Monday, June 24, 2013


It's been awhile since I've written much of substance on the blog.  There are so many thoughts that I want to share.  On those days that I'm not hiking or participating in the torturous high-intensity workouts at the gym, I go for long walks around my neighborhood.  It seems like I have to keep moving to keep my sanity these days. It's during my long walks that I think, I pray and I compose. But putting my thoughts into an intelligible composition has been a challenge lately.

I'm struggling.

This year has been difficult for me emotionally. Jack is doing well. Me, not so much so. Why is it that the lull between the storms is always tougher than the storm?  The not knowing is tough, but the waiting it out (whatever "it" is) is brutal.  If that makes any sense.  I'm struggling to keep my emotions in check. It's ridiculous how often I find myself in tears. While I'm pretty good at giving the appearance of having my shit together, I can assure you that I do not.  

I'm struggling with how much to share.  There was a day when most of the people reading this blog were fellow trach moms - my sorority sisters (and a few of our fellow frat brothers).  We first met online at and from there, many of us have met in person - at our trach conferences and at moms' weekends.  It's easy to share with those of you who live (or have lived) the life.  With the advent of Facebook, the trach board camaraderie has all but disappeared as everyone has migrated to Facebook.  But, I always struggle with whether to link a blog post to FB.  I worry about what people who know me as someone other than "Jack's mom" might think.  I worry that people will worry about me (as in, "she's losing it").  I don't blog for pity, attention, sympathy or for my ego.  I blog because it's cathartic. I blog because it has allowed - and continues to allow, me to connect with so many amazing people.  Nevertheless, I still struggle with how raw I want to be.

So, yes - I'm struggling.  But, I'm okay.  As long as I keep moving, keep busy, keep escaping traveling and remember to just BREATHE, I'll be okay. Thanks for continuing to hang in there with me, for caring about me and for loving my Jack. 

Onward my friends.  Onward.


My mantras - worn on my wrist to remind me to

"Just keep swimming"
"Enjoy the Moment" and


Susan said...

Ann I'm sorry you're struggling. Maybe the lull between storms leaves too much time to think? I don't know but it makes sense that being physical and occupied helps. I'm looking forward to meeting IRL in October and finally getting to have that drink together. Also, I know what you mean about Facebook. If you notice I don't use my last name on Facebook (or the blog) and the account is only for Trach friends. (I need some degree of separation and privacy. Which probably is silly from someone who blogs.) I have been more active lately because I've been participating in the Cerebellar Hypoplasia Group. I'll always find your posts on my dashboard even if you don't post links on Facebook. Love ya. (((((HUGS)))))

E Fischer said...

Well Ann, I do believe that the relative serenity allows us to feel just how devastating the intense times were. You are paying the price of those intense moments when, as now, you recharge.
Understanding what those moments were emotionally also takes time and does not come with a handy description to make sense of them. You just feel them, often out of the context that you experienced originally.
Tears? I cry now if I see something sad in a Walt.Disney.Movie.
It is probably a delusion to think that we become stronger through these tough experiences since it wears on us. We do become wiser though, avoid commotion and extraneous effort better but that's because we simply can't do the things we used to do. The price.
But that's OK because we have achieved something. We put our effort into something so big and scary, that has some real concrete value. True, it appears fleeting, gone in a moment and on to the next catastrophe. But that is because these moments are not regular moments and part of the strain comes from trying to live them as regular moments.
The guilt is also enormous because you understand the degree to which an effort needs to be made.
You have rare sight, Ann and so you see just how bright the light is.

Cindy said...

Just Keep Swimming... (can't wait for "Finding Dory") {{{HUGS}}}

Elizabeth said...


Dana said...

I wish I had profound words for u. I don't. So I will just remind u to be gentle with yourself. We may have to sprint for moments on this journey but it's in the steps that we learn how to deal with our load. Cry, breath, walk, and find the peace u need to keep swimming.

U have been on this path a long time.

I am still here reading and soaking up your wisdom. Thanks for sharing.

Btw--Rachel (Gabe's mom) and I were able to meet last week. It was sureal. We remembered that we found each other through your blog. We live close enough to lean on each other a little. :-)

Dana said...

Also-- How r the girls? What is Hillary doing these days? How did Mary like school?

Anonymous said...

I'll tell you...I am in your shoes lately. Sometimes I wish I could swim away forever into the horizon. Hugs Whitney

Ann said...

Thank you all for your supportive words. xo

Kathryn Watts said...

Hi Ann, I'm Kathryn my son is 16 is spastic quad CP, has GJtube, trached & on a vent. I think I could fit in your sorority :) Funny I was just thinking I need some support , a friend some ppl in my life that "get it". I've been lurking on the message board for Aarons trach but nothing is going there. I've been looking around everywhere because lately I'm going crazy. Fed up with my nursing agency, & fighting with my insurance company has become a part time job. I need to find, talk to & interact with some ppl who ate living this life! Hoping you will see this & maybe direct me to your current group, FB page or somewhere to join....I'll be checking back to see if you post a response look forward to hearing from you. thx