that she would be home later, but for now we were keeping the TV turned off.  We would get him to play a game, and he would exit the game and repeat his request to Natalie.  An hour or so later, after he had been playing a memory game contentedly, Natalie came home. I asked him to tell Natalie what he wanted, and he immediately left the game, found his Natalie page, and told her he wanted to watch Veggie Tales with her.  He has been similarly amusing with his requests to read specific stories, repeating himself over and over because he can't ask more loudly or in a more insistent tone of voice.  It's amazing.  He has memorized the placements of the 6 cards for his memory game, so he breezes through the game over and over.  We have watched him win the game and start again 10 times in just 2-3 minutes.  Again, he's amazing.

And he's growing!  We had to increase his calorie intake, his lung volume, order a larger stroller, and get him another full-size crib for the living room (where we do his breathing treatments and he takes naps).  I'm grateful for every milestone.  I always see people posting pictures of their little kids, lamenting how quickly they are growing up.  I say rejoice in their growing and changing!  It's an amazing gift.

Christmas is one week away, and I hope that you all have time to be quiet, to be disconnected from all of the news and the social media, to be connected to God and your loved ones.  I ask for your prayers for those who have lost someone this year,especially: for the family of Pastor Laura, who finished her fight with sarcoma a few weeks ago; for the family of Auni Naulu, who would have turned two years old this month, but is instead in heaven; and for the family of Gwendolyn Strong, who never gave up, but was ready to go, and who has inspired thousands of people with her living and dying.  There are many other parents who lost their children to SMA this year, and my heart goes out to them during the Christmas season.  God bless you all, and Merry Christmas!