Yesterday, I learned something about F. Perhaps I've always known, but just didn't put a lot of stock into the thought. My son is hopeless romantic I was informed by Mary, his new paraeducator.
"What?" I say.
Mary, "Yes, he is indeed. I realized that when we read The Hunger Games together during the Peeta and Katniss parts."
A hopeless romantic... who knew. So I ask F, "Is that why you wanted The Time Traveler's Wife?"
He replied "yes." (I thought he was just being kind and polite to his sister sharing her interests.)
Me, "So that means that you really do want to see and read that horrible Twilight series... not because you want to make fun of how big Edward's head is, but because your a hopeless romantic???"
He replied, "yes" vocally and with his head turn.
He finds my shock and awe reaction completely funny. My head is spinning... really? Twilight? I think I'll throw up. I am not a hopeless romantic. The thought of listening to that entire Twilight series book/or movie is a tortuous thought. Of course, I would do it for him, but he knows it comes at a price of me making fun of it the whole time. I'd do almost anything for this boy. The first novel was BORING and the only entertaining part about the movie was comparing Edward's giant head to everyone else's. I love a good tragedy with lots of suffering and agony, yet both of my children love a great love story.
This enlightening news brings me back our reality. My son will never marry or have children. He likes the pretty ladies. He's always had a way with them. Men and boys really have never had a lot to do with him with the exception of a few. F is a guy through and through. He loves sports and loves anyone to sit and talk sports with him. He loves a great action flick and just about anything with fighting and a weapon. But this hopeless romantic piece tells me his heart may yearn for companionship in a way that he may never receive. It saddens me so deeply. I realize if I could enlarge his world and the people that he meets, perhaps I may be wrong... I just don't want to get our hopes up. People can be so disappointing.
Thursday, April 12, 2012
Monday, April 9, 2012
Why didn't I think of that?
F wanted to go to the movies to see The Hunger Games. Going to the movies is challenging for him. It's very stimulating and it's hard for him to sit for long periods of time. He doesn't wiggle or reposition himself in his chair and with gas bloat, he gets uncomfortable. Seeing an entire movie is challenging to say the least, but he REALLY wanted to see this movie.
So he and Caroline planned a trip to the movies. They read the Hunger Games series together two years ago. F reread them just before the movie so he could do his comparison. They took a friend along too. He was SUPER excited about going today. So excited I'd thought he'd bust.
To make a long story short F didn't get to see the whole movie. He stayed as long as he could until he was so uncomfortable he was crying. He was so disappointed. So I took his tickets and drove to the theater.I spoke with the the theater manager. I explained the situation and that F hadn't been to the movies in over two years, because he was so disappointed from the last time he had to leave early. It's discouraging to be left hanging and not know how it ends only to have to wait for the video to come out. helped me come up with a plan for F. We can call ahead to find out the exact running time of the movie with previews. F can decide how much of the movie he'd like to see, leave before he gets too physically uncomfortable, get a reentry movie ticket so he can come see the second have on another day. It's genius!
I came home gave F his tickets. I explained to him how simple it would be for him to break a trip to the movies into two parts. He doesn't have to be discouraged for feel like he's missing out on something by leaving a movie early. He can always return to complete a movie on his terms. He was very happy to know that he can go back and finish The Hunger Games. He's also pleased to know that he doesn't have to have the goal of seeing an entire movie at the theater. He doesn't have to feel pressured to sit through the whole thing and he can actually go on HIS terms. I encouraged him and Caroline to start planning what they might like to see next month.
Seriously... why didn't I ever think of that?
So he and Caroline planned a trip to the movies. They read the Hunger Games series together two years ago. F reread them just before the movie so he could do his comparison. They took a friend along too. He was SUPER excited about going today. So excited I'd thought he'd bust.
To make a long story short F didn't get to see the whole movie. He stayed as long as he could until he was so uncomfortable he was crying. He was so disappointed. So I took his tickets and drove to the theater.I spoke with the the theater manager. I explained the situation and that F hadn't been to the movies in over two years, because he was so disappointed from the last time he had to leave early. It's discouraging to be left hanging and not know how it ends only to have to wait for the video to come out. helped me come up with a plan for F. We can call ahead to find out the exact running time of the movie with previews. F can decide how much of the movie he'd like to see, leave before he gets too physically uncomfortable, get a reentry movie ticket so he can come see the second have on another day. It's genius!
I came home gave F his tickets. I explained to him how simple it would be for him to break a trip to the movies into two parts. He doesn't have to be discouraged for feel like he's missing out on something by leaving a movie early. He can always return to complete a movie on his terms. He was very happy to know that he can go back and finish The Hunger Games. He's also pleased to know that he doesn't have to have the goal of seeing an entire movie at the theater. He doesn't have to feel pressured to sit through the whole thing and he can actually go on HIS terms. I encouraged him and Caroline to start planning what they might like to see next month.
Seriously... why didn't I ever think of that?
Sunday, April 8, 2012
Cienna's Prosthetic eye
While I was out running yesterday I began thinking about Cienna, specifically her prosthetic eye. I have many regrets when it comes to both Cienna and F, but many I've been able to work through. But this one regret still nags at me all these years later... the prosthetic eye.
Cienna had her right eye removed before she was a month old. She had to wait six to eight weeks before she could get a prosthesis. Where her eye should be just looked pink. She had this spacer in place. It's purpose to put pressure on the orbit to promote bone growth. The eye's growth is what causes the orbit to grow. Then when she was completely healed she was to get a prosthetic eye.
I think the specialist is called an ocularists. I should Google that to confirm, but I'd just like to finish this. There was a local one in our area. I think they worked primarily with adults. Cienna was referred to them. Coincidently, R's grandmother had a prosthetic eye. She raved about their work. However, when it came to Cienna they did a generic fit and the eye was always somewhat flat looking. It lacked the depth of other prosthetics.
Cienna would constantly rub her eye. It created mucous and it would get irritated. It teared a lot. She'd rub it and it would pop out. I remember clearly the little suction plunger used to put it back in. I can remember her saying "uh oh" when it either turned or popped out. Even after it was resized to help promote bone growth, it still wouldn't be quite right.
The year she became very ill. I finally asked her doctor to refer us to their ocularist. I wanted her to be molded and custom fitted. The ocularist came while she was under anesthesia and molded her socket. This helped him create a custom fit for the eye. I'll never forget going to the appointment to have her final fitting. The ocularist showed her the new eye. Cienna was taken with it's beauty. She remarked on it immediately. If memory serves me well... she called it her "new pretty eye." He removed the old eye and put in the new eye. The fit was amazing. Cienna could not believe how it felt. The old eye became "the yucky old eye." The new eye perfectly matched her real eye and you could not tell the difference, or at least other people couldn't.
How my heart broke that I didn't pursue that custom fit for her. She received this eye in October she would die the following February. I still have that "old yucky eye" put away with some of her belongings. To this day I still regret not doing this for her. She never had mucous again. She didn't rub it any longer. It didn't tear excessively. The mold made all the difference. The lessons we must learn in life are not always easy.
I'll have to find some old pictures of Cienna and post them... when I have the emotional strength. It's very taxing on me emotionally to take that trip down memory lane.
Cienna had her right eye removed before she was a month old. She had to wait six to eight weeks before she could get a prosthesis. Where her eye should be just looked pink. She had this spacer in place. It's purpose to put pressure on the orbit to promote bone growth. The eye's growth is what causes the orbit to grow. Then when she was completely healed she was to get a prosthetic eye.
I think the specialist is called an ocularists. I should Google that to confirm, but I'd just like to finish this. There was a local one in our area. I think they worked primarily with adults. Cienna was referred to them. Coincidently, R's grandmother had a prosthetic eye. She raved about their work. However, when it came to Cienna they did a generic fit and the eye was always somewhat flat looking. It lacked the depth of other prosthetics.
Cienna would constantly rub her eye. It created mucous and it would get irritated. It teared a lot. She'd rub it and it would pop out. I remember clearly the little suction plunger used to put it back in. I can remember her saying "uh oh" when it either turned or popped out. Even after it was resized to help promote bone growth, it still wouldn't be quite right.
The year she became very ill. I finally asked her doctor to refer us to their ocularist. I wanted her to be molded and custom fitted. The ocularist came while she was under anesthesia and molded her socket. This helped him create a custom fit for the eye. I'll never forget going to the appointment to have her final fitting. The ocularist showed her the new eye. Cienna was taken with it's beauty. She remarked on it immediately. If memory serves me well... she called it her "new pretty eye." He removed the old eye and put in the new eye. The fit was amazing. Cienna could not believe how it felt. The old eye became "the yucky old eye." The new eye perfectly matched her real eye and you could not tell the difference, or at least other people couldn't.
 |
| The old yucky eye, flat and lifeless. It's just as I remembered it to be. |
How my heart broke that I didn't pursue that custom fit for her. She received this eye in October she would die the following February. I still have that "old yucky eye" put away with some of her belongings. To this day I still regret not doing this for her. She never had mucous again. She didn't rub it any longer. It didn't tear excessively. The mold made all the difference. The lessons we must learn in life are not always easy.
I'll have to find some old pictures of Cienna and post them... when I have the emotional strength. It's very taxing on me emotionally to take that trip down memory lane.
Tuesday, April 3, 2012
19 is the Number of the Day ;)
I can't believe it! My boy is celebrating his 19th birthday today. Never in my wildest dreams did I ever think we may see this milestone. I know that sounds terrible, but the ugly reality is that many kids with the health problems that he has (primarily the asthma and restricted lung capacity) survive into adulthood. I feel so lucky!
I can't even imagine how F feels. I often wonder if he has ever thought about his own life span or mortality or if he has felt that he was close to dying. I just have never had the courage to ask him. I've asked him before if he's angry about his disabilities. He has replied yes on some occasions and no on others. I would imagine like me it's a mixed thing. He only knows this life. He cannot miss what he's never really had. I know there was a time when he was VERY angry at the district for not providing him valuable services. I know at times he gets frustrated because he can never catch up he's so behind and it's harder now as an adult to make progress. I think he's done a fabulous job of making the best of everything he's been dealt.
Today I am grateful to say that I am blessed to have F in my life for these years. Thankful, for all he has taught me. My life is so much richer because of all that he brings to it.
Happy birthday, F! I can't wait to celebrate your 20th next year. I hope your day will be as special as you are. I love you to the moon and back!
I can't even imagine how F feels. I often wonder if he has ever thought about his own life span or mortality or if he has felt that he was close to dying. I just have never had the courage to ask him. I've asked him before if he's angry about his disabilities. He has replied yes on some occasions and no on others. I would imagine like me it's a mixed thing. He only knows this life. He cannot miss what he's never really had. I know there was a time when he was VERY angry at the district for not providing him valuable services. I know at times he gets frustrated because he can never catch up he's so behind and it's harder now as an adult to make progress. I think he's done a fabulous job of making the best of everything he's been dealt.
Today I am grateful to say that I am blessed to have F in my life for these years. Thankful, for all he has taught me. My life is so much richer because of all that he brings to it.
Happy birthday, F! I can't wait to celebrate your 20th next year. I hope your day will be as special as you are. I love you to the moon and back!
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