Wednesday, January 29, 2014


Another long silence...  In my defense, the kids have only had ONE school day since January 17th!  Crazy snow days.  I wish I could say I've been having fun with the kids.  But I would be lying.  Honestly, I don't have a lot of energy left over for "fun" with the kids.  And the boys want to go out and play and Harlie doesn't (and probably shouldn't).

Here are the photos I took during the brief eight minute span that Harlie spent outside during our first snow last week.  Seriously, eight minutes and she was done.  I could barely get her to stay still for the last photo.


Cooper "sledding" down our driveway.

Rooney.  He eats the snow.

Cooper, Harlie and Murphy.

Yes, the kids were out of school for FOUR days for this snow "storm."  You can still see the grass!  Too funny.

We got more snow last night (Tuesday) and they were out today and they are going to be out tomorrow.  All the excitement of snow days are gone.  When I told Murphy he was like, "Oh, okay."  The first night we were like, "Hey! Guess what you guys have tomorrow...." asked in an excited, high pitched, tone of voice.  Now it's, "Hey, no school again tomorrow."  Told in a monotone, someone kill me now, tone of voice.

I have more updates on our day to day life I still need to write about.  I've been struggling with what to do with Harlie, medically speaking and what to do with her schooling.  But I think I am finally getting somewhere.  I'll have to save that for another post.

I started working a part-time job.  And trust me when I say PART TIME.  I am taking that term to a whole new level.  Especially with all of these freaking snow days.  Luckily, my boss is very flexible and understanding.  Thanks Bill! (He's Bill Jeffries, who is the creator of The Harlie Crew you see on the left side of my blog.)

But, for now I want to write about my trip to Arizona to see my friend, Ann and attend Jack's celebration of life service.

I left on Thursday the 16th.  Somehow we managed to all arrive around the same time.  I met my friends Sarah and Susan (from the pictures from my last post) at the airport.  We rented a car and drove to Ann's house.  I've seen pictures of her house on her blog for years.  So, I felt comfortable in her home instantly.  We all went to lunch, including another friend of Ann's (Erin) who lives there.  Coincidentally, Erin's daughter had a trach in the past (I think that's how they met).  After our late lunch, we hung out at Ann's house in the backyard by the fire.  We got to spend a lot of good, quality time together, which was great.  Then we (Susan, Sarah and I) went and checked in our hotel.

It's a little bit of a challenge to get used to the time change.  So, I woke up earlier than the girls.  So I went for a run.  I was a little nervous because I only packed a pair of running shorts, a tank and a visor.  When I looked at the weather from home it seemed like it was in the 70s during the day and cold at night.  Well, I checked the weather on my phone and it said 36!  Ugh!  But, once I got out there in the sun, it really was great.  It was perfect running weather.  Despite traveling the day before and drinking the night before, I had a great four mile run!  Even though it was a day early, that was my run for Meg Menzies.  Jack's service was on Saturday, so I knew I couldn't run that day.

My scenery during my run in Chandler, Arizona.  
On Friday afternoon there was a memorial hike for Jack.  We got brunch and hung out until it was time for the hike.

Sarah, Susan and me.

Then we hit the trail.

We stopped for a break here and got in a circle.  We took turns telling each other who we were, how we knew Ann and Jack, and shared some thoughts or memories of Jack.

It was an emotional time for all of us.  Pretty amazing to hear how much Jack affected those who knew him and even those who didn't.  There aren't a lot of people in this world that can say that they never walked, talked or moved purposefully, yet did so much for so many people.  I felt so honored to be there and to have Jack in my heart.

The scenery was beautiful.  Pictures just don't do it justice.  Especially when I'm taking them.  Sarah took the sunset one.  Not me.

After the hike, we went to Erin's parents house where they hosted a wonderful mexican dinner for all of us.  Their house is gorgeous and has a beautiful backyard with a pool.  It is the perfect entertaining house!  I wish I had taken some pictures!  Ugh.  Anyway, someone at least got this picture.

Standing: Whitney, Sandra and Ann.
Sitting:  Me, Sarah, Pat (Erin's mom), Erin, Susan and Carrie
All of us (except Pat) have or had a trached child.  And me, Sarah and Susan are the only ones whose children are still trached.  I can't tell you how awesome it was to be surrounded by trach moms.  We were instant friends, or as Ann affectionately refers to us, sorority sisters.

Saturday was Jack's celebration of life.  It was difficult, and beautiful.  One thing I've learned about me is that I am not really good in serious, somber situations.  I seek out humor to get me through.  And sometimes that can appear as inappropriate from someone who doesn't know me.  Once we sat down, I was a little overcome with emotion and to seek humor (albeit in a sick way) I said to Sarah, "When it's my turn, I want you to come."  And then Sarah started to cry.  I told her I was sorry, I didn't mean to make her cry.  She said it's sad that I have to have those thoughts.  (But, when you're told that your unborn child has a 5% chance of survival, has heart defects, lung defects and airway issues, it's unavoidable.)  Then she told me she would play the piano and sing.  And I said, "Thanks!  That would be awesome!"  And we both smiled.  

I know that sounds totally weird.  But, that's just the way things are when you live a weird life.  I really just try to go with the flow, you know?

The service was really beautiful - as far as those things go.  And it was definitely difficult for a lot of us.  Clearly, I can visualize myself in Ann's shoes.  And that didn't help.  I think it's safe to say that most cried on and off throughout.

A lot of people spoke and they all did a great job.  Jack's sister spoke and was funny and adorable and so sad at the same time.  I think a couple of his cousins spoke and they did a great job, too.  One of Jack's doctor's from years ago came to attend the service from Los Angeles. He spoke as well.  As the parent of a special needs child who sees a lot of docs often, I was appreciative of him caring enough about Jack and Ann to be there.  Some of these docs mean a lot to us and our kids.  And we can get attached.  I love that he felt the same way towards them.  And Ann and Mark spoke. I have so much admiration for them.  They did great and wrote beautiful pieces.

Ann had stones for us to take to remind us of Jack.

I took an "Onward" one.

After the service, we walked to the graveside service.  I was okay until I saw them hold his ashes.  I couldn't take it anymore.  And I wasn't alone.  It was such a heartbreaking sight.  It's so not right.

At the end of that service we sang When Irish Eyes are Smiling.  And I got to hear Sarah sing - and she has a beautiful voice!

After that, we went back to Ann's house for a reception.  Is that what you call it?  Anyway, they had great food and a wonderful set up in the backyard with heaters.  It gets cold there at night!  But I love how they still sit outside.  It's great.

We ended up eating two meals there and hanging out, talking, laughing and enjoying our time together.  What a wonderful group of trach moms!!!

Sorority Sisters.
From left to right: Sandra (Texas), Whitney (Colorado),
Erin (Arizona), me (Virginia), Ann,
Carrie (New Jersey), Sarah (California),
Jenny (Missouri) and Susan (Washington).
Ann is amazing and I think it's obvious how much she means to all of us.  Every single person in that picture will tell you that she was instrumental in our survival of this life as a trach mom.  What a gift to all of us.

The next day, Sunday, Ann had brunch for all of us who traveled from out of town.  I meant it when I said we got some good, quality time together.  Ann's family did an awesome job with the food - it was all so good!  And it was a beautiful spread, too!  We really felt special being there.

Then we gave Ann a break from us.  A few of us went back to our room and hung out.  We had the Patriots vs. Denver game on and I got to watch the Patriots lose.  Awesome.

By dinner most had left to go back home.  So it was just me, Susan, Sarah and Jenny.  We went to dinner and got these in our fortune cookies.  I can't remember what Susan's was.

Sarah's, for Jack, of course.

Weird, considering I was about to take a flight East!

This was Jenny's - and she had never
met the three of us before this trip.  

Then we went back to Ann's to have one last drink, and say goodbye.  :-(

Then Sarah and Susan drove me back to the airport (my flight was at 11:45pm).  And we had to say goodbye.  :-(

So sad.  

Despite the difficulty of the situation, it was wonderful to spend time together and meet more of our "sorority sisters."  Good people.  Wonderful friends.  I'm truly blessed.  

Much love,
Christy xo


Betsy said...

Glad you were able to have a good time when it was for such a sucky reason.

Susan said...

Christy I'm glad you wrote out the details of our trip. My post about it took another direction and then I didn't have the energy to give the details.

Here is the link to mine. It said "This week you are the captain of your destiny. Feel empowered!" And I do. It was a life changing trip and my fortune cookie said so. :) Miss you my "sister".

Anonymous said...

Instrumental to our survival indeed! Hugs to you and your family. Whitney