This Momma is truly terrified now. The concern has risen to a whole new level. Alert: this is not going to be a positive, feel-good post. Feel free to stop reading immediately if you need to.
Last night, Angie fell asleep on my lap while we were watching a movie. This was unusual as we have a structured bedtime routine and rarely deviate from it. She rarely sits long enough to snuggle with us. Since she hasn't been sleeping well, she must have been truly exhausted. As she was falling asleep, her left hand, arm, and leg began to jerk and twitch periodically. Occasionally, her head would jerk slightly also. I think I stopped breathing. I was frozen. Has this been happening every night when she is tucked snugly into her bed? I have no idea. Now what?
The movements continued after she was asleep for another 45 minutes or longer. Eventually I laid her next to me because I could not take the feeling of the jerks and twitches any longer. It is impossible to describe how it feels to hold a child during seizures and beg God to stop them-NOW PLEASE!
Today, I have played it over and over in my head. Yes, my first impression was correct. Okay. I have emailed her doctors and I am confident that they will respond quickly as they always do. I am thankful for my faith today and I know that God is not surprised or upset by this new development. He is in complete control of our lives, as much today as He was yesterday. He has heard my prayers and He is faithful.
Sunday, January 26, 2014
Friday, January 24, 2014
Labels
I have been thinking about labels. Labels tell us what is inside of a container, like chicken noodle soup or canned spinach. The label describes the contents. We would be pretty disappointed if we thought we were opening a can of chicken noodle soup for lunch and we got spinach instead. We need a label. My kids put labels on their belongings so they are not lost at school. The label indicates ownership- and yet my kids still lose their backpacks and hats. Labels are used to identify status or position, such as Team Captain or District Manager. The label describes the individual's role or duties. Labels are given to children's disorders and challenges to tell parents and professionals what to expect from that child and how the child might be affected in the future. But these labels can be deceiving and their purpose is not as clear as the others.
I hate these labels. While I understand the necessity of identifying medical disorders so treatment can occur, I resist the idea that a child's skills and potential can be captured in a label. Cancer-yes. Cerebral Palsy-yes. Autism-yes. By all means, give parents these terms for their child's condition so they can help their child get the best treatment possible. What about Angie's recently applied label, Intellectual Disability? In 2010, President Obama signed "Rosa's Law" which forbid the term Mental Retardation in federal statutes and replaced it with the term Intellectual Disability. So, know you know. Angie has deficits in her ability to learn and in her self-help skills. Yep, she is functioning with half of the brain matter that the rest of us have so she would definitely been impaired in these areas. But do we need the label? What is the benefit? She has more than one diagnosis already so one more is not going to provide access to additional services for her.
Recently I read of a child who was denied occupational therapy services by her insurance company and the justification given was "no observable potential". What? Whoever wrote that should be ashamed of themselves. The plasticity of the brain is amazing and I believe that a child's potential is unlimited, regardless of their circumstances. We simply do not know what he, or she can achieve. I am not in denial. I see Angie's challenges and I am realistic about her limits. I also see her drive to keep up with her peers and to engage with them in a meaningful way. I see her often stoic approach to the ongoing medical interventions she endures. I see her find ways to participate in activities that the require two hands using only one. I see her unbelievingly caring heart and her empathy, asking me several times each day, "Mom, are you okay?". I see her and I know her strength and potential. It is unlimited.
I believe that labels invite generalization and stereotypes. I urge you to see beyond the labels and see the person. See their potential and their spirit. Encourage them to reach for the stars and applaud them when they succeed. Anything is possible.
I hate these labels. While I understand the necessity of identifying medical disorders so treatment can occur, I resist the idea that a child's skills and potential can be captured in a label. Cancer-yes. Cerebral Palsy-yes. Autism-yes. By all means, give parents these terms for their child's condition so they can help their child get the best treatment possible. What about Angie's recently applied label, Intellectual Disability? In 2010, President Obama signed "Rosa's Law" which forbid the term Mental Retardation in federal statutes and replaced it with the term Intellectual Disability. So, know you know. Angie has deficits in her ability to learn and in her self-help skills. Yep, she is functioning with half of the brain matter that the rest of us have so she would definitely been impaired in these areas. But do we need the label? What is the benefit? She has more than one diagnosis already so one more is not going to provide access to additional services for her.
Recently I read of a child who was denied occupational therapy services by her insurance company and the justification given was "no observable potential". What? Whoever wrote that should be ashamed of themselves. The plasticity of the brain is amazing and I believe that a child's potential is unlimited, regardless of their circumstances. We simply do not know what he, or she can achieve. I am not in denial. I see Angie's challenges and I am realistic about her limits. I also see her drive to keep up with her peers and to engage with them in a meaningful way. I see her often stoic approach to the ongoing medical interventions she endures. I see her find ways to participate in activities that the require two hands using only one. I see her unbelievingly caring heart and her empathy, asking me several times each day, "Mom, are you okay?". I see her and I know her strength and potential. It is unlimited.
I believe that labels invite generalization and stereotypes. I urge you to see beyond the labels and see the person. See their potential and their spirit. Encourage them to reach for the stars and applaud them when they succeed. Anything is possible.
Monday, January 20, 2014
Has it really only been a week?
I can't believe it has only been a week since last Sunday. The day we had to take another look at our reality and readjust our perspective about Angie's disease. To remember the insidious nature of Sturge-Weber Syndrome and its ability to steal what is most precious. To resume our watch over our girl with new intensity.
But life continues on. This week, we attended basketball games (8 of them!), kept our regular work schedules, took Angie for testing, scheduled more appointments, administered medication, battled the Oregon Health Plan, and attended service-planning meetings for two children which spanned over 4 hours. We facilitated homework and room-cleaning, made meals, and washed the laundry.
But life continues on. This week, we attended basketball games (8 of them!), kept our regular work schedules, took Angie for testing, scheduled more appointments, administered medication, battled the Oregon Health Plan, and attended service-planning meetings for two children which spanned over 4 hours. We facilitated homework and room-cleaning, made meals, and washed the laundry.
Tuesday, January 14, 2014
The return of the evil monster
The evil monster has invaded our home. Silly me, I thought he was gone for good. But isn't that how the monsters in scary movies always operate? They wait for their victim to relax and/or have their back turned, and then they strike. The monsters name? Seizures. Yes, he thought he would take us for another round in the ring but he is not going to win this battle, not on my watch.
We have been attempting to taper Angie down from her last seizure medication. On Sunday, she was 12 days from what would be the last dose (I hoped) she would ever take. She was doing well, with no noticeable changes. Until the monster struck on Sunday afternoon. And again on Monday. I mentally locked the door to keep him out, but he persevered. And everything changed.
Now, we will increase the dosage again and pray that we have seen the last of the monster. Our reality is that he could be lurking around any corner. Waiting for us to let our guard down again, or turn our backs. He has invaded our sense of security and has brought back old fears that we thought we put away for good. Now, I will be up at night checking on my girl to make sure she is sleeping peacefully. I will hesitate before I go into her room each morning, afraid to find that the worst has occurred overnight, as it has to many, many children with Sturge-Weber. I will leave the rescue medication within reach at all times, and I will evaluate Angie's movements like never before. I will play out the scenario in my head in which I need to call the ambulance and be ready to go to the hospital for an undetermined amount of time. This monster plays dirty and despite my vigilance, I am scared that he will win. Really, really scared. And I am mad. The seizure monster that haunts children with Sturge-Weber is like none other. He is ruthless and the havoc he brings is terribly unresponsive to medication.
On Sunday, the day the monster returned, I learned that he had taken the life of another precious child with Sturge-Weber Syndrome. Jacob was 6 years old and his parents and I belong to the same online support group for parents of children with Sturge-Weber. The news of his loss, understandably, causes near-panic in the hearts of the other parents as we imagine it happening to us. Please, evil monster, go away and leave my family alone. You are not wanted here.
We have been attempting to taper Angie down from her last seizure medication. On Sunday, she was 12 days from what would be the last dose (I hoped) she would ever take. She was doing well, with no noticeable changes. Until the monster struck on Sunday afternoon. And again on Monday. I mentally locked the door to keep him out, but he persevered. And everything changed.
Now, we will increase the dosage again and pray that we have seen the last of the monster. Our reality is that he could be lurking around any corner. Waiting for us to let our guard down again, or turn our backs. He has invaded our sense of security and has brought back old fears that we thought we put away for good. Now, I will be up at night checking on my girl to make sure she is sleeping peacefully. I will hesitate before I go into her room each morning, afraid to find that the worst has occurred overnight, as it has to many, many children with Sturge-Weber. I will leave the rescue medication within reach at all times, and I will evaluate Angie's movements like never before. I will play out the scenario in my head in which I need to call the ambulance and be ready to go to the hospital for an undetermined amount of time. This monster plays dirty and despite my vigilance, I am scared that he will win. Really, really scared. And I am mad. The seizure monster that haunts children with Sturge-Weber is like none other. He is ruthless and the havoc he brings is terribly unresponsive to medication.
On Sunday, the day the monster returned, I learned that he had taken the life of another precious child with Sturge-Weber Syndrome. Jacob was 6 years old and his parents and I belong to the same online support group for parents of children with Sturge-Weber. The news of his loss, understandably, causes near-panic in the hearts of the other parents as we imagine it happening to us. Please, evil monster, go away and leave my family alone. You are not wanted here.
Friday, January 10, 2014
Angie through her siblings eyes
I am often asked questions about our other children's feelings about Angie. It will go something like this, "So, how do the other kids feel about Angie?", or "Do the other kids resent the time you spend with Angie?". Questions that come from curiosity, I think, and not from judgment. Unless you are one of those that has actually told us that we were being selfish or negligent by allowing Angie to take from the other kids' allotment of time and attention. That's different.
When Angie came into our home as a newborn, it was to be a 2-3 day placement. Months and then years passed by and eventually we were asked to consider a permanent foster placement, much like an adoption but without the legal formality, By this time, we had endured multiple hospitalizations, heartaches, victories, tears, and joy in her presence, and she had taken up residence in our hearts. Before deciding, though, we asked our children for input. They acted surprised that we would even question them and their reply to whether we should make the commitment permanent was a resounding "YES!".
Since Angie came into our home, Toby and I have spent days at a time at the hospital with her while family and friends took over for us at home. Most often, Toby and I took turns staying over at the hospital while the other stayed at home. These were difficult times for our family and they lasted for over a month on more than one occasion. The kids missed us and we missed them. Mostly, though, we all worried for our girl and wanted to be back home together. Did our kids have to give up some time and attention? Of course. Would they prefer to have everyone at home together? Of course. Joshua celebrated his 9th birthday in the commons at Emanuel Children's Hospital during an especially difficult hospital stay. Many days, the kids would wake up to learn that Angie and I had taken up residence at the hospital in the middle of the night. What did they do, you ask?
They called me on the phone to ask how Angie was doing many times a day. They climbed into her hospital bed to calm her, whisper in her ear, and just to be close. They put on masks so they could visit during the 2009 H1N1 outbreak. They brought me food and clothes and asked how I slept in my narrow bench in the corner of the room. They asked their Sunday School classes to pray for Angie, made her cards, told their friends at school about her , and asked if they could stay home from school when she was discharged so they could welcome her home. When she came home, they made her cozy beds on the sofa, brought her drinks, and made her laugh.
We regret that Angie's medical needs have taken us from our other children at times. We know that the other kids have missed us and have sometimes needed us during the days and nights that we have been away. Toby and I believe, however, that the positive impact of our journey far outweighs the negative consequences. Our children have a unique empathy and compassion towards others. If you know them, you know this is true. They are the first in a room to give up their seat to an adult or to offer help to a young person in need. Our children have learned to live in the moment and to be grateful for small pleasures. They understand, at their own level, that family is most important and that others matter. They understand that life is fragile and they realize that they have a huge network of people who love them and are there to help in times of need.
All families have times of jealousy and resentment. We would not be human if we didn't. But in our family, Angie is not the cause any more often than the others. Thanks for asking, though.
When Angie came into our home as a newborn, it was to be a 2-3 day placement. Months and then years passed by and eventually we were asked to consider a permanent foster placement, much like an adoption but without the legal formality, By this time, we had endured multiple hospitalizations, heartaches, victories, tears, and joy in her presence, and she had taken up residence in our hearts. Before deciding, though, we asked our children for input. They acted surprised that we would even question them and their reply to whether we should make the commitment permanent was a resounding "YES!".
Since Angie came into our home, Toby and I have spent days at a time at the hospital with her while family and friends took over for us at home. Most often, Toby and I took turns staying over at the hospital while the other stayed at home. These were difficult times for our family and they lasted for over a month on more than one occasion. The kids missed us and we missed them. Mostly, though, we all worried for our girl and wanted to be back home together. Did our kids have to give up some time and attention? Of course. Would they prefer to have everyone at home together? Of course. Joshua celebrated his 9th birthday in the commons at Emanuel Children's Hospital during an especially difficult hospital stay. Many days, the kids would wake up to learn that Angie and I had taken up residence at the hospital in the middle of the night. What did they do, you ask?
We regret that Angie's medical needs have taken us from our other children at times. We know that the other kids have missed us and have sometimes needed us during the days and nights that we have been away. Toby and I believe, however, that the positive impact of our journey far outweighs the negative consequences. Our children have a unique empathy and compassion towards others. If you know them, you know this is true. They are the first in a room to give up their seat to an adult or to offer help to a young person in need. Our children have learned to live in the moment and to be grateful for small pleasures. They understand, at their own level, that family is most important and that others matter. They understand that life is fragile and they realize that they have a huge network of people who love them and are there to help in times of need.
All families have times of jealousy and resentment. We would not be human if we didn't. But in our family, Angie is not the cause any more often than the others. Thanks for asking, though.
Friday, January 3, 2014
My heart
Yesterday was my first day back to work after a long, much appreciated break. This year, my break felt more "family" than ever before, and yet I also had many opportunities to be alone as others invited my children to spend time with them. It was perfect.
Today, we had scheduled three children to come in for testing. If you do not know what I do, I am the Program Director for a center that provides therapy services for infants and toddlers with special needs. Much of my time is spent performing screenings with parents and determining if children need further testing. And I manage people and programs. I LOVE MY JOB!! One family particularly touched me today due to their child's significant needs and the similarities the situation bore to my own.
The families that I encounter in my work take up residence in my heart and they stay there for weeks, months, even years. The families that I see on testing days are especially dear to me. I know firsthand how hard the testing days are with the difficult information and scores that describe your child's abilities, but will never define who they are or can become. I want to scoop those parents up and hug them tight. I want to tell them that special children know no limits and their lives will be blessed beyond their imaginations as they parent them. I would tell them that their child's physical care may continue to be exhausting, but their lives will be changed by first smiles, words, and steps in a way that parents of typically-developing children will never understand. God has chosen them to care for these wonderful, fragile children and that is an amazing honor.
I would tell them that the long nights in hospital rooms, visits to specialists, and embarrassing moments in grocery stores and malls will be worth every moment. That it is okay to feel exhausted and overwhelmed and to ask for help. It is ok to feel like you do not want to continue this crazy existence for one more day. I UNDERSTAND.
Instead, I welcome them and praise their beautiful children. I smile and try to convey that they are in a place where they will be understood and will find information, support, and people who love to care for their children. The rest can wait and they will realize most of it on their own as they continue on their own personal journey.
Thank you for continuing with me and my family on our journey to raise our special children. We do not forget for a moment that we are surrounded by a community that cares for us and our children and we are grateful. So grateful.
Today, we had scheduled three children to come in for testing. If you do not know what I do, I am the Program Director for a center that provides therapy services for infants and toddlers with special needs. Much of my time is spent performing screenings with parents and determining if children need further testing. And I manage people and programs. I LOVE MY JOB!! One family particularly touched me today due to their child's significant needs and the similarities the situation bore to my own.
The families that I encounter in my work take up residence in my heart and they stay there for weeks, months, even years. The families that I see on testing days are especially dear to me. I know firsthand how hard the testing days are with the difficult information and scores that describe your child's abilities, but will never define who they are or can become. I want to scoop those parents up and hug them tight. I want to tell them that special children know no limits and their lives will be blessed beyond their imaginations as they parent them. I would tell them that their child's physical care may continue to be exhausting, but their lives will be changed by first smiles, words, and steps in a way that parents of typically-developing children will never understand. God has chosen them to care for these wonderful, fragile children and that is an amazing honor.
I would tell them that the long nights in hospital rooms, visits to specialists, and embarrassing moments in grocery stores and malls will be worth every moment. That it is okay to feel exhausted and overwhelmed and to ask for help. It is ok to feel like you do not want to continue this crazy existence for one more day. I UNDERSTAND.
Instead, I welcome them and praise their beautiful children. I smile and try to convey that they are in a place where they will be understood and will find information, support, and people who love to care for their children. The rest can wait and they will realize most of it on their own as they continue on their own personal journey.
Thank you for continuing with me and my family on our journey to raise our special children. We do not forget for a moment that we are surrounded by a community that cares for us and our children and we are grateful. So grateful.
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