Julia started walking...
and we will always remember...
because it was a really big deal, and we were so very proud!
Wednesday, May 11, 2011
Tuesday, May 3, 2011
Welcome To Holland
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Wednesday, April 27, 2011
The Follow-Up
The appointment was short and sweet. We were in and out of Scottish Rite in an hour yesterday, which must be some kind of record. The patient, however, was anything but sweet.
Julia made yesterday's hour long visit to Scottish Rite seem like one of our longest. She was terrible, really terrible!
In her defense I think this was her ninth medical appointment in about a month. She has had a MRI,allergy skin testing, blood work twice, a renal ultra sound, booster shots... not to mention visits to five of her doctors for check-ups in the last several weeks. Apparently, she decided that going to the doctor yesterday wasn't really on her to-do list so she wasn't going to make it easy on anybody.
She is always so charming and so brave at her appointments. I didn't know what to do with her yesterday. She was flopping around on the floor, refusing to answer questions nor allowing anyone to touch her.
I had to hold her down so the nurse could take her blood pressure while she yelped "you are hurting me!" Then, the only thing she said to her Urologist, who couldn't be nicer and more friendly, was "I don't like you."
The good news is that her renal ultrasound showed that Julia's kidneys and bladder are healthy and growing as they should be. Big sigh of relief. Dr. Gargollo wants us to try taking her off of her daily antibiotic and see if she can be infection free without it. He is worried she will develop an antibiotic resistant bug if she stays on daily antibiotics. That is very scary to think about, but so is the thought of her getting a kidney infection. When she gets a UTI, she gets so very sick. Today is her first day off of antibiotics so fingers crossed and lots of prayers that she will be okay.
After we saw Dr. Gargollo, I had the pleasure of taking the little monster to orthotics to be casted for a new brace for her left foot. The physical therapist and orthotist who saw her in clinic last week felt like some adjustments to her AFO might keep her from falling down so much. Maybe it will help her dance moves as well!
I was pleased that she didn't tell her orthotist that she didn't like him. She did, however, cry about how painful being casted was the entire time. "It hurts mommy; he's hurting me." She has been casted a bunch of times. Nothing about being casted is painful, at all! It wouldn't hurt even if she could feel her feet. She could have won an Oscar for the drama she displayed yesterday afternoon.
I have never been so glad to get out of Scottish Rite Hospital. I have to take her back on May 6th to get her new brace. Hopefully, she will have a better attitude by then.
Julia made yesterday's hour long visit to Scottish Rite seem like one of our longest. She was terrible, really terrible!
In her defense I think this was her ninth medical appointment in about a month. She has had a MRI,allergy skin testing, blood work twice, a renal ultra sound, booster shots... not to mention visits to five of her doctors for check-ups in the last several weeks. Apparently, she decided that going to the doctor yesterday wasn't really on her to-do list so she wasn't going to make it easy on anybody.
She is always so charming and so brave at her appointments. I didn't know what to do with her yesterday. She was flopping around on the floor, refusing to answer questions nor allowing anyone to touch her.
I had to hold her down so the nurse could take her blood pressure while she yelped "you are hurting me!" Then, the only thing she said to her Urologist, who couldn't be nicer and more friendly, was "I don't like you."
The good news is that her renal ultrasound showed that Julia's kidneys and bladder are healthy and growing as they should be. Big sigh of relief. Dr. Gargollo wants us to try taking her off of her daily antibiotic and see if she can be infection free without it. He is worried she will develop an antibiotic resistant bug if she stays on daily antibiotics. That is very scary to think about, but so is the thought of her getting a kidney infection. When she gets a UTI, she gets so very sick. Today is her first day off of antibiotics so fingers crossed and lots of prayers that she will be okay.
After we saw Dr. Gargollo, I had the pleasure of taking the little monster to orthotics to be casted for a new brace for her left foot. The physical therapist and orthotist who saw her in clinic last week felt like some adjustments to her AFO might keep her from falling down so much. Maybe it will help her dance moves as well!
I was pleased that she didn't tell her orthotist that she didn't like him. She did, however, cry about how painful being casted was the entire time. "It hurts mommy; he's hurting me." She has been casted a bunch of times. Nothing about being casted is painful, at all! It wouldn't hurt even if she could feel her feet. She could have won an Oscar for the drama she displayed yesterday afternoon.
I have never been so glad to get out of Scottish Rite Hospital. I have to take her back on May 6th to get her new brace. Hopefully, she will have a better attitude by then.
Monday, April 25, 2011
It's just one more thing...
Peanut butter and jelly sandwiches are off the menu at the Kennedy house. You won't find any Reese's Peanut Butter Cups, Snickers or Peanut M&Ms either. Julia is officially, confirmed by skin and blood test, allergic to peanuts, as well as pecans and walnuts.
I suspected she might have a peanut allergy a year ago when she got a mild rash the first time she tried peanut butter. Since then I have avoided giving her anything that contained nuts. That was until recently when Wade decided to "challenge" her peanut allergy with a PB&J while I was away from the house. One bite into the sandwich her face broke out in hives, her lips swelled up and Wade finally believed me that "we don't give Julia peanut butter."
While Julia has only had swelling and hives with previous exposure, her allergy doctor made it clear that every reaction to exposure can be different. We have to keep an Epi-pen with her at all times and be prepared for an anaphylaxis emergency.
It was clear this past Easter weekend how difficult it will be to keep Julia safe when we are away from home. It seemed like every other Easter Egg she opened had peanut butter candy in it. What is yummy for most kids is poison for Julia. I had to snatch most of her Easter candy away from her as soon as she got an egg opened. Thank goodness she was a good sport about it. The scene could have gone so differently if she had been in a different mood.
Julia's nut allergy is just one more scary medical issue. One more potentially life-threatening, how am I ever going to keep her safe when she is out of my sight, medical issue. It's just one more thing.
I suspected she might have a peanut allergy a year ago when she got a mild rash the first time she tried peanut butter. Since then I have avoided giving her anything that contained nuts. That was until recently when Wade decided to "challenge" her peanut allergy with a PB&J while I was away from the house. One bite into the sandwich her face broke out in hives, her lips swelled up and Wade finally believed me that "we don't give Julia peanut butter."
While Julia has only had swelling and hives with previous exposure, her allergy doctor made it clear that every reaction to exposure can be different. We have to keep an Epi-pen with her at all times and be prepared for an anaphylaxis emergency.
It was clear this past Easter weekend how difficult it will be to keep Julia safe when we are away from home. It seemed like every other Easter Egg she opened had peanut butter candy in it. What is yummy for most kids is poison for Julia. I had to snatch most of her Easter candy away from her as soon as she got an egg opened. Thank goodness she was a good sport about it. The scene could have gone so differently if she had been in a different mood.
Julia's nut allergy is just one more scary medical issue. One more potentially life-threatening, how am I ever going to keep her safe when she is out of my sight, medical issue. It's just one more thing.
Friday, April 22, 2011
Thursday, April 14, 2011
Thursday, April 7, 2011
Courage
"That was fun, Mommy," Julia said as the technician un-swaddled her and I helped her down from the cold, hard MRI table.
I had been dreading this MRI for weeks, worried about how her shunt was functioning and about how she would react to the test.
Typically she is reluctant to lay down on the sterile metal table, but not this time. She was happy as a clam.
The MRI technician explained to Julia that she was going to wrap her up nice and tight so that she could not move and then take some pictures of her head. Julia happily nodded her head and giggled. Then, she put some headphones on Julia's ears to block the noise and foam padding around her head so that it was immobile. Still, Julia was smiling. I leaned over her and told her that I would be right beside her and she tried to shake her head, but she couldn't move.
Then, they slid her into the MRI tunnel and the banging and clanking noises proceeded. I was still anxiously awaiting the silent tears and quivering lips that have accompanied every other CT or MRI, but they never materialized.
I am relieved that Julia is no longer scared to have an MRI or CT. They are part of life for her. I am sad that she has had so many in her three short years that they are common place, fun...
Hospitals and medical procedures and tests are not supposed to be fun. They have been so much a part of Julia's life that they are her normal. She asks routinely "Am I going to the doctor today?" and she says it with such enthusiasm!
I am grateful to the doctors, nurses and staff who have cared for Julia at Children's Medical Center and Scottish Rite Hospital. The gifts, lollipops, stickers and attention that they lavish upon her have made trips to the doctor not so scary. In fact, check-ups are down right fun. Her favorite part is when she gets to have a sparkly band-aide to wear home and show off to her sisters.
I will always be nervous about the outcome of Julia's medical tests and procedures. At least now I don't have to worry about her fear and anxiety, because she is so very brave.
I had been dreading this MRI for weeks, worried about how her shunt was functioning and about how she would react to the test.
Typically she is reluctant to lay down on the sterile metal table, but not this time. She was happy as a clam.
The MRI technician explained to Julia that she was going to wrap her up nice and tight so that she could not move and then take some pictures of her head. Julia happily nodded her head and giggled. Then, she put some headphones on Julia's ears to block the noise and foam padding around her head so that it was immobile. Still, Julia was smiling. I leaned over her and told her that I would be right beside her and she tried to shake her head, but she couldn't move.
Then, they slid her into the MRI tunnel and the banging and clanking noises proceeded. I was still anxiously awaiting the silent tears and quivering lips that have accompanied every other CT or MRI, but they never materialized.
I am relieved that Julia is no longer scared to have an MRI or CT. They are part of life for her. I am sad that she has had so many in her three short years that they are common place, fun...
Hospitals and medical procedures and tests are not supposed to be fun. They have been so much a part of Julia's life that they are her normal. She asks routinely "Am I going to the doctor today?" and she says it with such enthusiasm!
I am grateful to the doctors, nurses and staff who have cared for Julia at Children's Medical Center and Scottish Rite Hospital. The gifts, lollipops, stickers and attention that they lavish upon her have made trips to the doctor not so scary. In fact, check-ups are down right fun. Her favorite part is when she gets to have a sparkly band-aide to wear home and show off to her sisters.
I will always be nervous about the outcome of Julia's medical tests and procedures. At least now I don't have to worry about her fear and anxiety, because she is so very brave.
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