I am sitting here in my comfy computer chair in Gary's apartment enormously thrilled to be here in one piece and not have defiled any garbage cans nor myself on the way here. Super plus! I am going to rest today while Gary and Ryan 1) Go grocery shopping since there is no food in the apartment and 2) go bike riding on the river walk since both of them got grundles of sleep on the plane and I got nada.
While on the plane(s) I had a blog solidify for no apparent reason whatsoever:
Plane Blog:
Being the mother of a handicapped child has its ups and downs. Well, not really – it is, it seems to me, just really, really scary. Never knowing what is around the next corner (having never had a handicapped child before): what will the next hurdle be, the fear of the unknown and will I have the strength to make it through. And the ever present not quite attainable: ‘Good Mom’ status in my eyes - there is always something I am shirking, not doing right, being impatient about, and it is never more obvious than with a handicapped child just how crappy a mother you really are. But every new accomplishment – the joy is that much sweeter, never taken for granted – so maybe it cancels the other stuff out. Who knows – it just seems like a big, dark, thick, cloud of scary unknowns most days ….
Sunday:
We take off from Houston. I am sitting alone (sort of, Ryan is across the aisle, but pretty much in his own world of iPod) – an aisle seat, but I can see out the window if I lean forward. Right as we take off, we bank very sharply to the right – the side of the plane I am on and I can see an ocean of lights. It is beautiful – my Christmas lights, I decide. We are in such a position that they are reflecting off the top of the wing that I can see out the window also. Not putting much thought into how this could be happening and us actually staying in the air and not just spiraling down into a flaming ball of airplane mush, I marveled at the beauty and just enjoyed it until we leveled off. My little treat for the night.
I put on my noise cancelling headphones and attached it to my iPod. It was already playing: ABBA – I was listening to them before they were cool (was listening to them ever cool? Didn’t think so. I’m not real main stream if you have not figured that out …). And suddenly the most BIZARRE memory came crashing into my mind and was incredibly disturbing. As I sat on that plane and cried while ABBA sang in my ears, I thought of blogging about it, but remember writing about it – thus I had to have blogged about it, right? Then I realized that it was over two years ago and my blog is not that old. I had written updates daily to Gary and my friends and I believe that is what I am thinking of.
A little background. For my parents 50th wedding anniversary, they decided to take all 6 of their children, spouses and grandkids on a Disney Cruise. Sounds good, you say? But, oh, how I can make things complicated. It happened to be during school for Ryan and we had NEVER taken him out for vacation – he was not getting the grades to be able to skip a week. And then I found out – and was struck speechless and a little more than annoyed – that the Disney Cruise did not welcome nor invite nor encourage – rather said ‘no’ - to having an 18 year old handicapped person on the cruise. You heard me – Disney – said my Jessie was not welcome. Thus – Gary stayed home with the kids and I went – the evil daughter all alone while every single other member of my parents extended family showed up.
I bunked in a room with Marci and Patti (my sister and her partner) and that was fun and helped with the guilt I was feeling. Fast forward a few days – I had a lot of firsts on that cruise – first real cruise, first time to get my hair colored (and cut in years actually) and was all primped up and looking pretty for the program that night.
The program was about a girl in her bedroom where magical things happened. When Ariel (I think) appeared and they started to sing Jessie’s favorite song – I started to cry. I was APPALLED with myself, but she would have LOVED this! Damn them and their rules. Suddenly it was so much more. I was actually totally and completely heartbroken – and started to sob. I jumped up from my seat and in Cinderella fashion ran up the steps to the doors and to the doormen (sans the missing glass slipper). Sobbing I remember I said something like “Shame on you – you are all shits” – AS IF they had a clue what this hysterical woman was talking about and busted through the doors at a run.
Minnie was outside having photos taken with Mickey and children and she recognized me – she had come into the salon while I was there to get her plastic head ‘primped’. It was cute and we had a fun afternoon – but as she approached me I screamed at her something like: ‘Back off, Bitch” – seriously out of control. I could see things happening, it seemed like it was not me, but someone I was watching - totally deconstruct. The only thought in my head as I ran down to my room was ‘where do you think security is, they SO should have tackled me by now’. Wrote a quick note to Marci and Patti apologizing for being an ass, grabbed my computer bag (they had wi-fi) and escaped the room for the entire night.
I was horrified at what I had done – at my visceral reaction (which there must have been something to it as I sit here typing on my flight to Australia crying – people looking over sheepishly – Do I Give A Shit? No.). What was it about that night, that program, that song that seriously sent me over the edge in a way I have never experienced before or since? And I think it was just the love I have for my daughter and KNOWING she would have LOVED it, it would have been enchanting to her to watch and I could not give it to her.
After fleeing my bedroom, I found a very dark spot out on a deck, carried a deck chair over and was fascinated and calmed into peace by the most beautiful lightning storm that raged throughout the entire night. It was beautiful, it spanned the entire 180 degrees that I could see from my side of the ship.
At one point, sitting alone in the dark, I watched a man approach, climb onto the rail and look EXACTLY like he was going to jump into the frothy, cold inky black water below us. I held my breath not wanting to frighten him – and then too embarrassed to let him know I saw the whole thing. He didn’t jump. I don’t really know what he was doing. Just one more thing to add to my 'night of bizarre'. Seriously - how does someone get so incensed that they abuse Disney Characters?
Why ABBA brought that memory to me as we were flying out of Houston I don’t know. But thinking back I think that was my very biggest heartbreak FOR Jessie – not BECAUSE of Jessie. Big difference. I knew she would so love the cruise we were on – it would have been magical to her and here she was not invited and I saw the unfairness of it all. I so wanted to share what I was seeing with her, and I was being told that she was not welcome. I have never been more frustrated.
I have had a lot of heartbreaks because of Jessie – and this is not the time, place or forum to discuss them all, but for some reason – I decided to share my Crazy Cinderella moment escaping the staring eyes of people wondering why this woman was so heartbroken in the middle of a beautiful program.
This was by no means the hardest thing I have done because of Jessie, or most annoying thing that has happened to us – THAT prize probably goes to the adults that were making fun of the ‘retard’ in front of me, Jessie and their own kids at a McDonalds playland in Phoenix. If I hadn’t been so mortified, protective, incensed, etc I would have felt sorry for the kids – what chance of any sort of empathy were they going to have with parents that would do something as cruel as make fun of a beautiful mentally retarded 8 year old? But I digress – not the time or the place and why this memory is hitting my blog is beyond me.
But since I typed this up, I decided to share ...
Lucky You ...
While on the plane(s) I had a blog solidify for no apparent reason whatsoever:
Plane Blog:
Being the mother of a handicapped child has its ups and downs. Well, not really – it is, it seems to me, just really, really scary. Never knowing what is around the next corner (having never had a handicapped child before): what will the next hurdle be, the fear of the unknown and will I have the strength to make it through. And the ever present not quite attainable: ‘Good Mom’ status in my eyes - there is always something I am shirking, not doing right, being impatient about, and it is never more obvious than with a handicapped child just how crappy a mother you really are. But every new accomplishment – the joy is that much sweeter, never taken for granted – so maybe it cancels the other stuff out. Who knows – it just seems like a big, dark, thick, cloud of scary unknowns most days ….
Sunday:
We take off from Houston. I am sitting alone (sort of, Ryan is across the aisle, but pretty much in his own world of iPod) – an aisle seat, but I can see out the window if I lean forward. Right as we take off, we bank very sharply to the right – the side of the plane I am on and I can see an ocean of lights. It is beautiful – my Christmas lights, I decide. We are in such a position that they are reflecting off the top of the wing that I can see out the window also. Not putting much thought into how this could be happening and us actually staying in the air and not just spiraling down into a flaming ball of airplane mush, I marveled at the beauty and just enjoyed it until we leveled off. My little treat for the night.
I put on my noise cancelling headphones and attached it to my iPod. It was already playing: ABBA – I was listening to them before they were cool (was listening to them ever cool? Didn’t think so. I’m not real main stream if you have not figured that out …). And suddenly the most BIZARRE memory came crashing into my mind and was incredibly disturbing. As I sat on that plane and cried while ABBA sang in my ears, I thought of blogging about it, but remember writing about it – thus I had to have blogged about it, right? Then I realized that it was over two years ago and my blog is not that old. I had written updates daily to Gary and my friends and I believe that is what I am thinking of.
A little background. For my parents 50th wedding anniversary, they decided to take all 6 of their children, spouses and grandkids on a Disney Cruise. Sounds good, you say? But, oh, how I can make things complicated. It happened to be during school for Ryan and we had NEVER taken him out for vacation – he was not getting the grades to be able to skip a week. And then I found out – and was struck speechless and a little more than annoyed – that the Disney Cruise did not welcome nor invite nor encourage – rather said ‘no’ - to having an 18 year old handicapped person on the cruise. You heard me – Disney – said my Jessie was not welcome. Thus – Gary stayed home with the kids and I went – the evil daughter all alone while every single other member of my parents extended family showed up.
I bunked in a room with Marci and Patti (my sister and her partner) and that was fun and helped with the guilt I was feeling. Fast forward a few days – I had a lot of firsts on that cruise – first real cruise, first time to get my hair colored (and cut in years actually) and was all primped up and looking pretty for the program that night.
The program was about a girl in her bedroom where magical things happened. When Ariel (I think) appeared and they started to sing Jessie’s favorite song – I started to cry. I was APPALLED with myself, but she would have LOVED this! Damn them and their rules. Suddenly it was so much more. I was actually totally and completely heartbroken – and started to sob. I jumped up from my seat and in Cinderella fashion ran up the steps to the doors and to the doormen (sans the missing glass slipper). Sobbing I remember I said something like “Shame on you – you are all shits” – AS IF they had a clue what this hysterical woman was talking about and busted through the doors at a run.
Minnie was outside having photos taken with Mickey and children and she recognized me – she had come into the salon while I was there to get her plastic head ‘primped’. It was cute and we had a fun afternoon – but as she approached me I screamed at her something like: ‘Back off, Bitch” – seriously out of control. I could see things happening, it seemed like it was not me, but someone I was watching - totally deconstruct. The only thought in my head as I ran down to my room was ‘where do you think security is, they SO should have tackled me by now’. Wrote a quick note to Marci and Patti apologizing for being an ass, grabbed my computer bag (they had wi-fi) and escaped the room for the entire night.
I was horrified at what I had done – at my visceral reaction (which there must have been something to it as I sit here typing on my flight to Australia crying – people looking over sheepishly – Do I Give A Shit? No.). What was it about that night, that program, that song that seriously sent me over the edge in a way I have never experienced before or since? And I think it was just the love I have for my daughter and KNOWING she would have LOVED it, it would have been enchanting to her to watch and I could not give it to her.
After fleeing my bedroom, I found a very dark spot out on a deck, carried a deck chair over and was fascinated and calmed into peace by the most beautiful lightning storm that raged throughout the entire night. It was beautiful, it spanned the entire 180 degrees that I could see from my side of the ship.
At one point, sitting alone in the dark, I watched a man approach, climb onto the rail and look EXACTLY like he was going to jump into the frothy, cold inky black water below us. I held my breath not wanting to frighten him – and then too embarrassed to let him know I saw the whole thing. He didn’t jump. I don’t really know what he was doing. Just one more thing to add to my 'night of bizarre'. Seriously - how does someone get so incensed that they abuse Disney Characters?
Why ABBA brought that memory to me as we were flying out of Houston I don’t know. But thinking back I think that was my very biggest heartbreak FOR Jessie – not BECAUSE of Jessie. Big difference. I knew she would so love the cruise we were on – it would have been magical to her and here she was not invited and I saw the unfairness of it all. I so wanted to share what I was seeing with her, and I was being told that she was not welcome. I have never been more frustrated.
I have had a lot of heartbreaks because of Jessie – and this is not the time, place or forum to discuss them all, but for some reason – I decided to share my Crazy Cinderella moment escaping the staring eyes of people wondering why this woman was so heartbroken in the middle of a beautiful program.
This was by no means the hardest thing I have done because of Jessie, or most annoying thing that has happened to us – THAT prize probably goes to the adults that were making fun of the ‘retard’ in front of me, Jessie and their own kids at a McDonalds playland in Phoenix. If I hadn’t been so mortified, protective, incensed, etc I would have felt sorry for the kids – what chance of any sort of empathy were they going to have with parents that would do something as cruel as make fun of a beautiful mentally retarded 8 year old? But I digress – not the time or the place and why this memory is hitting my blog is beyond me.
But since I typed this up, I decided to share ...
Lucky You ...
3 comments:
Dammit Lori! you bring me to tears, I wish you wouldn't do that :`( I feel so bad for you and what you and your family has been through, I look at my life and see that I have nothing to complain about. I do see a strong woman who loves her family dearly
And I thank you for sharing.
Take care young lady.
My heart breaks for you all the time. So not fair that the show's biggest fan was not allowed to attend. Makes me want to cancel my disney cable and boycut disney movies and such. Dya think my few bucks would make a difference? I guess in their support, it would be so hard to be a character and be hugged and followed by an adult looking childlike Jessie. But they should know that you always have an eye out for your daughter, and seriously never let her bother others (even when they don't mind being "bothered")
They ARE all shits!! I have a zero tolerance stance on mother-effers who close the doors on people b/c it makes it a little more inconvenient for themselves. Read - their bottom line. I'm not a Disney-fan gal, but this is a low I didn't know about. I am impressed you acted as well as you did - I'm pretty sure I would have commandeered an intercom or loudspeaker and cussed out the entire deck.
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