I really do not spend a whole lot of time thinking about how my life is now. How it has changed so drastically over the past nine years. But when I do stop to think about it...
Nine years ago, I could never have dreamt that you could live, every single day, in physical pain and still laugh. In fact, I could never have dreamt that it would be ME living with that pain. I was strong, healthy and in really good shape. I had never even broken a bone. Then, WHAM, one day out of the blue, three and a half months pregnant with The Toots, muscle spasms in my back ripped though me like a tornado. The pain was indescribable. Seriously. And every day since then I have been in pain. Untold numbers of doctors appointments later, bone scans, MRI's and XRays and we still don't know why my muscles are so super sensitive. The word Fibromyalgia has been bantered about by a few doctors but I don't care what they call it, I just want them to fix it. Back pain and a disabled child do not mix.
Nine years ago, I could never have dreamt that I would have a child who is disabled. And medically fragile to boot. Nine years ago the worst thing I could think of with regards to my child's health was when Ellie had severe asthma attacks. Now they were scary. I mean, what could be worse that watching your child not be able to breathe? I would soon find out. And the bigger irony here? I purposely waited SEVEN years between Ellie and Tess because Ellie's health had scared me so bad that I thought I couldn't handle it if this baby had asthma too.
Okay Joanna, we'll see your scary child and raise you one VERY scary child. Thanks for playing.
Nine years ago I could never have imagined living my life in a constant state of fight or flight. Having to carry around a bag filled with diapers, wet wipes, drool cloths, oxygen, emergency seizure medications, thermometers, and syringes just to go out for ten minutes. Not to mention, suction machines, chest therapy vests, feeding pump and wheelchair. I could never have imagined that a normal item I would carry in MY purse would be extra syringes just in case.
WHEELCHAIRS, FEEDING PUMPS, SYRINGES...Oh my!
Nine years ago I could never have imagined having a normal conversation about something with the hubby all the while helping my child during a seizure. I could never have imagined having a child with seizures at all let alone, very, very scary seizures, and being on constant alert for them and still consider it just another morning when she has one.
Nine years ago I could never have imagined spending enough time in the hospital, with my child, so much so that everyone knows her and my, names. Even in a big hospital like Childrens Hospital in Boston. 9 North and 9 & 11 Fegan...many people in those three places know our names and or faces on sight. What are they? They are the epilepsy & neurology floors in Fegan and the neurology inpatient floor at North. Yep, we are superstars for sure! At PenBay, when the nurses hear Tessie is there, even if she is not their patient, they will come in to say hi to her. "I heard Tessie is here!" they will sing out as if we are there for a nice little visit. And I love it. I love it because the more invested they are in my child, the better in my opinion.
And let's face it, you can't not fall in love with Tessie. She just has that way about her. People are drawn to her everywhere we go.
Nine years ago I could never have imagined standing at the check in desk at a hotel, with Tess next to me in her wheelchair, watching in fear as a very large man, all dressed in leather, big beard, lots of tattoos, begin to walk towards Tess and, as I am starting to grip her chair a little tighter, kneel down so he is eye to eye with her, and in a voice so gentle it sounded like it couldn't possibly have come from such a man, say "Hello sweetheart. You sure are beautiful." And then gently rub her cheek with his massive paw-like hand as Tessie breaks out in a huge smile, and then look at me to tell me how gorgeous she is and how he is a motorcycle rider and often rides in benefits for kids like Tess.
Nine years ago I could never have imagined how a moment like that would stay with me forever and still make me feel good today whenever I think of it.
Nine years ago I could never have imagined going to Special Olympic games with one of my children competing and actually having a great time. And cheering for all the athletes and being so proud of them even though I didn't even know them as they put their heart and soul out there for everyone to watch. I could never have imagined that I would actually look forward to these events, but I am already wondering when the next one is (and of course plotting to figure out how The Toots can win, I mean let's face it, I'm still me).
Nine years ago there were many, many things I could never have imagined.
I could never have imagined the road that I was about to go down and at the same time, I KNOW I am supposed to be on this road and that it is a GOOD one although filled with sadness and fear at times.
This has always been one of my favorite poems. Even as a kid I loved it. Now I know why...
The Road Not Taken by Robert Frost
TWO roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.