« Billing Errors. | Main | It's All Rainbows and Unicorns. »

Guest Post: Pilgrimage.

There are some great new diabetes bloggers out there, one of them being Without Envy, a blog written by the father of a little girl with type 1 diabetes.  Steve has offered to write a guest post for SUM today, and I'm happy to share his words with you.

*   *   *

Pilgrimage

Steve from Without EnvyShortly after our eight year old daughter Lia had been moved to the Pediatric Intensive Care Unit late in the evening of December 23, the same day of her diagnosis for type 1 diabetes, the nurse working nightshift came in to check her vitals and IVs and she asked how my wife and I were doing. We told her that it was a bit much to absorb in one afternoon and because she was a nurse working in a children’s intensive care unit she said that she knew what we were going through and offered a meaningful smile. Then she said softly that we’d be just fine. She had a cousin whose son had developed diabetes some indiscriminate time ago at a similarly young age and since then the boy had taken charge of it and was managing very well. Neither of us knew what it meant to take charge of one’s diabetes but we were both tired and mentally worn out from the trials of just getting through that momentous day so we took what little solace we could from her comment and filed it away under kind, but impractical, healthcare reference.

Besides, we were hurt and dismayed and unsettled. We had no idea how this had even happened and had no interest in hearing testimonials about someone who was weeks, months, years down the road in treating their diabetes. Such well-wishing stories of mastery would become important, but not then, not with our daughter lying two feet away connected to tubes and a heart monitor. Nor were we inclined to receive them and similarly good intentions the next morning when the doctor on duty walked in wearing a holiday cartoon tie and a cheerful grin and wished us a Merry Christmas. I looked at him and hated at once his wit, his casualness and the apparent ease with which he was about to address us. Did he not see what I saw? Did he not know what I knew?

I got over him of course, just as I overcame the shock of her diagnosis and the pain and heartbreak of sticking her with needles, and the fear of letting her out of my sight. There was not much future in holding on to these things, for any of us. So we came home and with the instruction we’d received from the diabetes educators the truth behind what the night nurse had spoken of started to make itself clear. We counted carbs and recounted them. We performed the elementary calculations to determine the necessary insulin dosage then we, holders of two bachelor degrees and one masters  between us, had someone else verify it. We administered the shot through the tears and the anguish and watched as our pivotal day from the one prior struggled to become routine.

And in the days that followed it did and we listened to it and we learned and here we are now, ourselves weeks down the road. The tried and tested. Lay experts. Sharing our own testimonies, like pilgrims set out from their home, rucksacks stuffed with provisions, looking for others to witness and share in their stories and them in ours, hoping to uncover proof that you can take charge of this beast and manage well.

It’s not clear to me yet that you can. Perhaps manage and taking charge are too strong of words, an honest mistake made by someone connected only to the peripheral edges of diabetes. Reality most likely rests somewhere in the middle, a habitable settlement between freedom and tyranny. Wherever it lies, I can honestly say of the company we keep, none has been more supportive or understanding or willing to listen than that which we’ve found right here at our own fingertips. For your patience and your courage and care, we are exceptionally grateful.

Diabetes has changed us, no doubt, and when I hear others talk of their lives in terms of before this disease and after, I worry some because our lives before were good. Not good in terms of its flamboyance or abundance, we had none of that. But good in the sense that we ate right, we exercised, we lived life in moderation, and still...

It was a way of life that had we the choice we would not have aggravated, but like any pilgrimage, in words similar to that of my gracious host, it’s not the beginning or end that defines you, it’s the journey.        

See you on the road,

Steve   

*   *   *

Thanks again, Steve!  And if you would like to contribute a guest post (especially around, oh, let's say the end of April, beginning of May ...), please email me at kerri (at) sixuntilme (dot) com.  

Comments

Thanks for getting Steve's voice out there, Kerri. A very heartfelt and worthy read. Steve: I'll look forward to reading and sharing space with you in the Diabetes Online Community. Living with Diabetes (personally or not) is a long journey with many obstacles, but it's a path that I hope all of us can help your Lia and family along. Maybe taking some comfort in knowing that her life's journey can be even more spectacular because of what must be endured, and it can be just as productive, succesful, and fulfilling as anyone's. Thanks for sharing your experiences so far.

Steve and Kerri,

Thank you for a heartfelt and wonderful post. It was a blessing to read it. We started this journey ourselves in January 2009 with our 6 year old daughter. I feel those feelings you described in the post, vulnerable, lost at times, resenting just a teeny bit those people who are not in this world.

Then, like you, I see that this journey has its own blessings, its own rewards, its own beauty some might say. There is this gracious and open-armed DOC which has welcomed us, given us so much hope, confidence and well, endurance, that we can do it. Thank you Steve for joining me on the road, I look forward to traveling it with you as a parent with a child with Type 1.

Thanks, Kerri, and thank you, Steve, for sharing this and allowing us in to view this part of your lives. I am the Father of a type 1, diagnosed at 11 months and now a healthy 10 year old boy.

Oh this brings me back to all the comments that people made that really did nothing for us at the time of diagnosis. Perspective is everything. As time has passed and we have adjusted, I do take great comfort in hearing the success stories of PWD, including of course Lia's and Kerri's. Thanks for sharing!

Lovely post. Thanks Steve. I too can relate only too well. Someone once told me that it gets easier but it never gets easy. I've been traveling this road with my daughter for nearly two years. So far those words remain true. All the best to you, Lia and your family and thanks to Kerri for hosting.

What a wonderful post. Thanks for sharing.

Steve, thank you for this post from the heart. I especially appreciated hearing what you did not want people to say to you, what you did not find comforting. So often we want to say the right thing and think we should know based on our personal connection with T1D.

Would you be able to share what may have felt more comforting so we will know better how to respond when the newness of the diagnosis is still so raw? Would it be more helpful to have people just listen to what you're experiencing/feeling?

Again, I thank you for your post. As a parent of child with diabetes, I'd like you to know I'm here for you when/if you want to reach out.

Wow. Just...wow. You put our experience into words. Thank you.

i got a chill reading your story Steve. our daughter just turned 8. she was diagnosed between Christmas and New Years when she was still a baby. strange similarity...
the journey certainly is what it's all about.

Excellent post, one I can relate to oh so well - thank you.

Thanks for the great blog. My 10 year old daughter was in a similar place last year. We are still adjusting to what I call our "new normal".

I know that we are not alone in this fight but reading what others are going though helps me cope with all the problems that come along. Thanks Again.

This was one excellent post Steve. I think that the words and phrases you used for the overwhelming diagnosis.

Thank you for sharing your story, and thank you, Kerri, for introducing Steve and his family to us.

Post a comment

(All comments are moderated. Thanks for your patience!)