Monday, October 24, 2011

Always leave 'em laughing....

I've written about my eldest daughter, Blake in previous posts. Smart, funny, gorgeous, athletic, happy, kind, well, you get the picture. But Blake does have a secret. An achilles heel if you will. One could even go so far as to call it a...flaw? perhaps.

Blake absolutely, positively cannot stand to be in a hospital.

When people hear that they are always surprised. I guess because they assume that since Tess has spent so much time in hospitals, that Blake would have put in her fair share of visiting hours. But in reality, Blake has only been one time to the hospital to visit Tessie. And no, not because she doesn't care. Of course she cares. She loves The Toots with all her heart but she has always been really busy with sports, drama and school and it isn't as though the hospital is ten minutes away. It is an ocean away. Literally. And often times, a couple of States away. So it just didn't happen.

Except for last winter. You may remember me writing about The Toots being hospitalized with Influenza B and pneumonia. She spent 6 days in Special Care, hooked up to oxygen nearly the whole time, seizing, and just generally scaring the ever loving crap out of me. I am not exaggerating when I say that was one of the first times I honestly thought we might lose her. It was that bad.

But The Toots is made of sterner stuff (thank God) and rallied. After a few days I thought she looked well enough to see her sisters and they really wanted to come see her. I figured a visit from them would cheer her up immeasurably and do her as much good as the meds being fed into her little body from the IV. And bonus, The Bean and Bob-bay were also coming to visit.

When the kids got there they had to put on masks and wash and Purell their hands before getting near The Toots. Then they filed in on either side of her bed. She was happy to see them but too sick to really show it. Ellie and Bean were laughing and giggling as only those two birds can when they're together while I noticed Blake sort of backing off just a bit. Hmmmm....

And then she started a small freak out. "Mama, Tess looks really bad! Is she going to be okay? She really doesn't look good!"

And there was really no time to answer her because Blake was rambling on and on chirping like a maniacal bird in a tree. "How can you stand it here?! How can you stand being trapped in here day after day?! I feel like I'm going to puke or something! I really don't like being in here!"

I sort of looked at her like she had suddenly sprouted three heads (partially because in her hysteria a bobby pin had come loose and was swinging crazily in front of her face and she didn't even notice) and calmly said, "What is the matter with you? Go sit and calm yourself." Poor Bobby didn't know what the hell ailed her and Ellie and Bean were cracking up at their sister's distress.

All in all the kids stayed maybe an hour before leaving. Blake nearly trampled them getting out of there. And I didn't think too much more of it other than to laugh about that bobby pin dangling.

Fast forward to this past Saturday. We went to go visit my nephew who is recovering from a serious accident. We took the kids to Boston to see him and decided to leave The Toots with nurse Sheila so there would be no medical drama while we were there. You will get the irony of this last sentence in a moment.

I knew Blake was nervous. And as the visit progressed at one point I noticed her hands shaking like a parkinsons patient. I took her aside and whispered, "Are you okay?". She assured me she was fine and so we continued to chat with Heather and Joe.

The next thing I heard was Blake saying, "Mom, I can't see."

I thought to myself, "For God's sake, what is she trying to look at that I could possibly be blocking?" I mean, I know I'm not small by any stretch of the imagination but to be blocking her whole field of vision? Come on!

Then she keeled over. Head first into a chair and then the floor.

Yep, out cold. I was so shocked I couldn't move. Ellie said something along the lines of, "Wellsa!" while the hubby sprang into action and gathered poor Blake up into his arms. The look on Heather's face was priceless.

We got Blake sort of situated. Head down, feet up, laying on the hospital floor right beside Joe's bed. It was about the time she started coming around that I began to snicker. Heather, who had been right next to me started to snicker as well. Then I was full blown, hysterically laughing, to the point of snorting, and so was Heather. The hubby did not seem to share our humor which only made us laugh harder.

Yeah, we're all heart. In fact, poor Blake had to actually ask me to "make myself useful" and get her some water. So I laughed even harder.

After about twenty minutes of laying down, then moving to a sitting position all the while apologizing to Joe saying things like, "I'm sorry Joe, it's not you. You look good. It's me. I hate hospitals" and at one point apologizing to him for "stealing his thunder", Blake managed to pull herself together enough to leave under her own steam (which was questionable at one point. She even asked if I was 100% opposed to her being wheeled out in a wheelchair) and I shoo'd them out ahead of me as Heather thanked Blake for the much needed laugh.

Then I turned to Heather and, you got it, we lost it some more. With a hug goodbye, I left. Both of us still in gales of completely inappropriate laughter.

When we got to the van Blake described the experience for us.

"I dreamt I was on a roller coaster because Joey's face kept whipping by and I had an up and down sensation. But now what I think happened is that the room was spinning and the up and down part was me falling over."

Well, yeah, that would make sense.

I laughingly agreed that that was probably what happened and luckily, Blake has an awesome sense of humor, even at her own expense and laughed right along with me and agreed I could blog about her little episode when I asked.

Then we got a text from Heather, "Is Blake feeling better?"

Me: "Yes. And She is happy to have made your day. Always leave 'em laughing she said."

Heather: "Well, I'm still laughing"

Mission Accomplished. Thanks Blake.

Monday, October 10, 2011

Just Imagine...

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.


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.