Thursday, October 16, 2014

Back Breaking Benefits

This has been an October full of suck. It's usually my favorite month but between family and friends illness, personal injury and mourning a family loss... I'm kind of done.

Yesterday I went for a follow up for my own trip to the ER, because you know once in a week was clearly not enough. It's the first day I feel well enough to sit in a car since last Friday (and maybe a chair for any period of time). The residual effect of the pain meds the hospital prescribed have left me on bed rest with an upset stomach for almost a week.

I call, and gently remind the receptionist at my primary care provider's office of my condition, tell her it's to follow up because of my ER trip... I have to say that three times before it clicks with her. Then we go in.

Despite the fact that I'd been there the week before for a condition that had worsened, and to follow up the ER visit, we have to wait. We wait a long time. And Ondine is starting to act like any other toddler. And because it's a doctors office there other crying babies. But these don't bother me. They actually make me smile, almost longing for when she was little and things were so much easier. Then I snap back to reality and remember it was NOT easy.

The one dad takes his son outside for a moment to calm him down. When he comes back inside I can't help myself. I shout at him.

Me: Oh my God, does he have a bilateral cleft lip and pallet?

Bewildered (slightly embarrassed) father: Yes.

Me: He's beautiful.

Bewildered (slightly less embarrassed) father: Thank you.

Me: My daughter had the exact same condition.

She goes running by. A beautiful smile, no scar. He doesn't seem to believe me. We start to chat back and forth, my husband and I start sharing our story.

I show him where she started, which was much worse than where his son is for the pallet and lip. I show him more photos of her journey, the device she had to wear, the tape on her tiny cheeks. We talk about the doctors and the NAM molding that didn't work for his son but Ondine would be the poster child for. His sons name is Evan and he has a secondary condition I don't remember. He will have many more surgeries than Ondine because of it, but I would never know to look at his precious smile.

Evan's dad asks us if people ever stared, or gawked. Yes.

I tell him how it took some time to get over myself and not give a damn what anyone thought. I can tell that it takes the guilt and frustration off his shoulders to know someone else was judged the same way, to know that someone else felt they had to explain their situation because it is no ones fault that they were born with a cleft.

His wife comes out on crutches. She tore her ACL. She and I make a fine pair in our struggle to take care of our children with our injuries. 

She sits to feed Evan using a familiar pigeon bottle prescribed for such patients. We tell her some of the same stories we shared with her husband. We ALL complain how tired we were with the first bottle we had to use, grateful when they prescribed the new one. 

We have read some of the same blogs from Seattle Children's site, and heard some of the same stories. It's actually makes me forget about my back and my wait time for  my appointment because it's such an honor to talk to another family who's going through the same thing we did.

We keep talking. No one should cry because other moms, with their perfectly healthy babies, make them feel judged- but we both experienced it. I tell her I only pumped until 4 months but then broke down in tears that I wasn't a good mom because I couldn't feed my own baby. She almost cried, because she didn't make it even that long and thought she was the only one. 

I can see the relief on both of their faces to see our before and after photos. There is nothing that a doctor or expert can say that will be the same as seeing first hand the before and after. There is nothing that can replace the anxiety with the assurance that everything will be alright as witnessing someone else who has passed through the fire before you, with you can.

I am really grateful I injured my back. You see, we were supposed to be somewhere else Wednesday evening. But somewhere else didn't happen. My appointment took too long.  And because of that we were able to share Ondine's Journey with someone new. I can't begin to tell you how the light I saw on their faces, in their eyes, when I told them "I know how you feel" and they knew that I could actually say so. 

There is nothing that takes away the fear of taking a child to a hospital completely, but I'm grateful I suffered a little so that these strangers would know they were not alone and find hope.

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