Monday, December 14, 2009

Funny how the internet works...

Over the years of enjoying the interweb, I've "met" many women who I would label as friends. The ""s in that sentence mean that I haven't really met met them, but merely intermet them. We talk online, worry about one another, celebrate (internetishly) eachother's victories, and maybe even talk on the phone. I sound like a dork, I know. But really, these relationships impact my life in ways I would have never thought possible. One of my dearest friends is someone I met online, and we talk on the phone nearly every day now. I truly have made some incredible friends from all across the interwebacommunication world.

Having a kid with "issues" just opens that internet world up even larger, as we search for others who are going through life at a similar pace and experiencing the same daily struggles as we do each and every day. Thankfully, we have been able to meet some of these other families who have a permanent job caring for a child with mito. And by meet, I mean really not in parentheses world, but in real life. Or IRL, for the tech savvy.

Meet...the Elliott family (well, part of them coupled with 2 of my rugrats):
The Elliotts are from a bit more northward and were heading down into the land where we still can wear shorts in December, and they so graciously stopped by for a few hours so our two "hose-noses could meet", in the words of Courey (the mom), which totally made me laugh hysterically. Linden has mitochondrial disease. He is a little over a year older than Nate, and barring a few details, their lives are almost carbon copies of each other to an extent. While the kids ran from room to room, tangling up eachother's oxygen tubes and having a grand ole' time, we sat around and talked biopsies, lab work, type 1 fiber predominance, GI dysmotility, liver stuff, MOM enemas, ports, cooling vests, and whatever else came to our minds. I don't think we finished a conversation, but we sure did start a lot. It was just so fun to talk to someone who "gets it" totally.
At one point, Linden came waltzing through the living room, and Courey said "Hey, put your bag of bile back in your backpack", to which we both looked at each other and cracked up while muttering "Is this really our life?" and throwing oxygen tubing over our heads while the kids circled the couch. A few minutes later, she said "No, we do not throw potatoes in the house." Now, that's a lot more normal, right? But really, it's all normal. Somehow, somewhere along the road, everything becomes so very normal...even the bile and O2 and ports and meds and watchful eye for temperature problems just becomes normal. And it is so good to see another family whose normal is the same to an extent.
Aniya and Emma hit it off really well. They played and did dress up and played some more. It is great how they can adjust to every situation as well and just flow with it.
Nathan walked up to Linden one time and started studying him, and then he pointed to his own cannula attached to his nose. He's never seen another kid with one. It was neat getting these two together...they share a special bond, whether they know it now or not. A mito bond...not many are like them, so I am glad they have each other. Thanks for making the effort to come over Isaac, Courey, Aniya and Linden...we truly did have a wonderful time with you all!


Jenny Hobbs said...

How fun! You keep getting to meet more families! When are our pics? hint, hint

Kim and Asa on December 14, 2009 at 11:00 PM said...

Aren't they the greatest!!! That Courey is super smart I tell ya!!!

I feel the same way about my internet buddies! I talk about ya'll like we are BFFs and then feel a little odd as everyone looks at me talking about my imaginary friends! :) Where would we be without this great internet to connect us?! I'm so thankful for each of you, my friends!

Ali on December 15, 2009 at 8:56 AM said...

I had to chuckle reading this. Alex and I spent the night with Missy, Ben, Samuel and Lauren recently. As Missy and I stood in the litchen chatting while we both pulled up syringe after syringe of medicine, we looked at each other and cracked up. It is so normal to us!
Glad you had a good visit. Can't wait to "meet" you in February.

Ti Kay Nou said...

Amber, your post is better than morning java! Thank you, Linden's "Grommit".

Anonymous said...

What a great post.It gave me a chuckle as well as a tear.I am so glad your two families finally were able to meet.What a huge blessing to have another family with the same normal. Linden and Aniyah's MooMoo

Toni on December 15, 2009 at 1:04 PM said...

What a fun play date for both boys (and girls) I totally get what you mean about online friends. They have totally shaped who I am as a mother and couldn't imagine them not in my life.

Jill on December 15, 2009 at 4:54 PM said...

Oh yeah! I get, at least to a certain extent, how great a gift those friends are for your family. Kind of like Culture Camp for my kids!

God is good!

Courey on December 19, 2009 at 9:02 PM said...

we had a blast! I swear we have tons of interesting weeds that are burning to be studied here in TN! We have the cutest hose noses ever!

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