Wednesday, March 23, 2016

My Life Line


Two years ago today our local paper published this story about our family - Turning Hardship Into Hope - about how we choose to share Jack's story through blogging. The message we wanted to send was that the internet often gets a bad rap, but for those of us with medically fragile kids, it can be a life line.

I still believe that.

And this month marks seven years that I have been writing here. I started writing when I was pregnant with Jack. I was thinking this morning about how much the act of writing has been instrumental in my healing after his birth and in helping me find my way in this world I knew nothing about. I am not a writer. Most of my scholarly writing is pretty technical, so this "personal" take is often out of my comfort zone. And being vulnerable to an audience of friends and strangers is its own unique thing. You open yourself up to opinions and scrutiny, but largely, you open yourself up to a whole lot of love.

I know times have changed and blogging has changed with it, but I still can't bring myself to shut the doors on this little space.

This past month has been overwhelming. It was just one thing after another dealing with Jack and his needs. Nothing big, no surgeries, no crisis, but the daily grind of therapists and specialists and rehabilitation has left me feeling like we can never do enough for this kid. We have a running, never ending to-do list with him and not enough hours or energy left in any day to do it. The thing about having a kid like Jack is there is ALWAYS something you should be doing. So you always kinda feel guilty if you're relaxing at all, because relaxing means you're not working, and not working means Jack may not have as good of a shot at, well, life. And so we constantly weigh letting everyone rest and live a "normal" life, or we decide to work on x, y, and z.

I've come to understand that unless you have a child like this, you probably won't understand the weight of it all. And that's OK. It often takes too much energy to even try and explain it, so most of the time, us parents of medically fragile kids just keep treading. Just keep trying and moving and working on the list.

I was feeling like no one could possibly understand this grind, but then I remembered you guys. The people who read here and who have kids like Jack. When it comes down to it, I think my writing here is just so I can get an occasional "amen!" and then feel better about it all. The encouragement and the acknowledgement that others are going through the same thing right now, that there is nothing new under the sun, is what I can't let go of.

So seven years blogging and I still need ya. I still think this place is my life line. As others move away from words, I will still write here and use this place to let you know how Jack is doing, how I'm doing, and really, just hoping that "amen!" comes in loud and clear.
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14 comments:

Sarah said...

Amen!

And also, your entire family is an inspiration. You inspire not only people who have the same concerns and daily grind as you; you also inspire people with different challenges life has thrown. Because if a baby so tiny and fragile can grow to a young man and wake up every day to wear his parents out, then there are many things that suddenly seem possible.

I'm sure there are moments when you would rather that you knew nothing about what your normal day is right now; but you are a voice for others who are still so deep into overwhelming things that they cannot even gather their thoughts enough to write their frustrations and victories.

We're here. We're cheering for all of you.

Kim said...

I am in the UK and have been following your journey since I had my own complex little preemie just over 4 years ago.
In the early days your posts gave me hope that all would be OK, whatever we were to face. Now I just love catching up on Jack's progress and how you are all doing. Everything you say (especially this post for me this week! Overwhelmed to say the least!) makes me feel a little less alone in this journey - just wish you were round the corner to have a coffee with lol!

Anonymous said...

Amen!

Ms. Griggs said...

AMEN!!! You just described exactly how I feel everyday and my Jack is only 9 months old. I've tried talking with my friends who are supportive to a point, and then just sit speechless with blank stares, understandably so. Thank you so much for sharing your journey, you have no idea how much it means to me and my family. My Jack loves your books too!

Beverly said...

So glad to hear from you and AMEN!!!! You inspire me so much and your words touch my heart. My situation is different. I have a 43 year mentally ill daughter. I don't have the constant to-do list you do but I can sympathize with you to a degree. Every time I come to read your blog, whether you have posted or not, I look for Jack's smile. His smile is my inspiration to keep trying. I love that smile. I see you and your husband in it. I see your hard, constant work in it. I see love in that smile. You both are amazing parents and what a lucky family you are to have each other. I'm thinking about you as I go about my day. I look forward to checking on you. God bless you all.

Amber said...

Not in your exact boat, but whenever a new evaluation or specialist is recommended I mentally try to figure out how I can add one more appointment without completely losing my sanity--even though I know it's what my toddlers need. And I do feel guilty for that being my first thought, but that's just how it is. In any case, thanks for sharing your story with the world. As a mother of micro-preemies who did "catch up" by age two, I appreciate seeing other examples and seeing how things work in other families.

Shannon said...

I get it, friend! Much love and SO GRATEFUL that you did start writing 7 years ago and I get to share.

Jessi said...

What a sweet and thoughtful comment! Thank you.

Jessi said...

Love our readers from across the pond!!

Jessi said...

So glad this resonated with you!

Jessi said...

Beverly - what a nice comment. I'm going to remember it whenever I see my boy smile. God bless you!

Jessi said...

Love that advice!!

Jessi said...

<3

Tamizh Selvan said...

Spending time with kids is the best thing ever that we can do. Thanks for reminding this with the content here.

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