Sunday, October 21, 2007

It’s small world

One of the strangest thing that has happened over the last 18 months for us is the way that this blog (that was honestly started to save me the hassle of adding individual emails to a long list of updates) has become a tool for other families with short bowel kids.

We get emails at least once a week from parents who are making the tough choices that we made just after Ellie was born and have been told more than once that families have even gone so far as printing out the whole thing to read during their time in the NICU.

It is really overwhelming for Abby and I to think about this.

Abby has an encyclopedic knowledge of these kids and can tell you right now how much bowel so and so has and what surgery they have had. But even though we know these kids remotely it is very rare that we have gotten the chance to meet these folks that we have emailed or even talked to on the phone.

Today took a weird twist on this. Oddly, it brought in my Mom and a baby with short bowel from Maine.

Thursday I got an email from a grandmother of a baby with short bowel from central Maine. The family is making the tough choice about where they want their baby treated and wanted some advice from us about how we made the choice to come to Boston. As we do for everyone that asks for help, I offered the grandmother our home phone number and cell numbers to call to talk or call when things get scary, even at 2 AM. The grandmother returned her phone number in Maine and I promptly googled the number and found out that it is the same town where my mom grew up in central Maine.

Since this was a grandmother, I thought that she might benefit from my Mom’s view on things and sent her my parent’s phone number. Parent to parent is one thing but my mom can tell it from Gramma’s point of view as she sees it without any filters.

Tonight I got a call from my mom.

It turns out that the two grandmothers are exactly the same age and would have graduated from high school together if one had stayed in town longer and the other had come earlier. In the course of my mom doling out advice and opinion about Ellie’s story, it turns out they knew the same people in town and spent an hour and half having a phone reunion that was all started with two short bowel babies.


What is even stranger is that in the course of printing and reading Ellie’s blog, the other grandmother saw the picture of my grandmother holding Ellie last spring: And she recognized her recognized her. 55 some odd years after my grandmother moved away from Maine.

I think that they may be another family that we meet in person, either if they come to Boston or at the children’s hospital in Maine where my mom has offered to go and rock the baby in the NICU if the parents can’t be there.

It still makes me queasy to think about those first few days. If sharing our girl makes it even a little bit easier to get through those crappy days then I am glad that we have her up there to show folks that short bowel is a lot better than you might imagine. In fact, tubes and all, it is quite a lot of fun.


Jana Weaver said...

Thanks for the update the auntie of that baby in Maine who is currently residing in Germany (and is also the mother of a 26.5-weeker with pictures very similar to those first photos you have of Ellie) I appreciate getting an update - even if it isn't from my own family! :-)

Susi said...

Good morning Boston Brogans! I actually wrote a rather rambling letter of thanks for that e-mail with the info just before midnight Saturday, but figured I had better re-read in the morning. Apparently didn't hit the draft key so it was all lost.
And then the one where you asked if we lived on a certain lake in Maine -- that one took me by surprise! We do not know our kid's decision yet. They spent almost two hours talking with their pediatrician for young Madison - only telling us that it was productive.
--- As for the previous comment from my daughter, how can I tell her everything if she is sleeping. All the action here comes after late afternoon into evening, when it is 6 hours earlier in Germany. She waits until she sees that I am online and they makes her daily call when I go off. Dial Up is difficult to say the least. Great fun talking to your grandmother Ellie.
Will be certain to meet her in person soon. You certainly are SuperGirl, Ellie, and keep on keeping on. Hope to meet you as well as your nana.

trsmess3 said...

I to have a daughter who is short gut she is now 3 and doing well. I would love to chart with anyone who has or is dealing with this them selves